How "they" view "us"

Those of us who dedicate considerable time and effort to combatting quackery generally do it because we think we're doing good. Certainly, I wouldn't spend so much time nearly every evening blogging the way I do if I didn't think so. It's true that I also enjoy it, but if I were doing this just for enjoyment I'm sure I could manage to find other topics that I could write about. In actuality, way back in deepest darkest beginnings of this blog, I did write about a lot of other things. My skeptical topics were more general in nature, encompassing not just medicine but evolution versus "intelligent design" creationism, religion, Holocaust denial, history, and even the occasional foray into politics. Over time such diversions became rarer, to the point where I hardly ever write about topics other than medicine anymore. I think that the reason for that is simple: It's what I'm most passionate about, and I think it's where I can do the most good. Like most bloggers supporting skepticism and, in particular, science-based medicine, I think of myself as doing my part to educate, hopefully in an entertaining fashion, and I've been rewarded with one of the more popular medical blogs out there and a small degree of notoriety. Indeed, I sometimes think of myself as a microcelebrity, because I have a little bit of fame, but it doesn't really extend outside of the blogosphere. That's fine with me.

It's often instructive, however, lest I become too smug or comfortable, to take note of how the "other side" thinks of those of us who try to promote SBM and, in doing so, educate the world about quackery. The way we think of ourselves does not resemble in any way what the quacks and antivaccinationists think of us. At some level this is not surprising. After all, any of us who've been at this for a while and managed to accumulate enough of an audience to be noticed by the "other side" will be subject to charges that we are "pharma shills," hopelessly in the pay of big pharma. To the "other side," obviously that must be why we do what we do, because we can't possibly be doing this because we're passionate about our beliefs. It's such a common (and specious) attack that more than seven years ago I coined a term for it (at least I think I coined the term—I can't find its use before my first post on it), the "pharma shill gambit."

However, how we are seen by our opponents goes is much worse than mere allegations of undisclosed conflicts of interest, in which (apparently) nefarious drug companies are paying us to sit at our computers in our underwear turning out attack after attack on antivaccinationists and practitioners of "natural healing." I was reminded of this recently. Let's revisit briefly a post I did about Stanislaw Burzynski last week. As you recall, I've been very critical of Burzynski on a number of occasions for his peddling of ineffective "antineoplastons," his promotion of what I have referred to as "personalized gene-targeted cancer therapy for dummies," his playing fast and loose with human subjects protections in the numerous clinical trials he runs, and his arrogance of ignorance. Basically, I view Burzynski as someone who is incompetent as an oncologist and highly unethical as a researcher charging patients huge sums of money to be in his clinical trials that never seem to end up being published.

So last week I noted that word had appeared around some skeptical blogs that a patient's family that reported that apparently the FDA is in the process of auditing the Burzynski Clinic, that Burzynski hasn't been able to use antineoplastons in children for a few months now, and that apparently he's also been banned from administering antineoplastons to adults as well. I kept the identity of the patient confidential, as did other bloggers writing about the family's post. However, today I learned that the family has learned about how their post has leaked out. More importantly, I learned how they view those of us trying to report on Burzynski's activities:

It has come to my attention that there are some uninvited guests following our posts about Alynn. Even with all our progress and good news, anti-Burzynski weirdos find ways to take information I privately post and exploit it as negative criticism. I will be upping the security on our site and removing certain users from allowing access to our account. If I block you by mistake, please take a moment and send me a message. Friends, family, friends of friends.. you should know how to contact me. I will gladly add you back. If I have never met you, and you have good reason to follow our page, even if you are just curious about Burzynski and have come across our story, I will add you back if I can verify your intent is not malicious.

Yes, there are anti-Burzynski groups. Makes no sense to me why these people waste time and want to take away our freedoms. Fortunately, they only have each other and no one really cares about all the effort they put into creating articles and web pages and blabber. I never even heard of such people! I wonder if these cavemen even have iphones yet, I'm surprised they can work the computer. I debated making Alynn's page public, but I am not into exploiting my child, as these groups are into exploiting children and adults, mainly those who are no longer with us who happen to be patients of the clinic. What I have found in following some facebook pages of kids with terminal illnesses, it seems there are always those people that think they know everything and post really evil, heartless comments. Apparently, I'm not immune to this.

Please do not waste a second of your time trying to avenge are little hero and Dr. Burzynski. It really would do them great satisfaction to know that they rubbed someone the wrong way. Evil people feed off of aggravating others. Bad people have no place in our healing journey.

Yes, that's right, and it might be jarring to some skeptics. In marked contrast to how I view most believers in pseudoscience such as antivaccinationism or patients pursuing dubious cancer therapies, which is that they are wrong, that they've made a horrible mistake, but that I can to some extent understand it on the basis of human nature, believers such as Burzynski patients and their families view us skeptics as downright evil. To some extent, one can understand this. These parents believe that Burzynski is the only hope for their terminally ill relatives to survive. They know they've made a decision that their doctors almost certainly tried to talk them out of. Rather than let in a modicum of doubt about that decision, it is easier to view those of us who are trying to combat the misinformation that is used to support his clinic and activities as heartless monsters, as enemies who are actively trying to prevent their children from being cured of cancer. And, yes, that is really, really how they view us.

Don't believe me? Take a look at what Stanislaw Burzynski's propagandist Eric Merola is now saying on his website about the "anti-Burzynski" bloggers:

Overall, you need to be able to think for yourself. Question everything, including me and this film. Feel free to verify all sources used for this film for yourself via the Sourced Transcript [link]. You will notice the "anti-Burzynski bloggers" refuse to do that or adhere to reputable sources. You might say, "they are preying on desperate cancer patients and families of cancer patients" by carelessly misleading their readers about Burzynski and his invention. This is a natural course of history when scientific innovation like this occurs, and is something that is to be expected. Never underestimate the irrationality of the human brain when it is confronted with something it doesn't understand. These bloggers have an agenda, and are not open to rational discourse.

Our society is built on propaganda wars, and wars of information and disinformation. The fact that most people will basically believe anything they are told without bothering to find out if what they are told is true or not—makes them for easy prey, especially when they are dying of cancer. The writers of the "anti-Burzynski" bloggers know this—and take full advantage of this.

Of course, I did just that, going over Merola's "sourced transcript" over a year ago in my original review of his movie. Be that as it may, notice the message being promoted. "Anti-Burzynski bloggers" are out there to keep you from being cured of cancer! They're "preying on desperate cancer patients and families of cancer patients"! Why? Who knows? The best Merola can come up with is a variant of the Galileo Gambit, in which we skeptics apparently reflexively resist anything that's different. In reality, if Burzynski had the goods, he could persuade us, which is why seeing Merola accuse us of "not being open to rational discourse" fried another one of my irony meters.

It's not just Burzynski fans, either. Antivaccine activists also believe that skeptics and supporters of SBM are out to get them. For instance, last week I also took note of an internecine conflict developing among the crew at the antivaccine crank blog Age of Autism. What interests me now is not so much the conflict itself, given that there haven't been any new developments of which I'm aware, but some of the comments after one of the posts that brought it all to a boil, which are perhaps epitomized by this one about "ScienceBloggers":

They really go so out of their way (mounting hate campaigns like "ditchJenny" etc. etc. and this is why I honestly doubt their "Oh we're not paid shills," claims. Real, open minded science people wouldn't be so militant and many scientists/doctors actually disagree with them anyways! Someone mentioned that most of them are either young, impressionable types or older has-beens who get off on bashing others with social media. The more that I think about it, they're above all, bullies, not pro-science people. I have several friends with MS and it makes me sick as to how they malign anything to do with CCSVI (when MS drugs have killed SOOO many more people than angioplasty ever will) - I believe 3 people have died due to angioplasty- mostly due to having been given stents which they don't even put in veins anymore. There's a jerky journalist in our town who actually uses "Science"blogs as his source of information to write on health topics which is really scary (and lazy). It is beyond pathetic that grown up people waste time trying to prop up the status quo in healthcare when it is so obvious that there are serious questions that need to be asked and answered to do with vaccines and questions also to issues of MS cause and treatment.

Yes, as I said before, they really, really hate us. They view us as the enemy, evil people who are actively trying to keep them from healing their children of autism, every bit as much as the parents of Burzynski patients view us as wanting to kill their children by preventing them from being treated by the Savior Burzynski. It is an attitude and view that is actively promoted by Wakefield and his ilk, as well as their supporters, the way Eric Merola tries to whip up paranoia about what he calls "anti-Burzynski bloggers," and, I suspect, the way that the man who is being reported by commenters to have recently been hired as Burzynski's new PR man, Wayne Dolcefino, will try to demonize and dismiss Burzynski's critics. (I don't have full confirmation yet, but, if it is true and Dolcefino is indeed Burzynski's new PR flack, one wonders if Burzynski chose him because of his investigative journalism skills, which could facilitate digging dirt on Burzynski's critics.) To them, we are not just wrong, but we are vile, contemptible, less than human pharma shills. That's also why, like Burzynski patients, they go into full attack mode whenever there is criticism of their heroes, in particular Andrew Wakefield. These practitioners represent hope, and to attack them is to attack hope. We have to remember that criticism of people like Wakefield or Burzynski only serves drive their worshipers closer.

Now of this, however, is to say that we shouldn't criticize them. Andrew Wakefield has done great harm, and as a cancer doctor and researcher I simply can't abide Burzynski's activities—and rightly so, in my opinion. Certainly, I've never pulled any punches. On the other hand, we do have to remember who are targets are and what our goals are. I have no expectation that I will ever be able to convince someone like the parents whom I quoted above. Occasionally, I actually do get through to such people, but it's so infrequent that I can't count on it. My goal is instead to put science-based information out there, so that the fence sitters and undecided can encounter it. If the occasional true believer listens, then I've done far better than I would ever expect.

In the meantime, I don't make the mistake of thinking that in return for my efforts I will ever receive anything but hatred and contempt from the "other" side.

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Time and time again, following accusations of fabrication by skeptics, I've asked Burzynski fans to specify any instance where I or any other Burzynski blogger linked on my blog has fabricated anything. Such requests have always gone unanswered.

Whereas I believe Burzynski critics take great care to be accurate and not to mislead, it seems Burzynski supporters are quite happy to sling mud, making broad, unfounded accusations, for which the only purpose can be to mislead.

By Josephine Jones (not verified) on 11 Feb 2013 #permalink

The more successful you are, the more they will hate you.

By Kathy Immelman (not verified) on 11 Feb 2013 #permalink

And while the Science bloggers allow people like Didimus Judge Thomas and other Burzynski fans, to post on their blogs, the Burzynski fans and fans of other quacks and anti-vacs, are blocking all critical voices.

It strikes me that many Burzynski "fans" are not so much fans of doctor but of the narrative - the brave doctor with his alt med treatment fighting alone against the FDA and big pharma.

At no point does it appear to occur to them that if his treatment worked then he should have no trouble providing clinical evidence, no trouble sailing through his clinical trials, no trouble convincing anybody in the medical establishment to adopt his treatment. He'd be a billionaire from the success of his treatments and he'd have to build a wing on his house just to house all the trophies, awards and gifts that a grateful world would shower upon him.

He's had 30 years to prove his treatment and he can't even do that.

Sadly, Alynn will likely die of her cancer, Dr. B will have made a few more dollars and the parents will almost certainly continue to defend his sorry ass.

Burzynski will continue to lie and dance to keep making more money off of desperate, scientifically dim folks and get them to cheer him on in the face of no evidence.

It makes me sick how quackery supporters try to twist things. For example, when I debate antivaxxers from my country on the interent, they try to slip the notion that "people vaccinate because of big pharma propaganda that has programmed them to fear those "terrible" childhood diseases." But no one has ever advertised or used the media to advocate the MMR, DPT, etc. vaccines. There are adverisments only for the HPV and flu jabs, but the companies have the full right to advertise them. Instead we are being flooded from literally everywhere by pseudoscience (homeopathy, structured water etc) which appears on every TV programme sooner or later. We lack skeptical bloggers but are full of forums and sites that promote conspiracies and alternative medicine. Doctors fail to defend vaccines on TV because they know absolutely nothing about the bad science and cherry picked data the quacks cite, so the only thing they can say is "This is not true" which of course makes them look pathetic. So it's the other way around. What people really fear is vaccines, that's why they don't vaccinate and there are outbreaks.

The other pathetic attempt at twisting things is the accusation of us being closed minded and sheeple. Again, no. They don't see (or maybe they do to some extent) that they have simply memorized a couple of lines which they repeat over and over again, never address the counter arguments and when they run out of lines, they start from the beginning all over again, like ****ing robots. For one has irreversibly become a sheeple, if they falsley think they are enlightened.

I've never understood how Big Pharma is supposed to profit from letting people die... Surely live patients are more profitable than dead ones? It's an "Underpants Gnomes" strategy: suppress cancer cure > ???? > profit!

MikeMa- it's statements like that which turn patients' families against us. Speculating on the patient's chances, calling them dim, these do no favours to people who are trying their best to do whatever it takes for their loved one.

These people invest a lot of time in research and try to come into these situations as well-informed as possible. They're not stupid or scientifically dim. There is a lot of credible-sounding misinformation out there. But seeing things like this automatically turns them off, and they get turned off from any message that's being delivered by people they see as "skeptics".

@ Dunc, yeah, well that's because all those cheap and natural cancer cures will make profits from the "very expensive posion" cease. Same with the other medicines. They don't want to cure your high blood pressure so you can take beta-blockers for life and then there are the side effects which for which you have to take other pills and so on. A very well thought out profit chain, you know. They only acknowledge emergency aid and surgery. It's been deliberately advanced to the current level so 'no customers are lost", because they will have to take them pills afterwards.

Reading patients/parents lash out at anyone who disagrees with their chosen source of hope and their determination to think positive is actually heartbreaking. Hope can be cruel sometimes. And my best friend is still dealing with the aftermath of a guy who was so convinced that he would recover from his metastatic cancer that, although urged, he didn't make a will or do anything whatsoever about putting his affairs in order, leaving his family in a horrible mess when he died.

Dunc, I am trying to figure out what an 'underpants gnomes' strategy is.

I think a decent 'what's the harm' study would be helpful. I think we all know people who have died because they chose alternative treatment over conventional, but do we have any idea what the scale of that might be? At the cancer agency I work for, up to 80% of patients use some kind of CAM, but how often that is in lieu of actual treatment is entirely unclear. Without knowing really how common it is, I have ended up arguing that I knew a woman who tried to cure her breast cancer with reiki (unsuccessfully, as you might image), which is just an anecdote like any other. Mind you, when the reiki master spoke at my friend's open-coffin funeral, it was a bit much to take.

FionaG - look up "Gnomes (South Park)" in Wikipedia and read about their business plan.

By Mephistopheles… (not verified) on 12 Feb 2013 #permalink

Wow-O, that was kind of self righteous and self pitying. I worry about this "enemies" and backlash approach. Again, I am not a B camp follower, and I'm kind of annoyed about the P2 publishing record.

...coined a term...the “pharma shill gambit.”
As to people "on the other side," I suspect some will see varied levels of involvement, with many "pharma shills" (and "CAM victims") being what others have classed as "cannon fodder" or "useful idiots".

One of the problems I've encountered here at R Insolence is the instant dismissal by some. With so many epithets and (ill founded)objections, these seem think that all CAM is bs. If two myths or wrong statements don't make an guffaw correct, three or four apparently "prove" it. However, point blank, "skeptics" here frequently believe in urban legends where they have failed to do enough homework.

I also have encountered some skeptics trying to be consistently fair minded while properly skeptical, dealing with new views and information that contradict their previous perceptions and those common assertions. Praise to them. Mostly one is just skating on thin ice.

As for desparate patients and parents, the underlying problem is mainstream medicine's failure to deliver timely, better solutions for many medical circumstances. Sometimes patients find good alternative biological resolutions, and sometimes they arrive at disaster. The average patient needs better tools and support to independently choose treatments, to bridge many serious gaps that exist in orthodox medicine.

There is a lot of credible-sounding misinformation out there.

QFT. There are some alt-med modalities that an educated layman should be able to figure out are bogus, such as homeopathy (anybody who has taken high school chemistry should be aware of Avogadro's number) or touch therapy (then fourth grader Emily Rosa debunked this for a science fair project). But there are many others which are harder to spot. Burzynski's antineoplastons are in this category. My background is physics, not biology, so I can't explain the science of why this treatment is bogus as well as an expert like Orac can. And I can see how somebody who's desperate to save a loved one would ignore the alarm bells that should be going off when a Burzynski tells them he can do it for a substantial price. Then the people who patronize Burzynski's clinic double down when Orac et al. try to tell them antineoplastons are bogus--they want to believe that they are not victims of a con.

By Eric Lund (not verified) on 12 Feb 2013 #permalink

MedTek- It's comments like yours that do our cause no justice. I'm sick and tired of all this politically correct nonsense. Since when were we suppose to be a bunch of PR puppets. Let's face the reality of it. MikeMa is right. Alynn will die a painful death like others have. Sorry, but she will. Burzynski's crap is just that. Crap. And we shouldn't have to say it's crap on one end and then sugarcoat it to death on the other so as to not offend "the public". We're saving the public by being real not fake.

I for one am sick and tired of it. If patients want to keep going to a quack then I for one will tell them they're going to die and further that they're idiots for continuing to seek a fraud given all this evidence. It's not like they don't have resources anymore. Get real. They have no pity from me at this point. It's harsh, some might not like it, but I'm definitely not the only skeptic thinking this. That's a fact.

Enough is enough and its time we called out everyone who's funding this butcher burzynski, which includes his patients. If they would use half their brains for a second, burzynski would be done for. Simple as that.

Same old complaint prn? Now, what have you learned while you hang out here about CAM treatments? If a treatment has been proven to work after trials...then it becomes a standard of treatment.

Why hasn't Burzynski enlisted any patients into his sole Stage III trial, prn?

The donor site for St. Jude Children's Hospital is still open. Why not put your money where your mouth is, and make a small donation? Alternatively, you might make a small donation to any other cancer treatment center.

http://thehoustoncancerquack.com/

It's all in how deep their ideas go, really. I've seen plenty of people who have an idea planted deep into their minds, and they cannot let it go no matter what. Someone who is losing a battle with cancer may very well be inclined to hope, and then someone else comes along and implants the idea that the cure for cancer is out there but the government is keeping it from them. The idea is seeded and grabs on because of that hoping for a miracle.

You can reason with folks like that. You can show them all the evidence in the world. But their mind is made up, and all we can do is carry on.

So, prn, you think the problem is that science is not working fast enough for some people? If that is the problem, how would you suggest that be resolved?

By Sullivanthepoop (not verified) on 12 Feb 2013 #permalink

ABC: If you have a cure for high blood pressure go win yourself a Nobel prize. Beta blockers are the best we have had since the 1930s. They are used because they work, but unfortunately they work on many systems, not just blood pressure. Also, doctors try many things first before giving a patient beta blockers. They try to have the patient drink more water, quit smoking, get more exercise, lose weight, cut excess salt out of their diet. See, they are trying to cure it before giving medicine, the only way anyone knows how.
See, I have high blood pressure and no one ever tried to give me beta blockers so that they could give me more medicine. I actually have to take a biologic for it because it is immune system related.

By Sullivanthepoop (not verified) on 12 Feb 2013 #permalink

"As for desparate patients and parents, the underlying problem is mainstream medicine’s failure to deliver timely, better solutions for many medical circumstances."

In other words, science can't make sh*t up as fast as CAM purveyers do.

Eric- well put, thanks.

I've yet to see nasty comments left on patient blogs or pages from skeptics. However, I've no doubt based on the behaviour of Burzynski fans on Twitter that they would have any problem at all posing as skeptics and doing such things. I also can envision "helpful" skeptics leaving anti-Burzynski comments in these places.

I'm certain however that patients are *told* this is going on regularly, whether or not it actually occurs. Certainly most of the people I know would never do such a thing. It's all part of the campaign to paint the people shining the light on Burzynski as evil and anti-patient.

How do hey view us?
Today Alison MacNeil responds with a post @ TMR entitled:
"Dirty. Rotten. Scoundrels."
Of course, she's talking about how anti-vaxxers view those who support SBM, which echoes the sentiments currently a-buzz @ AoA.

"Mama Mac" creates a most wanted list of perpetrators of vaccine lies, i.e. SBM about vaccines. Oddly, our esteemed and gracious host doesn' make the list, although a visitor to RI does. Ms MacNeil invents a new term, " vaccine epidemic denier" which is applied to Roy Grinker, of GWU.. isn't that where Jake Crosby is?

By Denice Walter (not verified) on 12 Feb 2013 #permalink

LL@15 Not really interested in B.
...treatment has been proven to work after trials…then it becomes a standard of treatment.
Many patients don't want that degree of restrictions or expense, and want a different set of options. The current "standard" approvals and insurance system embraces a glacially slow system that often uses outdated techniques, sends patients home empty handed despite often cheap options, or forces them into being lab rats with little or less likelihood of personal success.

Also p=0.05 as "proven" is a self serving corruption of science and language, "officially approved" would be more correct.

@17: I don't think medicine makes thorough use of the science and technology that are available, especially in assembling individual treatment options. Also I think that there are SBM modes that allow better trial options for the individual with faster overall learning curves than current EBM.

So... we're trying to take away their freedom-- to get conned?

By Melissa G (not verified) on 12 Feb 2013 #permalink

@Will - I don't see MedTek arguing that we should take it easy on Burzynski to spare his patients, just that we should refrain from putting the patients down for wanting to believe in him. Be wary of succumbing to your own sense of self-righteousness - I personally see no benefit in heaping scorn on scared and desperate people who are grasping at straws to save themselves or a loved one. Fear and stress can cloud anyone's better judgement, and Burzynski plays on that to rob people of large sums of money and the precious time they have left to live. Absolutely we should keep hammering at Scammyslaus Burzynski and exposing the lies he tells to vulnerable people, but being nasty to his victims is just playing into the stereotyped view of skeptics they hold.

By Edith Prickly (not verified) on 12 Feb 2013 #permalink

Edith- correct.
I'd like to avoid all reference to patients if we could, however sometimes it's unavoidable. I was really uncomfortable with Orac's assessment of little Amelia's MRI results, perhaps that was necessary but it did make me twitch a bit. We do see it time and time again where Burzynski reports a positive result only to later find that not to be the case. A Burzynski private patient was recently mocked on twitter by a Burzynski supporter for actually stating this aloud.

That's useful information, part of his M.O. How can you point this out without referring to patients' self reports? In the absence of any useful publication, you can't. But man, it's difficult.

When it comes to patients and parents opting for CAM, I think how one approaches it should vary depending on the situation. If the person is simply desperate for something, anything, to help, it may be more appropriate to take a softer approach. If there is imminent risk of serious harm as a result of the CAM, perhaps something a bit more firm. If they persist in CAM even after copious explanations of why that modality does not or has not yet been shown to work, one can be firmer yet. But if they are actively promoting it, beyond all evidence that it is reasonable, then calling them out and risking hurt feelings is, perhaps, warranted.

@prn

What system would you put in place of the current one? If you think the system is too slow, perhaps you should go back and take a look at early AIDS treatments. Those suffering from AIDS clamored for a solution, complaining about how slow the process was. The FDA heard their complaints and sped up approval of AZT. As it turned out, there were some very significant side effects of AZT that made the whole risk-benefit balance dodgy. Many of those who had asked for it to be approved faster realized, and admitted, that maybe a bit more time should have been taken to improve its safety.

Fast approval and safe approval is a very, very fine line. And there are some processes in science that simply cannot be rushed, because nature just doesn't play by our timelines.

@DW - Mama Mac's post reminds me of the infamous Burn Book from the movie Mean Girls, only less mature.

By Edith Prickly (not verified) on 12 Feb 2013 #permalink

Todd W.:

And there are some processes in science that simply cannot be rushed, because nature just doesn’t play by our timelines.

Exactly. It still takes one woman about nine months to grow a baby. You cannot speed up the process by getting nine women to grow one baby.

Although both sides stigmatize the other, I think the reason they have to demonize us comes down to the implications behind "you don't accept X because you don't want it to be true" when X is something obviously and plainly good. This is where wishful thinking has an advantage over scientific skepticism. The things you wishfully wish for are always good things. Scientific skepticism is forced to follow the evidence where it leads.

So when skeptics see the other side in terms of "they're stubborn because they don't want a negative thing to be true" we don't have to go after their character on that. They're making mistakes because they're guilty of poor reasoning. They're wrong. They don't have to be wicked.

But we have to be both wrong and wicked if we don't believe in Burzynski/homeopathy/ESP/God not just because the evidence isn't there -- but because we don't WANT it to be true. We'd rather people die of cancer than be wrong. That's where they have to place us.

The anti-humanist approach is an anti-science one, and I think it can be summed up by the old quotation "For those who believe -- no evidence is necessary; for those who don't believe -- no evidence is possible." Knowledge is not seen as the result of a process; it's the result of who you are. Instead of testing hypotheses and arriving together at tentative conclusions, the issue is thrust romantically into the view that we know things by being the right kind of person. You have to want things to be true before you can reason correctly. Faith over reason.

@ Sastra :

Agreed.
I would add that there is a great emotional element involved, as well as building self-esteem and brushing off damaged feelings. The beliefs of those I survey- especially the contrarians- have psychological benefits that surround
their own needs to feel better about themselves by deprecating those they feel are "elitists" or unfairly rewarded by society.

An old feminist psych study asked subjects why a ( ficitonal) female character found herself at the ' top of her class in med school'- the answers often say little about her ability or hard work ( unlike those when the character is male) but focus on cheating, she's not a "real woman" ad nauseum.

People may believe what makes them feel better.

Ooops. I have to run.

.

By Denice Walter (not verified) on 12 Feb 2013 #permalink

people seem to think hornswoggling is no longer an issue, we're all sophistos and above a good swoggling

By al kimeea (not verified) on 12 Feb 2013 #permalink

prn sez: "I don’t think medicine makes thorough use of the science and technology that are available"

Do you mean the science and technology of homeopathy, applied kinesiology, live blood analysis, and Hulda Clarke zappers?

ABC: If you have a cure for high blood pressure go win yourself a Nobel prize

I read ABC's comment #9 as anti-quack sarcasm.

By herr doktor bimler (not verified) on 12 Feb 2013 #permalink

Just so. I enjoyed the link to RI 2005 and links therein. Shills, zombies & killjoys, oh my.

I think the conclusions found in Seth Kalichman's book, "Denying AIDS," while focused on that particular topic, are applicable to the wider number of people in the "alt-med" crowd. To me it's not out of character that AIDS denialists tend to be believers of "alternative medicine." I recommend his book for some insights on the thinking of these people.

By Tom Herling (not verified) on 12 Feb 2013 #permalink

Alties don't understand that you can take thousands of "real" scientists, unrelated and independent, from all parts of the world, lay out all the alt-med arguments for anti-vaxxine or Burzinsky, and these scientists will uniformly and independently shake their heads and say "what are they talking about?" at the least; or "quackery" at the most. Their training and understanding of the real science, of the unbelievable complexity of the human body and what it takes to obtain real evidence, brings them to consensus every time. It has nothing to do with "sheeple" and everything to do with knowing what you're talking about because you actually DO the science.

The problem for real medicine is that when a lay person becomes ill, it's very difficult to explain in a nutshell every complexity involved. Alt med, vaccine-causes-autism enthusiasts, etc. succeeds because there are more simplistic explanations that everyone can understand; so they feel as though they really did become educated and control of their own health. One of the mantras of my woo loving sisters is "it's common sense!". They have no concept of real evidence and real bias.

Ism, you're correct. Unless a person studies they probably have unrealistic ideas about what is involved.

The quacks- and other alt med prevaricators- also work hard to convince their audience that they- the quacks et al - ARE experts and able to criticise the entire field of medicine ( they usually are faux-experts in psychology )- they also "teach" their audiences 'science'.

A quack may go into great detail about his ( or her, but usually his) own studies and research as well as the opposition the 'Orthodox ' world has displayed towards them. Alt med is interdependent with conspiracy mongering-they lead a symbiotic existence because woo needs to explain why its brilliance is not accepted by the mainstream by consensus- there has to be something opposing its assimilation into present day, state-of-the-art SBM.

Obviously the entrenched powers-that-be would be put out of business by these ground-shattering innovations: large enterprises would be replaced by new businesses that supplied the non-pharmaceutical technology. So these companies fight the scientific rebels tooth and claw in order to save their own economic skins.

We see woo-meisters thus expand their own area of (IN) expertise far beyond medicine into economics and politics to explain HOW the conspiracy that cut them out of their rightful place and success has come about. Usually the governments of the western world are implicated to explain how the dastardly deed was brought about and how the media spread the word. People like Jake and Gary and Mike spend a lot on time explaining the conspiracies that explain why woo is not accepted by everyone.

MY question to any alt med sympathiser is:
how can your informants- who often may be barely literate- be able to critique the entire structure of complex, multi-faceted fields like medicine- AND then be presumptuous enough to go far beyond that into social sciences?

No real expert would go that far a field.
They do because they don't know what they're talking about.

By Denice Walter (not verified) on 12 Feb 2013 #permalink

Ism: The other Altie mantra is "Have an open mind" when they, themselves, are totally closed to any sort of credible evidence.

prn - People react negatively to you because you've been regurgitating the same swill for years.

As was mentioned above, AZT was rushed through, and people died as a result.

In response to 'blah blah insurance wah wah testing takes too long' I have two questions.

1. Are you aware that the world extends far beyond America's borders?

2. Would you travel in a plane that had not been through performance trials and safety tests?

Sometimes it's like you're stuck between a rock and a hard place. Personally, I aim to tell the full story as honestly as possible but at the same time, don't want to be disrespectful or confrontational to patients or their families and try to avoid contacting them or linking directly, even though they might have already made the decision to go public in order to fundraise. So I generally avoid linking directly until it's got to the point where that person is publicly criticising the clinic. At the same time, I don't want to cherrypick, but I can still mention patients with positive stories in criticisms of the media (usually the local press), when they have been found to be publicising Burzynski by printing quick and easy personal interest stories which serve the purpose of advertising the clinic.

The standard response from the Burzynski supporters (@BurzynskiSaves, generally speaking) is to accuse critics of cherrypicking (by avoiding linking to patients' fundraising campaigns) and often to then cc patients in on the conversation, and if you reply and still include the patient, to RT and make it look as though you are "attacking" patients.

Accusing skeptics of attacking patients is a useful tactic for them because it's about all they've got. They might be able to dredge up the odd tweet, the odd tactless remark, or use some justified anger and twist it to make it look bad. This happens time and time again because of course, they are not able to provide evidence of the safety or efficacy of ANPs, or to explain any of the other many, varied, convoluted legal and ethical problems being brought up by skeptics.

By Josephine Jones (not verified) on 12 Feb 2013 #permalink

seeing Merola accuse us of 'not being open to rational discourse' fried another one of my irony meters

I'll bet that, for each year's worth of blogging, you must spend a small country's GDP in irony meters.

By Xplodyncow (not verified) on 12 Feb 2013 #permalink

@ Josephine Jones:

You're doing very important work. Thank you.
And more power to you.

By Denice Walter (not verified) on 12 Feb 2013 #permalink

Melissa G So… we’re trying to take away their freedom– to get conned?
Taking away peoples rights to decide for themselves, to try to do better than incomplete and often corrupted information processes that apply poorly to individual cases.

Also the ability bargain for a better price than debt slavery. Medicine still has areas where both cost and performance can be changed by an order of magnitude by intelligent investigation and synthesis. Literally life and death stuff.

Todd@27 Fast approval and safe approval is a very, very fine line. And there are some processes in science that simply cannot be rushed, because nature just doesn’t play by our timelines.
Todd, often there are good, useful answers laying all around us, unused for non technical reasons. I would rather have more voluntary approval systems, like UL or Good Housekeeping.

JBustdNuts@33: prn sez: “I don’t think medicine makes thorough use of the science and technology that are available”
JN:Do you mean the science and technology of homeopathy, applied kinesiology, live blood analysis, and Hulda Clarke zappers?
No thanks, you can keep those. I mean better technology, techniques and results orientation.

elburro@40 prn – People react negatively to you because you’ve been regurgitating the same swill for years.
Ok, so there are some resentful, insolent slow learners here.

1. Are you aware that the world extends far beyond America’s borders?
perhaps better than you do

Would you travel in a plane that had not been through performance trials and safety tests
Wrong analogy. Medicine is NOT nearly that objective, well defined, tested or performing.

Watching clinical medicine prattle about science can evoke images between the Cargo Cult, and the WWI generals that pushed another million people through the meat grinder with outdated tactics.

What better technology and science, specifically?

Objective, well defined and tested? Emily Rosa.

By al kimeea (not verified) on 12 Feb 2013 #permalink

Melissa G So… we’re trying to take away their freedom– to get conned?
prn replied: "Taking away peoples rights to decide for themselves, to try to do better than incomplete and often corrupted information processes that apply poorly to individual cases."

And how exactly is consumer protection supposed to work in your paradise? Because if you're relying on the consumer having perfect information, frankly, I don't see that happening. You seem worried about medicine's slowness, imperfections, and "corrupted information", but what about the outright frauds actively trying to part people from their money with no return value?

By Melissa G (not verified) on 12 Feb 2013 #permalink

To continue the line of discussion raised by prn...
Imagine a sort of consumer-sourced form of medical feedback, where people confronted with a medical condition with a poor prognosis could report on their own results from non-FDA-approved treatments.

A mate of mine, when his colon cancer recurred, experimented with vitamin-C and a mushroom-based chemical. He had the advantage that his antibody levels were being monitored, so that the times when he was taking the treatments and the times when his pills were placebos could be compared to see if they had any effect on his metastases... in the event, they had no effect in Paul's case, but he figured that the information might be useful for other people.

Is that similar to your line of reasoning, prn? See what works?
Two challenges occur to me. First is to stop unscrupulous people from gaming the system -- the Burzynskis of the world on one hand, and Bad Pharma on the other. Second is to stop the crowd-sourcing contributors' own biases from influencing their feedback.

By herr doktor bimler (not verified) on 12 Feb 2013 #permalink

If I understand rightly, prn wants a wide-open medical system where, every time someone comes up with an idea, it is not first tested and then cleared for sale by some agency, but is rather thrown out to be used or not by the public; and where regulators don't ensure genuineness and quality control of products, but rather anyone can produce their own versions and offer the lowest prices.

This is a classic "consumer is king" scenario; but it supposes consumers having more power than they do in reality. Could everyone really rely on their own research to make good decisions, aided only by organizations with no regulatory power like UL or Good Housekeeping? And is the power of the free market, aided (perhaps) by lawsuits in cases of blatant malfeasance, sufficient to ensure that manufacturers do their job well? The history of the 19th century, before regulation, suggests that the answer to both those questions is emphatically no.

Furthermore, current research is tending toward an understanding that in most cases, premarket controls are more effective than postmarket penalties in raising quality. The main caveat is that regulators have to be independent of those they regulate, which government sometimes fails at.

UL is a gov't approved agency falling under some branch or other

By al kimeea (not verified) on 12 Feb 2013 #permalink

@ MelissaG - Snake oil never seems to be part of the equation, at least not the one one has faith in. That one over there? That's scientifically impossible. Caveat emptor rings callous.

By al kimeea (not verified) on 12 Feb 2013 #permalink

UL (Underwriters Laboratories) is a safety consulting and certification company headquartered in Northbrook, Illinois... established in 1894 and has participated in the safety analysis of many of the last century's new technologies, most notably the public adoption of electricity and the drafting of safety standards for electrical devices and components.

UL provides safety-related certification, validation, testing, inspection, auditing, advising and training services to a wide range of clients, including manufacturers, retailers, policymakers, regulators, service companies, and consumers.
UL is one of several companies approved to perform safety testing by the US federal agency... (OSHA). OSHA maintains a list of approved testing laboratories, which are known as Nationally Recognized Testing Laboratories.

Herr doktor bimler.
An aggregate record (with PCP?), with much better patient records for treatments, blood, biomarkers and images could form a better elemental series of data for meta analysis. This is where insurance sponsored research could have made a difference, even for self experimentation.

Second is to stop the crowd-sourcing contributors’ own biases from influencing their feedback.
As long as we can track death, things should not get too out of whack on catastrophic illness with overall survival curves to bound claims.

More complete individual datasets can be powerful if applied broadly. What is sad is that only new molecules get much attention.

Gamers?
Sunlight, good competition and fraud suits/prosecutions are the principal tools, kind of Gresham's law in reverse (good version displaces inferior), *in a free society*. When Gresham type law prevails (bad providers drive out the good), something is wrong with the society or laws. However, it has never been easy with strong promotional talent or messianic gone astray.

prn -We could call your new system 'The Galt Protocol'* As we know, the free trade of ideas, products and information such as you describe, is simply impossible to subvert.

Death is your pass/fail indicator, seriously?

First - There are horrific health conditions (including some cancers) where death from the effects of the disease can take years, even decades. So using patient death as a black mark against a product might mean sanctioning something like ANPs if the initial test subjects were afflicted with cancers that are relatively indolent at first, only metastasising (and leading to death) ten or twenty years later.

Second, using patient death because of a drug as an indicator of quality (or lack thereof) is also flawed. There are dangerous and disruptive side effects that aren't deadly, and also there's the point that correlation does not imply causation. (see AoA, JABS, TMR etc). How would you prove that a subject/patient died because of the test drug rather than an underlying medical issue, or pure coincidence?

Finally, gaming your system would be easy. Using such a system to evaluate ANPs would show many "success" stories. These apparently successful cases would include patients who had the type of cancers that can be tackled by surgery or radiotherapy. What would stop unethical researchers from putting forth subjects, or from True!Believers! of the treatment from self-selecting to be studied, without disclosing surgery or radiotherapy from >six months prior?

Don't forget the dexamethasone scam either. Pumping brain tumour patients full of glucocorticosteroids (a là Burzynski) can produce scans that appear to show that the patient is tumour free. How would your system deal with that?

BTW - Your constant mentioning of health insurance funding this, and [US agency of choice] evaluating that, puts the lie to the snide little remark you slithered out in response to the first question I asked upthread. You're so totally mired in the US system that the only ~radical~ ideas you have are based on said system, as well as conveniently ignoring the inherent faults within it. But then that's how Randroids roll, isn't it?

*I think Ignatius J Reilly is a more fitting literary comparison to you,

The kind of arguments coming from prn, which seem to essentially be "get rid of regulation and let the market manage itself" are old. Really, really old. I mean, we tried that for quite a while. Know what we got? Regulation. The market cannot govern itself. Take a look back at history, circa 1890s-1906+. Every regulation that we have came about because the marketplace failed to protect consumers.

elburro - I wasn't proposing a system, I was commenting on the nature of a free(r) society and indicators where it deviated into trouble.

You're so eager to assume and attack me, you just make up sh-- as you go along. Even Orac could tell you I might not be so mired in the US medical/insurance system after all. What I see are pathological, costly US medical models of failure being exported, and I don't like it. So I comment on representatives or sources of the problem, like the US FDA.

"...catastrophic illness" as in death is coming soon, was what I addressed, with Overall Survival as a hard measure to back up to any other measure.

If terminal patients can't be allowed total freedom to choose the treatments that they will afford, then claims of a free society are more bogus than any buffoon you can name.

Stuff words in someone's mouth and stab them. Pseudoskeptic über alles.

"Every regulation that we have came about because the marketplace failed to protect consumers."

Shhh!!! You'll upset Ron Paul, and he'll sic a U.N. agency on this website to take it over (like he's attempting with ronpaul.com).

By Dangerous Bacon (not verified) on 13 Feb 2013 #permalink

Vasha@48
One of the problems that I have experienced, is that superior foreign drugs that have gone generic overseas STILL aren't available in the US or were delayed by decades and then priced as if new. This has happened to my family several times.

And one may not even be able to travel to the US with a clearly life saving foreign drug that cannot be switched to an inferior FDA approved version without problems or risks.

...regulators have to be independent of those they regulate, which government
sometimes fails at.
....usually fails at. It's called "regulatory capture."

Todd@53 Every regulation that we have came about because the marketplace failed to protect consumers.
...or the legal system failed to do its job on torts and frauds. Poor, reactive legislation may be like cumulative radiation damage that eventually kills the organism. In part the "regulatory capture" thingie is a sure poison.

I wonder how a freer market would handle Thalidomide? Even after tests it appeared to have horrible side-effects. At least after this, medicines were tested even more thorougly. Prn would turn this back? Let the consumer decide?

OK, there's a 74 year old man, Tom, diagnosed with stage 3 NSCLC; he sold his business a few years ago and moved to the country; he is under ((shudder)) socialised medicine, so no money worries.

What's he to do? Start doing internet research to find the most appropriate treatment ? Inquire over the alt med blogs to find what's cooking in Thailand or Hong Kong? Mail order drugs that aren't approved where he lives?

I should mention that he was diagnosed when he came down with pneumonia and couldn't breathe ( Nov 2012).
And he may have been brilliant at running his own business but he never studied biology or medicine.
How realistic is it to play games when you are seriousy ill?
(-btw- a real person. my cousin)

By Denice Walter (not verified) on 13 Feb 2013 #permalink

*I think Ignatius J Reilly is a more fitting literary comparison to you,

The health care system does not need regulation, just some proper theology and geometry!

By Edith Prickly (not verified) on 13 Feb 2013 #permalink

The free market could only self-regulate if everyone involved was a perfect Mary Sue nexialist with expert critical thinking skills, time to spare, and other resources needed to do all their own research. This is not a realistic view of humanity, and not how I'd want to live. I want division of labor so that I can safely rely on experts to do their work if I want to, so that I can spend my free time doing things I like.

I'd think such a system would produce more bean-counting: It's not about the danger, it's about how widespread the knowledge of that danger is, and how that knowledge will affect sales figures.

It's also not about how effective a treatment is, it's about how many marks you can trick into thinking it's effective. This situation would be a dream come true for quacks who know that they're quacks. That's often a big problem I see whenever someone talks about deregulating the medical industry: It never seems to occur to them that medical fraud is both easy and profitable, and would become widespread for those reasons.

By Bronze Dog (not verified) on 13 Feb 2013 #permalink

There is an odd idea out there that only the people who share the same views as you should be allowed to read or say anything about what you write. Where do this sense of entitlement come from? If you post it publicly, it's not off limits to discuss it: if you don't want it discussed by others, don't post it!

The same people who scream about health freedom are the ones who also insist on destroying freedom of speech.

2 random thoughts:
Recently had to explain to someone I thought they were getting ripped off by a business. One the one hand I felt extremely bad for them because it means lost money and lost emotional investment. On the other hand I felt glad because they are now more aware of what to look for with scams, and can do their best to make plans and keep documentation, etc just in case they actually are in trouble. I apologised so many times even I got sick of hearing it, and the other person was actually glad to be informed about this potential problem. What's worse is the person felt like they were at fault, and I had to remind them that if someone falls for a scam, the guilty party is not the victim. (If I sound like an evil, callous person, then I obviously am needing a new dictionary) I agree with Medtek and Todd W in that the manner in which you do this makes all the difference. (@Will, we should be polite and tactful to victims or potential victims, but we should raise hell when dealing with the suppliers of woo)

Secondly, this week I was saddened to overhear a family member recommend another family member (regulars will recall I mentioned this provider) who offers woo. Literally shilling over the phone to someone about them.

The second makes me feel worse, because you don't want people to get hurt; in the first case the person may be hurt but at least he has all the information he needs to make up his own mind as to what to do.

And that, my friends, is our goal - people should have all the info, not just some.

Keep up the good work!

Oh, and if I end up in Merola's film because Squidymus is actually involved somehow, I'll be laughing... because it'll just prove how ridiculously bad they are at offering facts.

And what's with the continued barking about being in attics and parent's basements. You'd think they'd grow out of the high school mentality that people with computers are somehow second-class citizens.

@Eric Lund

There are some alt-med modalities that an educated layman should be able to figure out are bogus, such as homeopathy (anybody who has taken high school chemistry should be aware of Avogadro’s number)

I didn't learn Avogadro's number at school, but then also didn't know what homeopathy was. I just assumed it was 'natural' herbs, unprocessed as compared to synthetic medicine. I suspect that's how it gets under the radar for most people.

@MedTek

It’s all part of the campaign to paint the people shining the light on Burzynski as evil and anti-patient.

One thing I've learned is that if you're a good, ethical business, you don't need to fend off critics, nor do you need an anti-critic PR campaign. You just get on with your work.

@flip

And what’s with the continued barking about being in attics and parent’s basements

Damn straight. I have my *own* basement, thank you very much.

You mean you guys get paid to do this? Where can I apply to become a paid shill for the pharmaceutical industry? ;)

PRN,
Your proposed ideas about de-regulation sound a lot like the breast cancer patient support forum I visit. There are two sub-forums specifically for woo ("alternative" and "complementary") where, in effect, no questions are allowed and anything goes. Basically, any sort of "regulation" by posting of evidence-based information is disallowed.

What you end up with is a forum full of breast cancer patients (or poseurs) advising each other to avoid the evil cut-burn-poison that "orthodox Western" doctors offer, and instead to self-treat their breast cancer with laetrile, oleander, compounded hormones, vitamins, coffee enemas, iodine, and all sorts of other nonsense you can imagine (and some you couldn't!). They swear by their "naturopathic oncologists" and their mail-order scammy pathology labs. They advise each other (prescribe?) on specific treatments, dosages, supplements, and products, with accompanying sciency-sounding claims of efficacy and cherry-picked data. They promote misinformation, conspiracy theories, scare tactics, and miracle cures directly to a huge forum of breast cancer patients.

Can you really not see the harm in this one specific example of "free-market" health information?

UL (Underwriters Laboratories) is a safety consulting and certification company headquartered in Northbrook, Illinois…

And the Good Housekeeping Seal, one of the strangest invocations I could imagine in this context short of the Better Business Bureau, is an advertiser-driven limited-warranty operation.

Your proposed ideas about de-regulation sound a lot like the breast cancer patient support forum I visit.

Seems to me that people are self-experimenting anyway (here "experimenting" is a term of art meaning "engaging in a certain amount of magical thinking"). If some internet infrastructure could be constructed for recording and collating their results (as I was thinking aloud in #47), that might address some of prn's concerns, while obtaining some information... in the cases where the unrecognised treatment has *some* foundation and is not Black Salve or Magical Iodine or whatever.

I am deeply skeptical that this would work (given the signal / noise ratio), but a few years ago I was equally skeptical that a community-based data-pooling system like Wikipedia could ever become a useful resource, so my skeptical intuitions don't mean much.

I do not know whether prn wants to *abolish* the FDA (which seems to be the general response), or is interested in a kind of parallel system. Anyway, tthis is thinking aloud, from someone who does not have a poor-prognosis condition (apart from age) and can afford to regard it as an intellectual game.

By herr doktor bimler (not verified) on 14 Feb 2013 #permalink

Slight diversion: the Wall St. Journal today published letters in response to its recent op-ed, "Rolling Back the War on Vaccines". Most of them agreed with the premise of the article (that better education of parents is needed to overcome resistance to immunization). One puzzling response came from a professor at the UC-Irvine med school, Frances Jurnak, who says the article ignored "the elephant in the room" (rare serious harm due to vaccines) and that "rather than spend money trying to convince parents to ignore the potential harm to their own children", we should use money to determine which children are at risk and ways to safely vaccinate them (sort of an educated version of "green our vaccines"). My open letter to Dr. Jurnak:

Dear Dr. Jurnak:

I read with interest your letter to the Wall St. Journal (published today) in response to the op-ed about antivaccine sentiment ("Rolling Back The War On Vaccines").

I can understand how someone chooses to focus on rare serious side effects caused by vaccines instead of mentioning what others consider the "elephant in the room" - much more common serious effects of vaccine-preventable diseases.

What puzzles me, however, is your suggestion that we should spend money on improving vaccine safety _instead_ of encouraging parents to get their children immunized. Are these two goals mutually exclusive? I don't believe so - and in fact there is a great deal of continuing research on how to ensure that vaccines are as safe as possible (a PubMed literature search turns up more than 11,000 papers dealing with the subject).

We are never going to make vaccination (or any medical intervention) 100% safe, as I'm sure you realize. Seeing as how vaccination has been a hugely successful public health initiative and has an excellent safety record, arguing against efforts to promote it on the grounds that it should be utterly devoid of risk seems counterproductive to me.

By Dangerous Bacon (not verified) on 14 Feb 2013 #permalink

May I re-introduce the Wakefield-v-BMJ et al libel action in Texas. This seems to have ground to a halt. It's at Appeal stage, here's the link to the court record: http://www.3rdcoa.courts.state.tx.us/opinions/case.asp?FilingID=17395 which should by now have seen the appellees' response filed by February 4th, but nothing reported actually since oral argument request lodged by appellants on January 4th. Has that caused an hiatus? Are there any familiar with Texas appeal court procedures out there, or maybe actually know what's going on? Total silence.

By Brian Morgan (not verified) on 14 Feb 2013 #permalink

Herr doktor bimler,
In a perfect world, the database of self-reported results of alternative treatment might fly, but in the real world, it would be about as meaningful as VAERS. On the alternative forum at BCO, they report results like tumor size measured by school ruler or what their "gut" tells them, or their lab results from scammy mail-order labs like Doctors Data and others.

The thing that really gets to me is that most of the people posting there (supposedly being fellow cancer patients) and promoting these "alternative" therapies just so happen to be affiliate marketers or sellers of woo themselves.

Hello, I wish the two sides of the argument were not viewing this as a 'war'. I believe you and your commenters are sincere and informed individuals but I don't agree with all you say. In my humble opinion there IS evidence for SOME people being harmed by a vaccine - for example: http://www.reuters.com/article/2013/01/22/us-narcolepsy-vaccine-pandemr… and therefore there exists the possibility that vaccines are neither 100% safe nor effective even given the fact that vaccination is capable of preventing certain diseases.
However, if you consider the annual 'flu jab there has been scientific evidence that it is nowhere near as efficacious as we are led to believe: http://www.kare11.com/news/article/994888/391/U-of-M-study-challenges-e… so why try to persuade everyone to be vaccinated every year? The manufacturers can only guess at which strains will 'attack' us anyway. Where I live many people have had flu-like symptoms whether or not they were vaccinated. In my family no-one has the ';flu jab but we haven't had 'flu for many a year either.
It also concerns me that young babies are being injected more and more and often against several illnesses at a time. Has anyone (apart from so-called quacks) researched the longterm effects of this on a child's development?
The incidence of some childhood diseases may have declined since the introduction of vaccines but the incidence of autism and other developmental problems seems to have increased. Is this just a coincidence? Why not seriously try to find out?
Many doctors accept - dare I say 'blindly' -that vaccination is the best thing since sliced bread but in the recent case of the whooping cough vaccine for pregnant women even the makers own website stated that it was NOT RECOMMENDED during pregnancy because they had not researched the effect on foetal development. Yet doctors were promoting it as a wonderful way of preventing whooping cough. Don't they have time to read the smallprint??.
Quite honestly, until or unless someone can PROVE that it doesn't do any harm I'd rather not pump a baby full of chemicals/dead viruses etc.
But I do believe that everyone has the right to make their own informed decisions about healthcare . I respect your views on vaccination and I hope we can agree to disagree in a civilised fashion.

By sablonneuse (not verified) on 15 Feb 2013 #permalink

therefore there exists the possibility that vaccines are neither 100% safe nor effective even given the fact that vaccination is capable of preventing certain diseases.

Only fools would think anything is 100% safe or effective: scientists and doctors never state this anyway.

As for the rest of your comment, try reading the other posts here on vaccinations. You'll find all your questions and more have already been dealt with. Your whole comment in fact is a regurgitation of every single anti-vax talking point ever invented. Including a "prove the negative" fallacy.

Well, as I said, you have every right to make a choice but unless something is guaranteed safe (OK 100% is asking a lot) then I think there's no harm in considering carefully before accepting the risk. And what's wrong with expecting some research into the longterm effects of vaccinating babies with more and more chemicals? Do you honestly believe that there's absolutely NO harm in giving more and more shots? Don't you think we should find out just how much of a risk there is?
Anyway, as flic has dismissed my comments as worthless I suppose I've poked my nose into the wrong website. Sorry!!

By sablonneuse (not verified) on 15 Feb 2013 #permalink

The incidence of some childhood diseases may have declined since the introduction of vaccines but the incidence of autism and other developmental problems seems to have increased. Is this just a coincidence?

Not a coincidence but instead the result of a number of factors unrelated to vaccination:broadening of diagnostic criteria, diagnostic substitution, increased surveillance, etc.
You actually describe what's happened quite accurately by your use of the phrase "seems to have increased"

Don’t you think we should find out just how much of a risk there is?

How do you propose we could more accurately determine this, beyond what is already done for every new vaccine developed? Be specific.

@sablonneuse, your comments are not worthless; the topics you mention have been addressed repeatedly in postings on this blog.

By Mephistopheles… (not verified) on 15 Feb 2013 #permalink

Hello JGC: I just can't help wondering if research results may be 'tweaked' to minimise the possible connection between adverse effects and vaccination. Perhaps that's being cynical?
In the recent blog concerning Shaken Baby Syndrome it seemed as though everyone was dismissing the possibility that, in a particular case, the baby's symptoms could be attributed to vaccination (and looking at your arguments I'm inclined to agree with you) but that doesn't mean that in ALL cases the child has been physically abused. If the pertussis vaccine has been used experimentally to induce similar symptoms in animals then is it impossible that the vaccine might also cause such symptoms in a baby? Wouldn't you agree that serious research into all such cases should be undertaken before continuing with the vaccine programme rather than stating categorically that the vaccine cannot be held responsible?

Mephistopheles: I'm afraid I jumped in at the deep end because this blog seems to consider everyone who is 'anti-vaccination' as 'the enemy' and/or completely stupid. I admit I haven't read many postings but since all the comments I have read seemed to suggest this opinion I simply had to write a comment putting another point of view. Didn't mean to stir things - simply have a civilised discussion -but I'm out of my depth aren't I?

By sablonneuse (not verified) on 15 Feb 2013 #permalink

@sablonneuse - you're not out of your depth, its just that we've been over these topics over and over and over again, with some particularly nasty anti-vax trolls, so we can get a little touchy.

I would recommend reading through the archives, where your points have already been addressed in great detail.

@sablonneuse

People may sometimes be a bit short on here because we've dealt with many of the same arguments over and over and over, often from die-hard anti-vaccine activists who just repeat the same things ad nauseam.

As for Shaken Baby Syndrome and vaccines, there are typically symptoms that exclude vaccines as a culprit. For example, broken ribs and/or bruising consistent with physical abuse. That's the kind of detail that those who like to blame vaccines for just about everything tend to leave out of their narratives.

@sablonneuse

I'm also going to shamelessly plug my site antiantivax.flurf.net/ as a good introductory resource into some of the more common anti-vaccine myths and misconceptions.

Todd,

I hate to invoke Mikey Adams's name, but just yesterday he repeated the nauseating bleating that "often" (his words) SBS is really vaccine damage. And we shouldn't be so quick to condemn parents accused of SBS. Just keeping the myth alive, huh Mikey?

Any child abuser or his/her lawyer who uses this defence in court (a la Yurkiw) deserves a very special place in hell.

By Marc Stephens … (not verified) on 15 Feb 2013 #permalink

Lawrence and Todd W: thanks for your explanations about the strong feelings of members on this blog. Todd,thanks, too for your link. I've read some of it already (but it's getting late here -nearly my bedtime). Personally I use both allopathic and homeopathic remedies and wish there could be more co-operation between traditional and alternative medicine. Here, in France many 'normal' doctors are also trained in homeopathy but, of course, there are others who disagree emphatically with alternative therapies. In my view people should have a choice of healthcare and there shouldn't be a need to 'take sides' and slag each other off.

By sablonneuse (not verified) on 15 Feb 2013 #permalink

@sablonneuse: you'll find homeopathy is held in rather poor regard here.

sablonneuse:

In my view people should have a choice of healthcare and there shouldn’t be a need to ‘take sides’ and slag each other off.

Which brings into mind this quote: You are welcome to your own opinions, but not to your own facts.

The healthcare choices should be made on facts, not opinions. Especially by those who are promoting their "medicine" through testimonies and other advertizing practices. There is not such thing as "alternative" medicine. If a treatment is found to work, it is just medicine.

What you need to do is look into the real scientific studies, and note that nothing is simple. I personally find the folks promoting vaccines as a cause of "Shaken Baby Syndrome" to be objectionable. My oldest had seizures as an infant, and there were no broken bones (and this was before he had any vaccines).

Another reading suggestion: Trick or Treatment.

@Sab - you do know that homeopathy is just "water" right?

If done properly, there shouldn't be even the tiniest bit of active substance in the solution, which means that you're just taking water.......seriously, that's basic science right there.

@Brian Morgan

Has that caused an hiatus? Are there any familiar with Texas appeal court procedures out there, or maybe actually know what’s going on? Total silence.

I don't think any outside observers know what's going on at this point. I originally assumed that it was the usual delay in updating the calendar, but it has been too long for that. It seems very unlikely that BMJ et al. would simply blow off a deadline. Perhaps I'll give the clerk a call on Monday.

Hello Chris and Lawrence: I do understand that many people oppose homeopathy because it's 'just water' but I can only speak from personal experience and it's a fact (for me) that homeopathy does work. However, I'm not sure it's worth recounting my anecdotal evidence because you are already convinced scientifically that it's rubbish. Here is a site that explains clinical trials http://www.healthy.net/Health/Article/Scientific_Evidence_for_Homeopath…. It is written by a homeopath but i think it gives an unbiased account.
The thing is, science has not yet discovered everything has it? One of these days the 'blind faith' of people who embrace treatments that can't be proved by scientific means - but still work - could be rewarded by a 'eureka' moment.

Chris: I absolutely agree with you that people who abuse children should not be able to get away with their crimes by claiming vaccine damage but if there is a sudden swelling in the brain of a child in a home with no record of child abuse following a series of vaccinations then I think it would be tragic if if the parents were punished when they were innocent. Surely it's worth researching the possibility?

By sablonneuse (not verified) on 15 Feb 2013 #permalink

@sablonneuse

Anyway, as flic has dismissed my comments as worthless I suppose I’ve poked my nose into the wrong website. Sorry!!

If you'd bothered to understand what I wrote, you would have realised that your comments are not worthless - just already answered. It means that we don't have to reinvent the wheel, and can instead direct you to use the search function. Consider it from our end: if every few minutes people ask the same questions, and we answered them, that's a lot of time wasted for everyone. Instead we can just point to previous discussions, and allow you to read at your own pleasure. It's better for you too, because you get your info from the original sources rather than reheated arguments.

As for your nirvana fallacy, nothing is 100% safe: do you drive? Drink milk? Cross the road? Eat? If so, why do you do those things when no one can 100% guarantee your safety?

More to the point, you seem happy to use homeopathy - what guarantees do you have that it's 100% safe? Do you have any evidence to say that it is? Do you approve of homeopathy for children - if so why, and if not, why not?

And just because science hasn't discovered something yet doesn't mean that X works. It just means that X hasn't been proven to work (yet or at all).

Lastly, has it occurred to you that the things you want researched have actually been researched?

Dana Ullman?!!! HAHAHAHAHAHA....

By Marc Stephens … (not verified) on 15 Feb 2013 #permalink

Sablonneuse, please explain why Dana Ullman cannot ascertain the homeopathic remedy for male pattern baldness.

#84 @LW

Chiefly because it's a substance diluted so much by water that it is, in fact, water.

I know you know, but the new guy might not.

It's easy to get taken in by homeopathy. I bought a homeopathic "cure" once by accident myself. It was right there with the real medicine.

#88 @sablonneuse

The placebo effect is very real and very effective. It's not a bad thing, either.

Though in the future you might want to go with placebos that might stand some chance of doing some small amount of good, such as a multivitamin, or a nice hot mint tea, which does clear out one's throat marvellously when one is congested. I suppose you could boil your homeopathic remedy for a similar effect, but I doubt it would taste as good.

That link sablonneuse provided is one huge stinking pile of woo. It's new to me. Every known form of quackery is represented, and every well-known quack is there. They reprint stories from "What Doctors Don't Tell You" (see Andy Lewis's Quackometer blog for more on that rag). Plus they'll train you to be a "wellness coach" for only $1395.

How do real doctors like this go bad?

William Pawluk, MD, MSc, is an Asssistant Professor at Johns Hopkins Medical School. He is a board certified family physician with training in acupuncture, nutritional/herbal medicine, homeopathy, hypnosis and body work. Dr. Pawluk has used magnetic therapies as part of his practice for over 10 years and is considered a leading national authority on the clinical application of both static and pulsed electromagnetic fields in the United States. He has published a book, Magnetic Therapy in Eastern Europe: a Review of 30 years of Research. He uses a holistic approach to treating the individual and applies the modality or modalities most likely to help, whether individually or combined

By Marc Stephens … (not verified) on 15 Feb 2013 #permalink

In other hair-loss news, a hilariously stupid entry courtesy of Natural News.

Many men turn to cures that promise amazing results in preventing hair loss, but usually these are nothing more than expensive scams that can damage health over time. There are, however, homeopathic and herbal treatments available that can slow down hair loss and encourage hair to grow naturally.

Now, let's think about this. What depilatory herbs do we have on the table? I shall use homeopathic "terminology" (actually, they may not have enough phony alchemical pseudo-Latin): Jun Com, Per Her, and Bup Rad, just for starters. Well, Dana? Seems like a simple enough test.

In general the European skeptic blogs like Quackometer attract the most fervent supporters of homeopathy, in many cases homeoquacks from India. They claim, unconditionally, that homeopathy is effective in *curing* cancer, AIDS, malaria and diabetes, among many other dieseases. I always ask them about Penelope Dingle. I've never gotten any answers.

If someone wants to take some magic sugar balls for self-limiting, short term problems like the sniffles or sore throat, I don't see much harm. Those ailments all go away in a few days with or without Boiron's expensive version of Tic Tacs. It's when people go to those "classical" homeopaths for serious diseases that I worry.

Good thing homeopathy is on its way out in the UK. The last homeopathic hospital in England is being shut down, the NHS has spoken out against it (calling it "rubbish") and even the head of Wikipedia has launched a war against homeopathy (and quackery in general).

By Marc Stephens … (not verified) on 15 Feb 2013 #permalink

...usually these are nothing more than expensive scams...

The only expensive scams Mikey Adams tolerates are the ones he sells himself on his website.

By Marc Stephens … (not verified) on 15 Feb 2013 #permalink

William Pawluk, MD, MSc, is an Asssistant Professor at Johns Hopkins Medical School.

Unsurprisingly, this is false. I'm not sure that one really wants to brag about being a "former assistant professor," either. It's somewhat telling.

From that same websitee, a posting from an ND homeopath called "Healing Sexual Abuse." I know a couple of victims of sexual abuse who would find this deeply offensive:

4) I have found constitutional homeopathic treatment to be immensely helpful to remove the layer of grief and shame caused by the abuse as well as any physical symptoms you may be experiencing. Homeopathy can balance you on an energy level from the inside out so that you are empowered to heal much faster and can shorten the length of psychotherapy considerably.

http://www.healthy.net/Health/Article/Healing_Sexual_Abuse/605/1

M-m-m-m-m...written by another Ullman. Married to a Robert Ullman. Has to be related to Dana.

By Marc Stephens … (not verified) on 15 Feb 2013 #permalink

Narad,

Yup, Pawluk has gone into business for himself. One of his websites is called "Illness Is Optional."

And guess what else?

Dr. Pawluk was asked to appear on the Dr. Oz Show as a medical expert on magnetic field therapy. The show, entitled “The Revolutionary Cure for Pain,” demonstrated on a national platform the healing potential that magnetic field therapies can produce. Dr. Oz also asked Dr. Pawluk to write two pieces for his website. These articles are available here.

Of course he sells a bunch of these magnetic gizmos ranging from $550 to $3250.

http://drpawluk.com/

By Marc Stephens … (not verified) on 15 Feb 2013 #permalink

William Pawluk, MD, MSc, is an Asssistant Professor at Johns Hopkins Medical School.

The extra S in 'asssistant' is for "Science"!
Googling for 'asssistant' + 'Pawluk" is a demonstration of the prevalence of cut-&-paste in alt-med circles, and the absence of spellchecking.

By herr doktor bimler (not verified) on 16 Feb 2013 #permalink

You’ve seen the video of the birthday party Dana put on for himself, right?

You know Dana, if I wanted to be taken seriously and dissuade people from thinking I was some sort of quack, I'd try not to dress up like a Wild West snake oil salesman who is wanted by the fashion police.

Thank you all for your replies. I will read other postings on this blog and the other links provided with interest but I may well refrain from adding any more comments.

By sablonneuse (not verified) on 16 Feb 2013 #permalink

The word "wellness" is a pretty sure sign that woo is afoot.

My local supermarket had a huge sign near the checkout saying "Welcome to Wellness". I suspected the worst, but saw that the accompanying graphic was of a large hot chocolate, with marshmallows floating in it!

I'm guessing that marketing just picked upon the buzzword, without actually getting it.

By sheepmilker (not verified) on 16 Feb 2013 #permalink

@Khani

@LW

Chiefly because it’s a substance diluted so much by water that it is, in fact, water.

I know you know, but the new guy might not.

Yes, I drafted that several times explaining why homeopathy is nonsense, but it always came out sounding kind of ... offensive ... and I didn't want to be offensive to the new guy. So I just left it as a warning in hopes that he wouldn't leap in to defend homeopathy and get jumped on.

LW if you were referring to me as the 'new guy' then thanks for being gentle on me. (By the way I'm female).

By sablonneuse (not verified) on 16 Feb 2013 #permalink

sablonneuse - the lady from the Petite Sablon?

By Mephistopheles… (not verified) on 16 Feb 2013 #permalink

@sablonneuse: pleased to meet you. Please do not be discouraged by your initial reception. Regular commenters here are really quite nice and friendly. Sometimes people like you come who are truly looking for answers -- but sometimes people come who claim to be "just asking questions" when they're really looking for a fight. So unfortunately you may get a little of the response that the other type provoke.

As to whether homeopathy works for you, it's actually sometimes hard to tell whether a given intervention really works. There are many confounders like the natural course of a disease, chance, expectations, the effects of other simultaneous interventions ... which is why scientists have to use elaborate techniques, such as randomized double-blind trials, to tease out real effects -- and even then they are sometimes deceived by apparent effects that turn out not to be real (or, to be fair, apparent lack of effect when the effect was really there).

There have been trials of homeopathy, and the better they are run, the less effective homeopathy appears to be. The conclusion is that, once you remove all the confounders, homeopathy has *no* effect. This is what we expect based on all basic science. But it might easily *appear* to work for you.

Putting that aside, consider this: homeopaths make grandiose claims, such as being able to cure AIDS or cancer, or to cure pertussis (whooping cough) in minutes, as one claimed on this site. Those are claims that should be easy to prove, if true. Yet they don't prove those claims and never have. That suggests that they can't, doesn't it?

I hope you enjoy this site. It's very informative and often entertaining. You don't have to comment -- I didn't for years after I discovered it.

Here's a quick summary of the case against homeopathy, at least from my perspective. Homeopathy is based on two principles that are, to put it mildly, unproven as general principles. These are:

- a substance that will cause a symptom in a healthy person will cure the same symptom in a sick person.
- the ability to cure is made stronger by successive serial dilution, shaking the solution at each dilution.

Because of the way such remedies (and I use the term loosely) are made, after 12 dilutions of 1:100 (one part previous solution to 100 parts solvent) it is unlikely that there is a single molecule of the original substance in a liter of remedy. At higher dilutions like 20C or 30C (as homeopathic remedies are labelled) it is an almost certainty that no original substance exists in any one dose; it would be pure luck that in a batch of, say, a billion doses there were one that had a single molecule of original substance.

Now, there are several competing theories homeopaths have proposed to explain this away. Generally they are contradicted by observations in chemistry, physics, biochemistry, and biology.

Of course, if homeopathy were to actually work - if, say, duck liver diluted to 200C actually did reduce the duration of flu-like symptoms in a meaningful and measurable way - then it might be worthwhile to continue looking a the supposed mechanisms for how it works. Alas, the larger, better controlled, better conducted studies have shown no effect that was distinguishable from placebo.

Note that in the world of medicine, as I understand it, and of science in general a product that works no better than a placebo would be considered ineffective.

Now, homeopaths have proposed a number of reasons why such better run studies can't really measure the benefits of homeopathy. None of those arguments are particularly convincing.

Thus, homeopathy is:
- based on principles that are unproven and unlikely to be true.
- not convincingly shown to work.

Now, there are products labeled as homeopathic that are much less dilute. For instance, a product called Yeastaway contains:

Borax 14X HPUS (Borax)
Calendula officinalis 1X HPUS (pot marigold)
Candida albicans 30X HPUS (yeast)
Hydrastis canadensis 1X HPUS (goldenseal)

At 1 part in 10, I have no doubt that some of the ingredients have an effect. Even the Borax at one part in 100,000,000,000,000 might reasonably have some effect. The Candida 30X is likely to be completely worthless. Now, whether these ingredients in these concentrations actually follow the principles of homeopathy I leave as an exercise for the reader.

By Mephistopheles… (not verified) on 16 Feb 2013 #permalink

@Mephistopheles O'Brien: "At 1 part in 10, I have no doubt that some of the ingredients have an effect."

Whether it's the claimed effect is another question.

@LW - I agree completely. I have seen no evidence that the product I mentioned is effective for its intended use.

By Mephistopheles… (not verified) on 16 Feb 2013 #permalink

In case you understandably find it hard to believe that anyone would claim that homeopathy can cure pertussis in minutes, I give you Jean:

Whooping Cough is easily fixed by one administration of a homeopathic remedy which works within 2 minutes but doctors are not using it ???

I recommended that she demonstrate that on camera with one of the infants in the California pertussis outbreak, which killed a number of infants, and we didn't hear from her again.

Mephistopheles and LW thank you for your very welcoming words. (I was beginning to feel this site had a lot of commenters with very strong feelings who didn't like anyone having a different opinion).
Of course I can see how totally unscientific homeopathy is and the case for it is very much hindered by unscrupulous 'practitioners' who make outlandish claims and also profit from patients' desperation.
As you must have realised by now, I'm not a scientist (that's why I'm interested in reading blogs which explain things in relatively straightforward language) but I do know several very sincere and well qualified homeopaths who do not exploit their patients and who, in fact tell them that they should speak to their doctor about what they are doing homeopathically. Of course, there are also times when the medical profession literally 'gives up' on a patient and then they turn to homeopathy (etc.) in sheer desperation. (I have personal experience of such a case. The patient was given 'a matter of months' to live and more or less told to go home to die. That was over ten years ago.)
Also homeopaths who claim to cure practically any illness don't do themselves (or their more honest colleagues) any favours but I happen to believe they can relieve the symptoms in many cases.
The problem with scientific trials is that (the way i understand it) homeopathy doesn't work in a 'one size fits all' kind of way. Apart from remedies like Arnica, which is widely accepted, even by sceptical doctors, as being helpful for bruising, it is usual for a homeopath to choose remedies based on each individual case -so what might work for one person may not work for another with similar symptoms. If a homeopath doesn't make the right choice then it isn't going to work! Therefore, homeopathy is very 'unscientific' and difficult to test so I can see why you're all so totally against it.
Even homeopaths themselves admit they don't know WHY or HOW it works but would they keep doing it if it didn't bring results? (And yes, I can hear you all saying AND MONEY!!! but the people I know derive far more satisfaction from their success than they do from the financial rewards - which are NOT that great )
Oh dear, I said I'd refrain from commenting. But a lady can change her mind can't she?

And no, Mephistopheles, I'm not from Petit Sablon in Brussels but I don't live far from Belgium.

By sablonneuse (not verified) on 16 Feb 2013 #permalink

@Mephistopheles O'Brien: "Now, there are products labeled as homeopathic that are much less dilute."

For instance, there is the homeopathic remedy, Zicam, which caused permanent loss of sense of smell because the dilution of zinc was not sufficient to prevent it from killing the sensitive cells in the nose.  According to homeopathic theory, the lesser dilution should have made the remedy weaker but, alas for the users, did not.

Or, for instance, there is the homeopathic teething remedy, Hyland's Teething Tablets, intended to be given to infants but containing dangerously high levels of belladonna.

@sable - one of the huge problems with homeopathy, is that if it "works" it actually violates several well-known laws of physics.....the fact that even homeopaths don't understand how it is supposed to work (besides very strange theories that have never, ever even shown an once of actual substance) doesn't bode well for the entire arena.

@sablonneuse: "And yes, I can hear you all saying AND MONEY!!! but the people I know derive far more satisfaction from their success than they do from the financial rewards – which are NOT that great "

I don't doubt that at all. It's the same reason that doctors go into pediatrics or family medicine, which are not at all the highest paid areas of practice: they just want to help. But, as I said, it can be very difficult to truly be able to tell whether an intervention is successful and it may appear to be so even when it is not.

As for your friend, I'm very glad he or she survived, but it is much more likely that either he or she was fortunate enough to experience spontaneous remission, which does happen, or experienced a late effect of treatment, which also happens, or even was misdiagnosed to start with, which happens more often than we would like.

The problem with scientific trials is that (the way i understand it) homeopathy doesn’t work in a ‘one size fits all’ kind of way.

That argument is made by homeopaths but it can be easily countered. Imagine that we have a homeopath examine each patient as long and as carefully as desired. The homeopath then prepares a bottle of remedy, liquid or pills, individualized to that patient. The bottle is labelled with a number and passed through to a researcher who looks up the number on a list and then either passes the remedy on unchanged or swaps it with an identical bottle containing inert liquid or pills. Neither the homeopath nor the patient knows which the patient received. We now have a randomized double-blind trial with individualized remedies.

I'm not a scientist either, but a lot of people on here are, and they can give a much higher-level explanation of practically anything you wish to ask about.

Speaking of homeopathy and individualized remedies, or Burzynski and his individualized cancer treatment, even the claim of individualized treatment doesn't get you off the scientific hook. 

Suppose two patients come to see the practitioner of ... whatever.  First Patient has traits A, B, C, and D, and is prescribed treatment X. Second Patient has traits B, C, D, and E, and is prescribed treatment Y. How did Practitioner know which to prescribe to whom?

It seems to me that Practitioner is just choosing remedies at random; is claiming magical insight (my intuition tells me so); is using magical thinking (First Patient has a lung complaint; this plant is shaped kind of like a lung; I'll prescribe this plant); or is relying on experience, personal or someone else's (patients with trait A seem to do better with X than with Y).

If the practitioner is choosing remedies at random, there's no reason to go there. Anyone can choose at random.

If the Practitioner is relying on intuition, what basis does one practitioner have for following another?  Maybe this one's intuition says to use X and that one's says to use Y, and who's to say which has better intuition?

But if the Practitioner is relying on experience, or even magical thinking based on something tangible, that can be tested via scientific trials.

It seems to me that such practitioners are on the horns of a dilemma: if their treatment is based on experience or something tangible, then it can be scientifically tested; if it isn't, then they themselves have no basis whatever for trusting it.

@sablonneuse you wrote

If a homeopath doesn’t make the right choice then it isn’t going to work!

In addition to LW's excellent description of a study design that easily deals with this objection, there is an obvious issue with that statement:

Any positive results - regardless of how infrequent - are the result of the power of the remedy. Any negative results - regardless of how frequent - are the fault of the skill of the prescribing homeopath.

I would like to think that homeopaths would like to know what the indications are which would lead to selecting the most effective of multiple possible remedies. I'd also think they'd want to know which of their possible solutions is more effective. So far, however, it doesn't appear much work is happening on those vital questions.

By Mephistopheles… (not verified) on 16 Feb 2013 #permalink

@ sablonneuse:

Bonjour!
There is a wealth of information about alternative medicine and why people believe at Quackwatch.

One of the simplest explanations for why people believe in things that don't - and can't- possibly work, like homeopathy, is because they selectively attend to confirming evidence and dis-regard information that does not confirm their belief.

Often, alt med remedies seem to work because they are taken when the person is experiencing a particularly bad episode of a cyclic condition- which would subside on its own- however because its amelioration co-incides with usage of the remedy, the patient assumes that the intervention caused the relief he or she felt.

A psychologist fed piegons on an entirely random schedule: he observed that the pigeons repeated whatever they were doing immediately prior to the feeding- bobbing their heads, turning in circles, etc- behaving this way increased as if the pigeons 'believed' that their actions would cause another feeding. Because it was intermittenly re-inforced, it continued even when it did not precipiate a feeding.

Superstitious pigeons acted in a way that had no connection to the desired outcome, just like the superstitious patients attributed their own relief of symptoms to homeopathy or whatever alt med remedy they used. And their belief was strengthened- just like the pigeons' were ( not that pigeons think and believe- but you know what I mean- I don't want to translate it into stimulus-response language).

Research seeks to eliminate these biases and many others. Although our minds create these obstacles to understanding how the world- and we, ourselves- work, it also has the capacity to peer into its own operational system and control for its flaws. Plus, we have statistics. Woo hoo.

By Denice Walter (not verified) on 16 Feb 2013 #permalink

Often, alt med remedies seem to work because they are taken when the person is experiencing a particularly bad episode of a cyclic condition- which would subside on its own- however because its amelioration co-incides with usage of the remedy, the patient assumes that the intervention caused the relief he or she felt.

Lest this seem to be dumping unfairly on alt med, the very same thing can happen with conventional medicine as well. That's why elaborate trials have to be used to tease out the real effects.

LW: yes, I can see this site is full of very well qualified scientists who could shoot down any of my 'arguments' in flames as I have absolutely no scientific background to rely on but, provided the explanations aren't too complicated it's a good reason to come back to this blog.
As for your reference to 'Jean' it's ridiculous to make such claims. No wonder homeopathy has such a bad name.

This is going to upset the scientific community but I think a good homeopath needs to use a certain amount of 'instinct' - a kind of 6th sense even - when diagnosing complicated cases so that wouldn't fit in with the Laws of Physics would it?! OK, now you all think I'm a bit of a nutter so I really will leave the comments box alone and content myself with reading . . . . . . . . . . .
Thanks for your help and patience!

By sablonneuse (not verified) on 16 Feb 2013 #permalink

@sablonneuse:

I think a good homeopath needs to use a certain amount of ‘instinct’ – a kind of 6th sense even – when diagnosing complicated cases

That's true of good doctors too. There's a lot of observation and reasoning that goes on below our conscious awareness, such that we can reach a conclusion -- even a correct conclusion -- without being able to say what led to it. That would certainly "fit in with the Laws of Physics".

sablonneuse, one of the authors of the book I recommended was trained in homeopathy.

You know Dana, if I wanted to be taken seriously and dissuade people from thinking I was some sort of quack, I’d try not to dress up like a Wild West snake oil salesman who is wanted by the fashion police.

Yes Dana, Willy Wonka threw away that suit for a reason.

By Edith Prickly (not verified) on 16 Feb 2013 #permalink

@Narad

Thank you for the link -- not. Now I'm going to have to scrub the image of that goshawful outfit from my mind's eye.

(Honestly...the 70's called. They want their jacket back).

Chris: I've looked at the book on Amazon (UK) and ordered it. Thanks.
Denice: Thank you for taking the time to respond. I see your point and I'm trying very hard to see both sides of the argument here. However, I still have problems accepting that homeopathy " can't and doesn't' work" because it appears to work for me. Perhaps, as you imply it's 'all in the mind' and that's perfectly plausible.
Mephistopheles: as I'm not trained as a homeopath I'm not qualified to answer your very interesting questions. But I have had a look at the Materia Medica used in homeopathy and there are literally hundreds of different criteria to take into account when prescribing a remedy. They also have to rely on the patients own perception and ability to explain their symptoms, combining this with what they themselves observe. They then have to choose from a large number of possible remedies with only subtle differences as well as deciding on the potency and frequency of the dose.
Then they have to rely on the patient to actually take the remedy as often as necessary.
One of the big problems facing us all is that there must be loads of homeopaths out there with the minimum of training and qualifications who are giving homeopathy a bad name.
Then there's the fact that scientists demand precision and provable answers which homeopathy simply can't provide.

By sablonneuse (not verified) on 16 Feb 2013 #permalink

@Sable - at the very best, homeopathy is placebo - at worst, it is used in situations where the patient should really being seeing an actual medical doctor (and the results can be very, very bad - including death, because the person refused proper medical care).

There is no plausible mechanism by which homeopathy can work - because at the end of the day, if the solution was prepared to "homeopathic" standards, there isn't even a single atom or molecule of the original "active" ingredient left.

Suffice to also say, if water had a "memory" I would think all of the "other stuff" that has gone through the water would overwhelm any miniscule amount of "active" ingredient that is utilized....you have a better chance of getting more active ingredients just by drinking water out of the tap (and that's free).

Take a step back and look at this from a scientific standpoint - there is no possible way that what homeopaths say they do, can actually be possible.

@Sable - if homeopathy can't figure out a way to prove its own results, I think that speaks volumes.....and given that homeopathy hasn't changed in the last 200 years, while modern medicine continues to make advances by leaps and bounds, should also tell you something.

Lawrence: looking at your 'water' argument there's no way I could disagree with that!

By sablonneuse (not verified) on 16 Feb 2013 #permalink

I'm wondering why Sablonneuse is ignoring my questions about the safety of homeopathy... Why trust homeopathy, but not vaccines? Especially if homeopathy is all about gut instinct?

Sablonneuse, I highly recommend you also take a little time to read about bias, and how people can convince themselves of things - sometimes without even realising it. Knowing how the mind can play tricks on you is one way to better understand what we're saying about your experiences and why homeopathy doesn't work.

Of course, if homeopathy were to actually work – if, say, duck liver diluted to 200C actually did reduce the duration of flu-like symptoms in a meaningful and measurable way – then it might be worthwhile to continue looking [at] the supposed mechanisms for how it works.

But we know the mechanism. It's dilution of a bacterium that doesn't exist in the first place.

Hello Flip: I'm not deliberately ignoring your question but I'm not sure exactly what you mean. If you're saying homeopathy isn't safe when people rely on it instead of 'going to see a proper doctor for a serious illness' then, of course, I agree it's not safe and any reputable homeopath should tell a patient to go to their doctor in that case. If you mean the incidence of side effects I would say that there are far more side effects from prescription drugs than from homeopathic remedies. A wrong remedy won't work but it's not likely to do any harm. In fact, if it's only water then it's got to be 100% safe! (unless the water is contaminated)
I don't see any problem with giving children a homeopathic remedy to relieve symptoms of minor illnesses but I don't agree with parents who reject conventional medicine out of hand.
I take your point about bias and freely admit than I do trust homeopathy for many health issues but that doesn't mean that I reject 'normal medicine.
As far as vaccines go I'm really asking 1) if it's wise or really necessary to give so many injections to children so early in life and 2) if the deathrate from 'flu hasn't decreased noticeably since the advent of the flu vaccine then why the annual hype to persuade everyone to have it.. I'm thinking of the bullying campaign against NHS workers who opted out and were more or less told that they were being selfish and unfair to their patients and colleagues.

By sablonneuse (not verified) on 16 Feb 2013 #permalink

How do people take this seriously?

It is perhaps possible that appearing to be a raving lunatic is to the benefit of Jim Humble's scheme to obtain a religious defense for selling MMS. On the other hand, he might just be a raving lunatic. One thing rather unclear to me how hitting a (quartz) "crystal skull" with a UV laser is going to generate the emission of "microwave information."

There’s a lot of observation and reasoning that goes on below our conscious awareness, such that we can reach a conclusion — even a correct conclusion — without being able to say what led to it.

Sadly, in mainstream medicine this led to the concept of "clinical judgement" where doctors and surgeons keep applying an inferior treatment, blithely insisting that their years of experience and finely honed clinical judgement inform them that the treatment helps more patients than it harms... just like everyone else, they remember the successes and downplay their failures.

Hence the rise of Evidence-Based Medicine. Doctors are no more objective about their success rates than anyone else, and need statistical support.
----------------------------------------------
Sablonneuse : Homeopaths then have to choose from a large number of possible remedies with only subtle differences as well as deciding on the potency and frequency of the dose.

This is one of the warning signs, for me. New products are continually added to the Materia Medica. You would think that products would sometimes be removed because a new addition is superior, but no.

in homeopathy [...] there are literally hundreds of different criteria to take into account when prescribing a remedy. They also have to rely on the patients own perception and ability to explain their symptoms, combining this with what they themselves observe. [...] One of the big problems facing us all is that there must be loads of homeopaths out there with the minimum of training and qualifications who are giving homeopathy a bad name.

Well, yes. And if the homeopath establishment has no way of distinguishing competent homeopaths from incompetent ones, and no way of disqualifying a homeopath who is supplying an inadequate standard of care, then what hope is there for the rest of us?

It seems safer to assume that all homeopaths are self-deluding or fraudulent, rather than rely on the chance of encountering one of the hypothetical competent ones.

By herr doktor bimler (not verified) on 16 Feb 2013 #permalink

if the deathrate from ‘flu hasn’t decreased noticeably since the advent of the flu vaccine then why the annual hype to persuade everyone to have it..

What year was influenza vaccine introduced? Raw long-term mortality data are always tricky, because of course other changes occur in the meantime. To make this argument, you have to assert that there is no change in morbidity.

^ Blown blockquote, sorry.

Oh, and blown link, too. Perhaps I shall retire to simpler activities for the time being.

Well, yes. And if the homeopath establishment has no way of distinguishing competent homeopaths from incompetent ones, and no way of disqualifying a homeopath who is supplying an inadequate standard of care, then what hope is there for the rest of us?

You forgot "no way of distinguishing one homeopathic remedy from another."

sablonneuse,

You wrote: "A wrong remedy won’t work but it’s not likely to do any harm."

That's not true, actually.

Delaying proper treatment can cause considerable harm. As a simple example, I am aware of a homeopathy remedy targeted at fever in infant and young children.* If by offering this the delay in proper treatment causes the child to become much sicker, then offering that homeopathic remedy caused harm.

A key to offering any treatment is proper diagnosis. It is my understanding that homeopaths do not receive the same medical training as doctors.

Furthermore, these remedies can be bought off-the-shelf by people with no medical background of any kind.

The only illnesses homeopathy could rightfully be offered for are those where the patient would not come to harm were they not treated at all and would recover with no treatment. (There's a catch-22 in this: you need proper training to recognise more serious illnesses.)

You wrote: "1) if it’s wise or really necessary to give so many injections to children so early in life and 2) if the deathrate from ‘flu hasn’t decreased noticeably since the advent of the flu vaccine then why the annual hype to persuade everyone to have it.. I’m thinking of the bullying campaign against NHS workers who opted out and were more or less told that they were being selfish and unfair to their patients and colleagues."

There are several anti-vaccine urban myths mixed into this:

- "too many too soon". Shortest answer is that this is simply an urban myth. (Sorry but this is getting long and I have other things I want to do.)

- focusing solely on death rates, try factoring in illnesses, too. (In practice there is a reduction in death rates. A problem here is that anti-vaccine groups like to ask for impossible success rates as a straw-man argument, then calling the vaccine a "failure" for failing their impossible request.)

- loaded language spinning the story ("bullying"). As medical workers part of their mission should be to not harm others, hence they ought to ensure they do not carry contagious illnesses, particularly as the people in their care are already weak from some other illnesses or injury.

---
* As a grosser example, some of the remedies this iridologist offered to treat a massive tumour on the scalp were homeopathic. (I've other posts offering some of the backstory and follow-up.)

@134 sablonneuse - A wrong remedy won’t work but it’s not likely to do any harm. In fact, if it’s only water then it’s got to be 100% safe! (unless the water is contaminated) I don’t see any problem with giving children a homeopathic remedy to relieve symptoms of minor illnesses

@sablonneuse - LW made an excellent observation @115. Zicam and Hyland's Teething Tablets are considered by some to be homeopathic remedies, yet they have serious risks. You don't see a problem with giving babies belledonna, or worse yet, giving them inconsistent and sometimes toxic doses?

@119 MOB: Any positive results – regardless of how infrequent – are the result of the power of the remedy. Any negative results – regardless of how frequent – are the fault of the skill of the prescribing homeopath.

It seems that "sablonneuse" may be trying to invoke the 'blame the patient' excuse for the cases where homeopathic remedies don't work.

@134 sablonneuse They also have to rely on the patients own perception and ability to explain their symptoms, combining this with what they themselves observe.

@sablonneuse: "if the deathrate from ‘flu hasn’t decreased noticeably since the advent of the flu vaccine then why the annual hype to persuade everyone to have it"

As Grant pointed out, there's a difference between the death rate and the rate of illness. I get the flu shot every year though I'm not required to do so, because the one time I got the flu I developed pneumonia and had to take two months off from work to recover. Sure, it wasn't fatal but all things considered I'd rather get a flu shot every year for the rest of my life rather than go through that again.

@Sablonneuse

Hello Flip: I’m not deliberately ignoring your question but I’m not sure exactly what you mean.

What I mean is, you seem to be ok with the safety levels of homeopathy, but not of vaccines. Why are you worried about the risks of one, but not the other?

What research have you done to ensure homeopathy is safe before using it? And if you haven't done any research before using it, then your comments about vaccine safety are fairly... pointless. You want 100% safety guaranteed for one thing, but don't seem to care about safety for something else.

Case in point:
You give a child 5 homeopathic remedies over several months. It's supposed to combat measles. This is different to giving a vaccine how?

Or, as I tried to say before... nothing is 100% safe. You can get run over by a bus, but I seriously doubt that you never leave your house. You can get sick from milk, but you probably drink it. Why do you expect 100% safety guaranteed for vaccines?

My guess is what you're looking for here is the naturalistic fallacy - homeopathy seems more natural to you, and vaccines are less natural, therefore vaccines are worse than homeopathy. Am I guessing right?

And the "won't do any harm" thing is also silly: not just because of what the others have mentioned, but also because you seem to think that there are no side effects *ever* to homeopathic products. If you believe it works, then what do you think prevents you from an overdose, for example?

A key to offering any treatment is proper diagnosis. It is my understanding that homeopaths do not receive the same medical training as doctors.

Homeopaths do not "diagnose." This is set out quite clearly at the beginning of the Organon. There are no individual diseases, and hence nothing to diagnose. Homeopaths "assess." There is no causality. (At least, until some sort of explanation for the spook show is required.)

@herr doktor bimler:

There’s a lot of observation and reasoning that goes on below our conscious awareness, such that we can reach a conclusion — even a correct conclusion — without being able to say what led to it.

Sadly, in mainstream medicine this led to the concept of “clinical judgement” where doctors and surgeons keep applying an inferior treatment, blithely insisting that their years of experience and finely honed clinical judgement inform them that the treatment helps more patients than it harms… just like everyone else, they remember the successes and downplay their failures.

That's true, of course, and that's why I've been stressing that we're not picking on alt med in general or homeopathy in particular by insisting on proper evidence.  However, a good doctor in the course of coming to a diagnosis may ask questions or check signs that aren't in the "standard checklist", due to some "intuition" that forms based on hints that may not even be consciously perceived. That's not the same thing as deciding whether a treatment is effective or not based on personal experience.

"...“if the deathrate from ‘flu hasn’t decreased noticeably since the advent of the flu vaccine then why the annual hype to persuade everyone to have it".

Sadly, the CDC Flu Surveillance Network has reported 5 additional pediatric deaths from influenza, for a total of 64 pediatric deaths for the 2012-2013 seasonal flu. (Adult deaths from influenza are not "reportable" communicable diseases)

http://www.cdc.gov/flu/weekly/index.htm#MS2

Narad:

This is set out quite clearly at the beginning of the Organon.

Some of the "miasms" outlined in the Organon are syphilis and gonorrhea. What sablonneuse needs to do is see if those bacterial diseases are adequately treated by homeopathy, or by modern medicine today. What is the actual standard of medicine for both of those diseases?

Hello flip and S: when I mean 'safe' I'm thinking of properly prescribed homeopathic remedies by a trusted practitioner -not over the counter packets like the teething remedy for babies which seems to have had a high belladonna content. As you yourselves say, a homeopathic remedy should have only a minute part or none at all of the original remedy so any toxic ingredients should no longer be harmful. Therefore, as far as I can see it's much safer to give a chiild 5 doses of (properly prescribed ) homeopathy than 5 vaccinations in a short period of time.
flip, you have hit the nail on the head when you say I prefer natural things to chemical ones. You're right, that does play a big part in my thinking.

By sablonneuse (not verified) on 16 Feb 2013 #permalink

Giving a child 5 doses of homeopathic remedies might be saver than 5 vaccinations, but the vaccinations actually work and are effective, which can't be said of homeopathic remedies, which are just water.

@Sablonneuse

Hello flip and S: when I mean ‘safe’ I’m thinking of properly prescribed homeopathic remedies by a trusted practitioner -not over the counter packets like the teething remedy for babies which seems to have had a high belladonna content.

You're still not getting it: HOW do they determine whether homeopathic products are safe? And why do you trust that safety more than vaccines?

Try thinking about, and answering, my other questions.

flip, you have hit the nail on the head when you say I prefer natural things to chemical ones.

I thought so. Would it surprise you to learn that there are chemicals in your natural products? Going back to my above point - why do you trust that safety more than vaccines - if you know belladonna is not safe, then you also know that natural things are not 100% safe. If natural things are not 100% safe, then you're trust in homeopathy is nothing more than hope and faith ... because you'd rather just believe that 'nasty chemicals' are more harmful than 'nasty naturals'.

My point is that both have benefits, both have side effects, but you seem to only criticise one and not the other. (Assuming homeopathy works, which it doesn't)

@sablonneuse: "Therefore, as far as I can see it’s much safer to give a chiild 5 doses of (properly prescribed ) homeopathy than 5 vaccinations in a short period of time."

That's true. Actually it doesn't matter whether the homeopathic remedy is properly prescribed or not, as long as it is sufficiently diluted. You could, and perhaps do, swig down eight cups of homeopathic remedies a day without harm.

However, the difference between homeopathic remedies and vaccines is that vaccines have genuine effects (beyond keeping you hydrated, of course).

Small children who get a bump or bruise or scrape will often ask their mommy to "kiss and make it better", and she does and it will feel better. Taking a homeopathic remedy is like getting mommy's kiss: it doesn't do anything physically, but it has a psychological effect. But mommy's kiss -- or a homeopathic remedy -- won't keep the child from getting tetanus if there are tetanus spores in that scratch. A prior tetanus immunization very likely will.

Mommy's loving care, or a homeopathic nostrum, mayl make a child feel better while suffering through measles, but it won't stop the encephalitis that can kill or cause severe brain injury. A measles immunization very likely will prevent the measles altogether.

A good friend of my family is a retired pediatrician. She used to practice in Colorado where anti-vax sentiments are strong, and it was always a struggle for her to persuade parents that vaccination is beneficial. She didn't always succeed. One year there was a measles outbreak and one of her patients whose parents refused to vaccinate, got the measles and suffered severe brain damage. He didn't *die*, but everything that he might have become was utterly destroyed.

Anti-vaxxers will often point to the low death rate from measles (thanks to modern medicine) as proof that the measles vaccine is unnecessary, but they overlook the patients who don't die but are severely and permanently harmed.

So yes, vaccines have a risk associated with them because they are actually doing something to protect you. Properly prepared homeopathic remedies have no risk because they're not doing anything.

You should not restrict your evaluation to risk only; you should also consider benefits.

flip: You say "My point is that both have benefits, both have side effects, but you seem to only criticise one and not the other. (Assuming homeopathy works, which it doesn’t)" (I don't know how you all get those italics!)
YES! we're almost singing from the same song sheet but you'll notice I have agreed with criticism of ridiculous claims for and irresponsible sales of homeopathic remedies. Yes, of course, many homeopathic tinctures are poisonous but that's why you need a trustworthy practitioner to dilute the dose sufficiently. If you take remedies as tinctures (say 10 to 50 drops in a glass of water then there's definitely quite a few molecules left in there so I do appreciate the dangers of overdosing..
Sorry, which of your other questions haven't i replied to?

LW you say " vaccines have a risk associated with them because they are actually doing something to protect you" . It's exactly this problem that worries me. Why does something that is meant to protect you carry a risk of doing you harm? I'm really sorry about the patient who suffered brain damage associated with measles. The problem for parents is to weigh the probability of their child catching measles AND suffering serious after effects against the risks attached to the vaccine itself and i don't think it's easy for anyone to assess this realistically as each case is individual and full of " ifs and maybes "
As for using Arnica for bruising it's impossible to know how bad a bruise may have been if you hadn't used it so, of course, I can't prove that it works any way other than like 'mummy's kiss'. I don't think either of us will be persuaded to change our minds on that one but you'll be pleased to hear that all our family's tetanus jabs are up to date so I'm not completely anti-vax!

By sablonneuse (not verified) on 17 Feb 2013 #permalink

@sablonneuse - What I'm about to relate is anecdote, not science, but it demonstrates a point.

Some time back there was someone who posted on this blog that he believed that his frequent bouts of gout were cured by one of several homeopathic remedies. When he would get a flare-up of his symptoms, he would try one of the remedies. If this didn't work (and if I recall correctly, the first choice never did) he'd move through a series of these until his symptoms subsided. This he credited to finding the correct treatment; for some reason (possibly one of the hundreds of considerations) the same remedy never worked twice in a row two bouts of gout in the same person were sufficiently different, in his mind, to justify the failure of one remedy to cure both.

It was pointed out that what he described is a pretty typical cycle for untreated gout - that based on the data presented, you could tell no difference between his experience with homeopathic medicines and simply not treating at all. It was further pointed out that untreated gout has a very good possibility of doing serious damage to one's joints, but there were medicines shown to be effective in clinical studies.

There are several ways to interpret this person's experience. Since what he observed is what one would reasonably expect to happen if gout were left untreated, the simplest explanation was that this was exactly what happened. None of the remedies he tried had any particular effect; the interpretation that it did came from the normal way gout symptoms progress.

This is the simplest explanation; while I believe it highly likely to be true, it could be overturned by better data. The level of data this person was able to point to did not

Why did this person believe that homeopathy worked when it seems so much more likely that it did nothing? Because he saw the symptoms reduce if he kept trying long enough.

By Mephistopheles… (not verified) on 17 Feb 2013 #permalink

The problem for parents is to weigh the probability of their child catching measles AND suffering serious after effects against the risks attached to the vaccine itself and i don’t think it’s easy for anyone to assess this realistically as each case is individual and full of ” ifs and maybes ”

Actually, this is a fairly simple calculation (at least in the first order). For, say, measles there is currently no chance of eliminating the disease as was done with smallpox and which may be done with polio. This means that, given the porous nature of borders and the speed at which people who are contagious but as yet asymptomatic can enter an area, the only way minimize the risk of getting the disease is to ensure that around 90% of the population is vaccinated. Much lower, and the risk of epidemic (given a first case) is greatly increased.

Parents have two ways to do this. One is to immunize their children, which takes a small risk in order to avoid a much larger one. The other is to leave their children unvaccinated while ensuring the people they come into contact with are immune to the disease.

There are some who would argue that, in the absence of special circumstances, the second choice is an act of anti-social behavior, taking advantage of everyone else's risk taking for your own benefit while potentially endangering others (such as those who cannot for some reason be immunized or for whom the immunization is not successful).

By Mephistopheles… (not verified) on 17 Feb 2013 #permalink

@sablonneuse: "It’s exactly this problem that worries me. Why does something that is meant to protect you carry a risk of doing you harm?"

I am of course a layman but I can explain my understanding in laymen's terms.  The point of a vaccine is to tell your immune system, "Here is something that you should watch for and attack if you ever see it again." Unfortunately, stirring up the immune system can be hazardous -- it's thought that deaths from the 1917 flu were often caused by the immune system itself.

Vaccines are, of course, designed to stir up the immune system just enough to teach it, but not enough for it to do any harm. Since everyone is different, sadly, sometimes the vaccine does harm.   Again in laymen's terms, you might think of staging a drill with a platoon of soldiers -- raw recruits, in fact. We hope that they all figure out where to go and which end of the rifle to point where, but every so often -- fortunately very rarely -- one will manage to shoot himself or a neighbor.

We could of course avoid such accidents by never drilling the soldiers. If we did, however, when an attack did come, there would be a frantic scramble -- with potentially even more accidents -- by the inexperienced troops. And they might fail to fend off the attack anyway.

No one can say for sure if a given patient will get the measles or other disease or suffer harm from it without being vaccinated. We can only play the odds -- and the odds of suffering harm from the vaccine are far less than the odds of suffering harm from the disease. 

Welcome to this merry band, sablonneuse. If you stick around, I think you will find this is a group of individuals, spread around the globe, who are generally kind and patient.

I suspect it is understandable that you have a postive-ish view of homeopathy, as homeopathy is (in my experience) used by MDs in France. That doesn't mean that homeopathy is effective (or safe, for that matter).

As to tone (specifically, commenters' exasperation): You may want to read up on "Pablo's Law of Internet Commenting"

http://lizditz.typepad.com/i_speak_of_dreams/2011/12/pablos-first-law-o…

With regard to Arnica - at what concentration does it work? When I look up arnica cream, the commercial products I find range from about 1% - 7% arnica in a base containing various presumed inactive ingredients. Assuming this is what's being discussed, this is merely an herbal medicine without anything distinctly homeopathic about it.

By Mephistopheles… (not verified) on 17 Feb 2013 #permalink

At #153, Sablonneuse wrote:

The problem for parents is to weigh the probability of their child catching measles AND suffering serious after effects against the risks attached to the vaccine itself and i don’t think it’s easy for anyone to assess this realistically as each case is individual and full of ” ifs and maybes ”

Sablonneuse, forgive me, but this is fuzzy thinking on your part. The relative risks of the measles disease versus the measles vaccination are quite well known and easily available to parents.

1. the risk of measles in an unvaccinated child, exposed to measles, is about 90%. That is to say, if you expose 100 unvaccinated people to the measles virus, about 90% will come down with measles. And it doesn't require person-to-person contact -- the virus can exist, and be infective, for about 2 hours outside the body.
2. Having measles without complications means suffering. Yes, suffering: high fever, intense, unremitting itching, the chance of lesions in the throat or genitals with the associated pain while eating or relieving oneself, and malaise, for days.
3. There are significant risks of other poor health outcomes. Approximately 30% of cases of measles have an associated complication. These complications can include diarrhea (8%), ear infections (7%), pneumonia (6%), blindness (1%), acute brain inflammation (encephalitis) (0.1%), and persistent brain inflammation (subacute sclerosing panencephalitis) (0.0001%).
4. The risks from the vaccine, on the other hand, is both small and transient. Adverse reactions to measles vaccination (as part of the MMR) include fever (5%-15%), rash (5%), joint aches (5%), and low platelet count (thrombocytopenia; one instance per 30,000 doses). The risk of long-term, serious adverse reaction to the measles vaccine has been estimated to be 1 out of a million doses administered.

Sources were many, but this is a good, thorough article:

http://www.medicinenet.com/measles_rubeola/article.htm

a homeopathic remedy should have only a minute part or none at all of the original remedy so any toxic ingredients should no longer be harmful.

If homeopathic dilutions are effective, why is it necessary and what is the advantage to using "bio-infused" or energetically-infused homeopathic remedies? Explain to the scientists here why using a scalar generator, for example, to infuse energy into a homeopathic solution would result in an effective treatment when the base remedy, without the added energy, fails to render an effective cure or even minimal symptom relief.

http://www.creamforacause.com/bio-infused

http://www.nutramedix.ec/ns/lyme-protocol

@ sablonneuse:

Above I wrote about why alt med formulae may appear to work - especially for cyclic conditions-

Here's how we can test whether a treatment ( alt med or SBM) REALLY has an effect or whether the effect is due to CHANCE. Occasionally alt med apologists may provide a study that "proves" that a treatment works HOWEVER often it has a small number of subjects, is not blinded etc. Obviously there are many interfering issues we have to deal with. Like small sample size.

A homeopathist produces a study that shows that a certain product alleviates symptoms: but he has only 14 subjects total. We shouldn't count on it:
it's possible that his experimental group ( who received the treatment) were BY CHANCE ALONE all about to go into a milder phase of their illness and/ or all of the control group ( no treatment) BY CHANCE ALONE were getting worse or staying the same.

One way to deal with this problem is to have large numbers of subjects : we assume that in very large groups the subjects' conditions will be more normally distributed, wherein only a few have severely bad symptoms and only a few have extremely mild or absent symptoms ( imagine a bell curve- picture the two ends), most are in mid-range. So both groups are more likely to NOT sample only extremes.

The results are compared through a statistical test that determines if the results are what we would expect by chance or not. The differences BETWEEN the groups should exceed the differences WITHIN the groups, if the effect is REAL.( I could illustrate this much better if I had a blackboard and could show SDT) We can also account for the errors that we can make.

I went into detail to show how experimental design has to consider many issues and control for them- that was only about sample size.

If an experimenter knows which subjects are getting the treatment- not the placebo- it might influence him; similarly, if the subjects know if it's real or placebo, it influences their reporting. The action of taking anything may bias reporting. There are many more problems that I shall spare you.

When a person makes a comparion based upon the effects of a treatment on a single person- self or other- any number of chance occurences or biases may occur: large numbers and blinding both subjects and experiementers is a way to elimnate many of the flaws inherent in studying human recations to medication or other treatment.

By Denice Walter (not verified) on 17 Feb 2013 #permalink

Mephistopheles: I like the gout story and yes, I can see why you are telling me this with regard to Arnica. The gel I buy here is 7% arnica with various other oils etc. It warns that it's not to be used on babies under a year old, on open cuts, eyes or mucous membranes. I bruise very easily so also take the granules if it's a 'big bump'. Of course I have absolutely no way of proving that it works without trying to get two identical bumps and using Arnica for one of them!

Liz Ditz: thank you for Pablo's Law. Very appropriate! You're right that homeopathy is widely available in France and some GPs even write prescriptions for it. The majority of chemists stock a wide variety of remedies and can get anything at all within 24 hours.
I take your point about measles. I can remember having it round about my 4th birthday. My mother said it was responsible for my extreme shortsightedness.

By sablonneuse (not verified) on 17 Feb 2013 #permalink

@Sablonneuse

Yes, of course, many homeopathic tinctures are poisonous but that’s why you need a trustworthy practitioner to dilute the dose sufficiently. If you take remedies as tinctures (say 10 to 50 drops in a glass of water then there’s definitely quite a few molecules left in there so I do appreciate the dangers of overdosing..

Ok, so we're kind of getting closer... How do homeopaths know which ones are poisonous, and which ones aren't?

Sorry, which of your other questions haven’t i replied to?

HOW do they determine whether homeopathic products are safe?
And why do you trust that safety more than vaccines?
What research have you done to ensure homeopathy is safe before using it?
Why do you expect 100% safety guaranteed for vaccines when nothing in life is 100% safe?

It should be obvious by now what I'm getting at, since I've pretty well laid it out for you, but I'm going to have to spell it out I guess:

Homeopathic treatments. (Assume it works for the moment) Benefits: treats your illnesses. Side effects: can be poisonous.
Vaccines. Benefits: prevents illnesses. Side effects: very rare reactions.

Homeopathic treatments: you trust without question, despite not being 100% safe.
Vaccines: you distrust, despite not being 100% safe.

Why do you trust one, and not the other?
Again, I think it comes back to your false assumption that 'natural' is better. Even though you admit that 'natural' can be poisonous.

And lastly

It’s exactly this problem that worries me. Why does something that is meant to protect you carry a risk of doing you harm?

Because everything does you harm. It's why I talked about crossing the road and drinking milk. You can drown in your own bathtub, but I bet you use it. You can get sick from drinking water, but you are not likely to avoid going near it. You can choke on your food, but you're not going to survive without it.

Why do you eat, because eating is meant to protect you, when it carries a risk of harm?

Scalar wave ‘technology’ is discussed on Quwave.

Thank you, S, for that link to total wibble. I need more coffee now. Much more coffee.

By herr doktor bimler (not verified) on 17 Feb 2013 #permalink

@flip - Maybe Sablonneuse would feel better about vaccines if they were infused with scalar wave bio-energy. She didn't answer my question either. Why do the leaders in the homeopathy field need to 'bio-infuse' their products?

HDB - My pleasure.

What is it about new-age quackery and bad website design? Do they think that shouty colour choices seem more authentic? That Quwave / 'scalar wave' site had bright blue backgrounds; red bold lettering on gray backgrounds; the works.

By herr doktor bimler (not verified) on 17 Feb 2013 #permalink

@ Sablonneuse

You wrote: “I have agreed with criticism of ridiculous claims for and irresponsible sales of homeopathic remedies.”

I think you’re missing (or side-stepping) a point made. Don't be put of by me making the point firmly (it's clearer if I do): all promotion of homeopathic remedies makes “ridiculous claims for and irresponsible sales” because the remedies themselves are ridiculous - once anything is diluted to the extent that it's homeopathic, the mixture is either too dilute to have any effect or is so dilute that the original substance is no longer present in the remedy. Bearing that in mind, you can't point at some homeopathic remedies as ridiculous and others not.

You wrote: “Yes, of course, many homeopathic tinctures are poisonous but that’s why you need a trustworthy practitioner to dilute the dose sufficiently. If you take remedies as tinctures (say 10 to 50 drops in a glass of water then there’s definitely quite a few molecules left in there so I do appreciate the dangers of overdosing.”

To my reading you seem to be confusing homeopathic remedies, with their high dilutions, and herbal (etc.) remedies. Once a remedy is diluted to the extent that the original substance is diluted out (as in homeopathic remedies) it won't matter if you add 10 drops, 50 drops or a thousand - the original substance has already been diluted out and adding more drops won't make the original substance reappear.

You seem to be saying that in non-homeopathic form, non-diluted form, that the mixtures might have some effect. (And why not. I thought we were talking about homeopathic remedies.)

You wrote: “It’s exactly this problem that worries me. Why does something that is meant to protect you carry a risk of doing you harm? I’m really sorry about the patient who suffered brain damage associated with measles. The problem for parents is to weigh the probability of their child catching measles AND suffering serious after effects against the risks attached to the vaccine itself and i don’t think it’s easy for anyone to assess this realistically as each case is individual and full of ” ifs and maybes ””

Others have pointed out some issues in this reasoning, but let me and a few pointers nonetheless. Doing anything has some risk. You do everything in life on balance of risk. What you're asking for there is an example of the "impossible demand" I mentioned in my previous post - that there be no side-effects whatsoever. In reality, what side effects there are temporary (see Liz Ditz' comment), bar some exceptionally rare events.

(It's worth adding that the rare events are associations with vaccination and that these may later prove to be unrelated to vaccines. A favourite example is that many of the cases of seizures in infants previously argued by some to be vaccine-related have proven to be Dravet's Syndrome, a rare genetic disorder. I have a suspicion that many, if not the majority, of these very rare more serious associations with vaccines are in fact rare genetic conditions being shown up by the attention people are paying to children after vaccination. [Hence the suggestion I made in the post in my location.])

@166 HDB - Thank you, S, for that link to total wibble. I need more coffee now. Much more coffee.

@HDB - The links reference NutraMedix's Cowden protocol by Dr. William Lee Cowden. The protocol uses "extract" formulas that have been bio-infused using scalar waves. ILADS physicians use the Cowden protocol to treat what they diagnose as an infection of Lyme disease. Of course they use special labs and special tests, whose results can not be reproduced anywhere else. If I understand correctly, they claim that Cowden's Banderol is 98.6% as effective as Feldene and is safe in lab rats even at 88,000 times the equivalent human dose. http://www.nutramedix.ec/ns/banderol

They claim that the ingredient in their Enula tincture will kill parasites within 16 hours, even if it is diluted to a 1:1000 ratio. The extract ingredient is also 100% effective at killing MRSA. You would think that Big Pharma would snatch up these great products? They are very expensive to purchase, maybe that's why Big Pharma is passing on them. A full 30-day kit might cost you about $500.

http://www.nutramedix.ec/ns/lyme-protocol

*These products have been energetically imprinted* with a proprietary process using a scalar generator for the purpose of enhancing the effectiveness of the natural chemicals in each product. All of the Microbial Defense products have been imprinted with specific energies to aid the body in dealing with specific microbes.

Thank you, S, for that link to total wibble. I need more coffee now. Much more coffee.

This is Bearden's quaternion nonsense, right?

I found this on Rational Wiki. It seems to be the same thing that you mention.
I love the References there.

By herr doktor bimler (not verified) on 17 Feb 2013 #permalink

(Is there anything you don’t know?)

Yah, a whole honkin' lot, much of it, sadly, of an importantly practical nature. In this this case, I recalled this entry from Mark Chu-Carroll, who's over at Scientopia these days. The short version of what he's trying to do with the quaternions is in the comments:

It really makes no sense at all if you think about it in simple terms. What he’s claiming is that if I first stand next to a fire hydrant and observe that it isn’t moving; and then I get in my car and drive past it, and observe that it looks like it’s moving relative to me, that I can extract energy from the fire hydrant’s transition from non-moving to moving.

My physics degree is rather dusty, but it's enough to immediately recognize precisely what is going on with this sort of blabbering. (Cheniere.org is his site; he seems to have additional interests.)

Ah, there are two links in that mess. The second is around "this sort of blabbering."

Thank you for the link to Mark Chu-Carroll.

This is an absolute masterwork of crackpottery.

He summed it up well, no pun intended. So there is an international medical organization that is selling the "absolute masterwork of crackpottery" to treat patients who have an infectious disease. There's jus' someth'g not quite right about that.

flip: I think we're experiencing a certain amount of misunderstanding over the perception of 'safe' here and I admit I didn't help by including "100%' did I?.
I haven't personally researched all the homeopathic remedies to find out which ones are poisonous but i do trust my homeopath to know which are which. For example rhus tox is poison ivy; viscum album is mistletoe etc. BUT, as we both agree, in a homeopathic dilution there isn't enough (or any) of the original substance so it has got to be safe. (We'll leave out the word 'effective' for the time being).
In the case of tinctures I suppose it's more phytotherapy than homeopathy and therefore there is a danger of not diluting a poisonous substance enough. That's what I meant about having to trust your homeopath to prescribe the correct dose.

S. I can't possibly answer your question as I've never heard of 'bio infusion or scalar waves.and having looked them up can't see any connection with homeopathy.

Maybe it's a case of Pablo's Law (thanks, Liz Ditz) and I'm getting out of my depth.

By sablonneuse (not verified) on 17 Feb 2013 #permalink

@ sablonneuse

"BUT, as we both agree, in a homeopathic dilution there isn’t enough (or any) of the original substance so it has got to be safe. "

BUT, as I pointed out earlier, delaying effective treatment can cause harm - you'd be allowing the illness to progress.

This, in turn, brings it back to diagnosis, as well as the (lack of) effectiveness of homeopathic remedies. A point here is that you really have to consider these two elements too, they can't really be put aside.

(Sorry for repeating, but seeing you say this again leaves me wondering if you "got" the point I was making earlier.)

Grant: I do get your point and have already said that a good homeopath should recognise when it's necessary to see a medical doctor. Unfortunately, as you say, there are many cases when 'proper' treatment is delayed. I don't dispute that at all.
I was answering flip's question on a personal basis (maybe I was wrong to take it this way) and trying to explain why I take homeopathic remedies myself and don't consider it risky. I might also add that I go and see my GP just as readily but she doesn't always find a solution.
It's a bit off the point but I recently went to my GP with a problem which I felt might have been caused by a hernia. (I was operated on for an umbilical hernia several years ago and it felt similar). She ordered a scan but no such problems were found. She then asked all the questions for IBS but although I answered NO she gave me medication for it. I can't swallow capsules so didn't take them (didn't take anything homeopathic either) but the problem has cleared up so I suspect a pulled muscle or something like that.

By sablonneuse (not verified) on 18 Feb 2013 #permalink

BUT, as we both agree, in a homeopathic dilution there isn’t enough (or any) of the original substance so it has got to be safeuseless. (We’ll leave out the word ‘effective’ for the time being).

You can't avoid efficacy, it is the whole point of having to swallow a capsule.

Your GP knows you can't swallow caps and still prescribes them?

By al kimeea (not verified) on 18 Feb 2013 #permalink

@sablonneuse: it occurs to me that we may all be talking at cross-purposes to some extent. I've read that sometimes people describe a treatment as "homeopathy" when in fact it's herbal medicine. Herbal medicine is not diluted to nonexistence, so it does have real effects. Of course that means that it can also do harm -- if nothing else, one could be allergic to one of the components. But any discussion of true homeopathy is irrelevant to herbal medicine -- that's an entirely different topic.

Did Bearden write for StarGate? Zero-point energy. 8{P

I work with a guy convinced he's gonna make a perpetual motion machine with magnets. I mention there are two other successful designs, but they are no more than Rube Goldbergian curiosities as they produce zero energy.

Which is why he's using magnets.

Then there's the other colleague who went to a Tesla machine healer whose wallet was cured of cash.

By al kimeea (not verified) on 18 Feb 2013 #permalink

Another colleague thought homeoquackery was herbal medicine. His jaw dropped as I explained what it really is and he'd rather not see any health plans cover it.

Another has his dog tortured by a quackupuncturist for arthritis...

By al kimeea (not verified) on 18 Feb 2013 #permalink

@182 - How are they trapping the bio-energy from beyond the stars and bringing it back to earth? Shouldn't they let NASA know about this 'technology'? I wonder if they have to file a flight plan or pay customs fees for trans galaxy shipping and inspections.

al kimeea: I see what you mean but I was answering flip's question about safety. I already know he says it's useless.
.I asked my GP what the tablets were like and if i could crush them or empty them if they were capsules. She didn't seem to know. The capsules contained a white sticky substance. Yuk!!
LW: Yes,we have been talking about both homeopathy and phytotherapy and I do know the difference. My homeopath uses both dilutions and tinctures so I tend to think of them all (wrongly) as 'homeopathic'. Sorry for the confusion.
She also uses Bach Flower Remedies and Tissue Salts but I don't want to get you all started again!!

By sablonneuse (not verified) on 18 Feb 2013 #permalink

@LW: My wife swears by a certain "homeopathic" arnica preparation. Now I'm quite prepared to believe that the stuff is efficaceous, but as I keep pointing out, it isn't homeopathy as we understand the term. In other words, it actually contains some arnica. I've no objection to her recommending the stuff, but I'm trying to get her to stop referring to it as homeopathic because it muddies the waters (no pun intended).

Of course, this confusion only helps the homeopaths and quacks (yes, I know that's redundant). They can say "this so-called homeopathic remedy is efficaceous. Therefore all homeopathic remedies are efficaceous. Science cannot explain how real homeopathy works. Therefore science knows nothing about homeopathy. Therefore my favourite rectally-sourced explanation for it must be treated as gospel." It's troll logic, of course, but it can be quite effective if dressed up in enough quantum.

oh, Bach. Their "rescue remedy pastilles" are all right as sweets, if a bit bland, but I don't recall that they ever did anything for my stress that, say, a bag of jelly babies wouldn't. I also tried some hop concoction of theirs that's supposed to help you sleep. Once. In future I'll stick to beer. It's cheaper, it actually makes you feel better and it doesn't taste foul. (Well, sometimes it does, but I generally stick to the good stuff unless I've got no other choice.)

There are two questions that anyone who believes in homeopathy should really strongly consider.

1. Are the fundamental principles of homeopathy well demonstrated as true or at least reasonable? The answer is no. As others have pointed out, there are substantial areas of chemistry, physics, and biology that are not consistent with these principles.

2. Regardless of the answer to question 1, are the specific remedies prepared in the manner they are currently prepared shown to be effective? Once again, the answer would have to be no for the vast majority of homeopathic remedies.

By Mephistopheles… (not verified) on 18 Feb 2013 #permalink

Why does something that is meant to protect you carry a risk of doing you harm?

Because that something meant to protect/heal you is actually doing something--it's biologically active.

Aspirin, for example: it attaches an acetyl group to a serine residue in the active site of the enzyme cyclo-oxygenase (COX), irreversibly inactivating it. Since COX is involved in the production of pro-inflamatory prostaglandins inhibiting COX reduces inflamation.

COX is also involved in producing thromboxanes which promote clotting, however, so a common side effect in patients taking high doses of aspirin is is increased vulnerability to bruising (my mother had severe arthritis back when there weren't a lot of options other than aspirin to deal with pain and inflamation, and her arms and legs were always bruised).

Sablonneuse:

It's a question weighing benefits and risks which can often be couched in numerical terms:
very generally**, X vaccine carries of risk of complications of 1 per million but the illness itself carries a risk of serious complications of 1 in a thousand.

Thus 1 per thousand or 1 per million: easily vaccines win.

People who fear vaccines usually believe pseudo-scientific research that vaccines cause autism at a rate of approximately 1 per hundred - so they are comparing the 1 per thousand to 1 per hundred plus 1 per million. Vaccines lose. Their figures are not based on reality but they use them nevertheless.

**Of course there are other risks and benefits ( losing school or work days, suffering etc) that we can put into the equation, and not every vaccine "takes", protection of people who can't be vaccinated etc.

By Denice Walter (not verified) on 18 Feb 2013 #permalink

@Denise - seatbelts are also not "100%" safe - it is likely that, in an accident, a person could sustain an injury from the act of the seat belt saving their life - but no one would use that small chance as a justification for not wearing a seatbelt, would they?

@Lawrence: "no one would use that small chance as a justification for not wearing a seatbelt, would they?"

I actually knew someone who did.

@ Lawrence:

Yes but that would take us to the haunted realm of subjective probability, Brian. And we don't want to go there just yet , do we?
One of my profs, now deceased - very long ago- did research that showed that people did not stick to classical logic, too. I imagine that that might be rather hard to believe.

By Denice Walter (not verified) on 18 Feb 2013 #permalink

I have a hypothesis. I believe that for some people risks caused by inaction are far more acceptable than risks caused by action - even if the numbers say that's wrong.

By Mephistopheles… (not verified) on 18 Feb 2013 #permalink

@Mephistopheles O'Brien: that's quite common, really.  If you take an action and the risk becomes real, well, you decided to take that risk, didn't you?  So it's your fault. Whereas if you didn't take that action -- generally speaking you didn't decide to take that risk of inaction because, after all, there are a million other things that you also didn't decide to do.  You can't reasonably be accused of deciding to take all those risks.

But vaccinating your child is different. You can't just not vaccinate as you can just not turn on the TV this afternoon.  Society pushes you to make a conscious decision as to whether to vaccinate or not. If you don't vaccinate against a disease, and your child then gets that disease and dies or suffers terrible complications, then it is very likely that that specific harm resulted from that specific decision to take that specific risk by inaction.  And, of course, if you do decide to vaccinate, you are consciously deciding to take that specific risk instead. 

Perhaps that's why anti-vaxxers are so, um, vigorous.  They don't want to have to make that conscious decision and accept those risks either way.

sablonneuse said:
"Grant: I do get your point and have already said that a good homeopath should recognise when it’s necessary to see a medical doctor. Unfortunately, as you say, there are many cases when ‘proper’ treatment is delayed. I don’t dispute that at all."

Sablonneuse, you seem like a really nice person, and I hope you will interpret our tone here with friendly intent. I see you engaging in a logical fallacy called the "No True Scotsman" here in your statement, only it's more like "No True Homeopath" would fail to recognize when a client needs medical care. However, there are documented (caught on video) cases of British homeopaths recommending homeopathic treatment for infectious diseases like malaria. Wouldn't you agree that these practitioners should at the very least be sanctioned, and with that in mind, how does one judge whether a homeopath is good or ethical enough to recommend medical intervention?

You seem really nice, and I like to see nice people examine their own pre-conceptions so they don't get taken advantage of. It's a road I've been down myself.

By Melissa G (not verified) on 18 Feb 2013 #permalink

@ Mephistopheles O'Brien:

Your hypothesis might hold water- let's just say that it possibly fits with research in attributional theory - which I won't go into because it might take years- that people feel differently about things when the action originates with themselves rather than from others or the environment.

Attributional research leads to ideas about executive functioning, metacognition and CBT amongst a thousand other concepts. Endless.
I'll use my ex fx and resist.

You might actually be the devil's rep on earth.

@ Melissa G:
As we say, "What's the harm?" Right.
Plenty!
A person might advocate for natural health by listing the benefits of 'natural solutions' and the side effects of meds.

This argument may lead to a fallacious conclusion that meds for diabetes can be replaced with diet et al ( e.g. last night's talkback @ prn.fm by a non-doctor) by the audience.

You may need medical training in order to differentiate whether a condition is serious or not.

By Denice Walter (not verified) on 18 Feb 2013 #permalink

I did an exercise for the Quackometer blog a while back. Google cancer + homeopathy, or AIDS + homeopathy, and you will get DOZENS of hits from homeopaths' own websites in the USA (and India, especially) offering homeopathic treatment for those life-threatening diseases. In the UK it has to be a little more "nudge nudge wink wink" as the Cancer Act prohibits such advertising, but off the record, as Melissa G. states, many homeopaths are convinced their sugar balls can cure such diseases.

Homeopaths in fact discourage patients from seeing real doctors, they are anti-vaccination by and large, anti-flouride and anti-real medicine. A true homeopath believes his sugar balls can prevent or cure anything.

Once again, look up Penelope Dingle.

By Marc Stephens … (not verified) on 18 Feb 2013 #permalink

Hello Melissa G and thank you for your kind words.
The problem is that I am looking at it from two perspectives: my personal trust in 'my' homeopath and stories of less scrupulous/badly trained/barely qualified people who give homeopathy a bad name.' Of course I agree that they should be sanctioned but I'm afraid i can't answer how one judges a reputable homeopath. Perhaps eventually there will be a register with rigorous entry requirements?
I know that my homeopath wants to work with her patients' doctors and she is capable of recognising when medical treatment is called for as she has had some medical training. (You won't be surprised to hear that not many doctors are interested in working alongside her though!)

It would be difficult to shake my acceptance of homeopathy but I have to say I have learned a lot more regarding the risks and safety of vaccination and I'd like to thank all those who have taken the time and trouble to explain in simple terms. I have been reading too many arguments from 'the other side' so it makes a refreshing change to come to this blog.

By sablonneuse (not verified) on 18 Feb 2013 #permalink

"Scrupulous" and "Homeopath" are mutually exclusive.

Darwy - I'm not entirely sure that's fair. I'm sure many homeopaths believe that they're doing great good because of what they've been taught.

By Mephistopheles… (not verified) on 18 Feb 2013 #permalink

I’m sure many homeopaths believe that they’re doing great good because of what they’ve been taught.

There was even one homeopath back when I frequented MDC who rejected assertions that there was "something in it." Straight magic vibrations. I'll credit her with honesty.

Hi Sablonneuse! I'm really glad to hear you're learning more about vaccine efficacy and safety here. No one minds explaining things to someone who's genuinely asking. In fact, we kind of love it! :)

By Melissa G (not verified) on 18 Feb 2013 #permalink

#199 Awesome!

We all know and accept that there are some risks associated with vaccines (as with any medical procedure, such as x-rays, anaesthesia, and even filling cavities at the dentist's office), but the common ones are usually soreness or redness around the injection site, and the uncommon ones are far, far less likely to occur than the nasty side-effects that go along with even so-called "harmless" diseases.

Chicken pox can blind you, mumps can leave you infertile and measles can turn into measles encephalitis and leave you brain-damaged. And (crowd, correct me if I'm wrong, here!) each of those side-effects is more likely if you get the disease than having an equally bad or worse reaction to the vaccines.

Incidentally, my father cannot have the tetanus-diphtheria-pertussis vaccine (he has the misfortune to be allergic, and he did indeed have a nasty reaction to the shot, I believe).

If the people he comes into contact with do not vaccinate, pertussis at least is a real risk. My father does not have a choice; you do. Please vaccinate!

I did too. And my darn arm ached afterward, let me tell you. But it is worth it.

@Sablonneuse

I haven’t personally researched all the homeopathic remedies to find out which ones are poisonous but i do trust my homeopath to know which are which

Now follow to the next thought:
How do the homeopaths know what's poisonous and what's not?

BUT, as we both agree, in a homeopathic dilution there isn’t enough (or any) of the original substance so it has got to be safe

If there is no original substance left, then how does it work?
As an easy to understand not-quite-accurate analogy:
I have a car. I dilute gas with water, so much that there's no trace of the gas left, only water. I put the water in the car. Does the car still work? And more to the point - does exchanging one substance for another mean that the car is safe to drive?

Please also go back and answer the other questions. They are relevant, and if you don't know the answer, that's fine, but please at least try.

It would be difficult to shake my acceptance of homeopathy but I have to say I have learned a lot more regarding the risks and safety of vaccination and I’d like to thank all those who have taken the time and trouble to explain in simple terms. I have been reading too many arguments from ‘the other side’ so it makes a refreshing change to come to this blog.

Well, if anything I'm happy that you've considered our positions - it's great to see for once someone genuinely interested in understanding and learning, rather than just trolling for laughs or getting too frustrated to stick around and read our replies.

Melissa and flip (and everyone else who's helped me) thanks again.
flip: you're right again, i can't answer all your questions but I would like to hope that by now they have figured out which substances are toxic and which are not.
I have no choice but to acknowledge the scientific argument that as there is no trace of the original substance in a diluted homeopathic remedy it can't possibly work but where I differ from all of you is that I do have room for a little 'belief' that doesn't have to be based on hard fact. I'm not 'religious' but I have an open mind when it comes to certain things that can't be explained by the laws of science as we know them. Do you not think there's a possibility that there is still more out there that scientists haven't yet discovered?
Of course, i accept all that you say about the misuse of homeopathy and the risks attached to it.
But despite the scientific facts I will still use homepathy because it works for me and maybe -just maybe -one day someone will be able to explain why. . . . . . .

flip: as for your other questions about why do I accept homeopathy and reject vaccines etc. Well I admit I came to this site very anti the present day vaccination programme but not totally anti vaccine. I expressed my concerns about giving more and more vaccines to babies at a young age and taking Denice's argument that if X-vaccine carries a 1;1000000 risk of adverse effects then giving X and Y doubles the risk and perhaps it more than doubles because they are given together. So, the more jabs a child gets (within a short tine -say several month) the more the risk accumulates.
Not being a scientist or a mathematician I can't really take this argument any further but I'll be interested to hear what you have to say.
Then with the 'flu jab I freely admit I was very biased and influenced by what I had read elsewhere. I can now say you've changed my thinking!

By sablonneuse (not verified) on 18 Feb 2013 #permalink

@Sable - actually, Science can explain that right now, you don't have to wait:

1) It is the placebo effect - you feel better because you've made yourself believe that the "treatment" is helpful.

2) You are treating a condition that is of short duration or variability in symptoms, meaning that you take the "remedy" and the symptoms disappear, but that they would have gone away on their own, if you hadn't done anything at all (which is really what you are doing, taking "water" for whatever ails you).

See, this whole "belief and faith" thing was great a few hundred years ago, when we didn't have anything else to go on - but now we actually have the tools and methods for determining what ails people and developing (and testing) effective treatments. Of course, we are still learning, but we've gotten past the point of hocus pocus & beliefs in the "invisible."

Of course, no harm, no foul - you can continue to do what you think is right, but I hope that by coming here, you've shown at least a shadow of doubt that this "treatment(s)" aren't what they are claimed to be & potentially harmful in some situations as well (and finally, no better than placebo).

@sablonneuse

"Do you not think there’s a possibility that there is still more out there that scientists haven’t yet discovered?"

Certainly (there's a reason science hasn't ended!), but in the case of homeopathy—with it's very high-dilutions—it's very clear these "remedies" aren't able to do anything.

"because it works for me"

Excuse me for nitpicking this, but individual experience doesn't really establish if something works or not. It's something marketing for "woo" plays on and people fall for. The key problem with individual experience is that you can't rule out all the others things that might have contributed to the "cure" as there's only one of you so there's no realistic way to examine all the things affecting the resolution of the illness. (I'm simplifying, but I hope you get the gist.) In particular, some illnesses occur in cycles and some resolve anyway, whether or not you apply a treatment.

"one day someone will be able to explain why"

I can explain why no homeopathy remedy could work, in fact you did yourself, but you seem to want to have it both ways! ;-)

(More on vaccines later - if I find time...)

Lawrence: you mention the placebo effect. So, scientifically speaking, does this mean the illness was not rea/serious or it IS possible to cure oneself purely by believing - mind over matter, in fact - or is the 'cure' not real. Of course, I realise it depends on the illness in question and maybe the person concerned as well. You can't cure a broken leg by willpower - or even a common cold!
I can see the logic of your second explanation. For example I tested positive for an allergy to cats (we have six and would never part with them). I wasn't happy about using an inhaler and taking antihistamines longterm so my homeopath gave me potentized cat fur (from freshly licked fur) and later granules diluted from the 'official' homeopathic tincture. OK, so this all smacks of hocus pocus but I'm not allergic any more. All the same, I've no doubt you'll tell me it's scientifically possible to 'lose' an allergy without treatment. : )

Grant;: thanks for replying. Yes, I'm afraid I can only speak from my own experience and i wouldn't want to push it onto other people just because I use it so, in a way, we're looking at the argument from different angles. Looking at it from a scientific point of view, you all reject it because scientifically it doesn't work. I can see that, but I also have a circle of friends and acquaintances who use homeopathy and, OK, it may be a self perpetuating myth we're creating here, but we do consider it helps alleviate many small health problems. For bigger ones -we all agree - go and see the doctor. So, yes, I do want to have it both ways, don't I?

By the way, what exactly is 'woo'. I'd guess from the context it means 'merde'!

By sablonneuse (not verified) on 19 Feb 2013 #permalink

merde can be useful

By al kimeea (not verified) on 19 Feb 2013 #permalink

but I have an open mind when it comes to certain things that can’t be explained by the laws of science as we know them.

No, you have a closed mind. Why?
You "do have room for a little ‘belief’ that doesn’t have to be based on hard fact."

And that means you have faith in homeoquackery, despite the knowledge of all the evidence otherwise. This is no different than religion.

Don't like the answers reality provides? Clutch your faith even tighter...

By al kimeea (not verified) on 19 Feb 2013 #permalink

F'ing... this blog is eating my comments....

@Sablonneuse

i can’t answer all your questions but I would like to hope that by now they have figured out which substances are toxic and which are not.

So I take it that means you don't know how they test for safety, or whether they do or not?

I do have room for a little ‘belief’ that doesn’t have to be based on hard fact.

As I suspect, you take it on faith alone. You don't ask for evidence of efficacy or safety. And yet, you come here and tell us that vaccines should be safe.

Once again, I'd like to point out to you that you seem to be using one set of standards for homeopathy, and another for vaccines. Even though both would require safety and efficacy.

What makes it worse is that you accept homeopathy blindly, but require scientists to use evidence before you'd accept vaccines. So for homeopathy it exists in this magical realm of faith, and vaccines it exists in a world where evidence and facts matter. Please now go look up the definition of "cognitive dissonance".

@Sablonneuse

but I have an open mind when it comes to certain things that can’t be explained by the laws of science as we know them. Do you not think there’s a possibility that there is still more out there that scientists haven’t yet discovered?

This is a logical fallacy. "If science hasn't proven X, that doesn't mean that X isn't real". Except of course, that X has any number of testable claims (ie. homeopathy can treat AIDs), that can then be studied. If it has been studied - and homeopathy has been - then we look at the results. If the results say, "there is no effect" then you don't get to say "you simply haven't proven it". No, you have to accept that there's probably no effect.

Continue: "if science hasn't proven X, that doesn't mean that X isn't real". Yes, there are many things undiscovered. However, I have a pink invisible unicorn in my backyard. Science hasn't proven that it's there, but I'm sure it is - are you going to take my word for it, or are you going to ask me for proof? And my neighbour next door, he has a homeopathic version of the pink invisible unicorn. Do you believe him more than you believe me, or do you ask us both for proof?

Not being a scientist or a mathematician I can’t really take this argument any further but I’ll be interested to hear what you have to say.

Sadly I'm in the same position: I'm not a scientist and I'm terrible at maths. That's why I let the others tackle that stuff and I leave myself to points I can actually comprehend and explain.

However, from my understanding, the issue is that you have to balance the side effects and benefits of BOTH getting an illness, and getting severe side effects from the vaccine. The statistic say that the benefits of the vaccine far outweigh the risks of receiving side effects; and the risks of getting the illness outweigh any potential risks from the vaccine.

Returning back to homeopathy for a moment: the reason why I'm asking questions about how you determine the safety of it is because I want to know how you think. If you don't look for, ask for, or understand how safety is determined for homeopathy, you're likely not to understand how safety is determined for vaccines. If you don't know how safety is determined for either, then it's extremely likely you also don't have a good basis for criticising the use of vaccines....

@Sablonneuse

...
If you accept homeopathy based on faith alone, it might mean you have accepted misinformation about vaccines without realising it. It might also mean that you need to stop putting so much faith in what you experience, and learn more about how the human mind tricks itself and why science and medical trials were invented.

As an example, I've been suffering from asthma. At first I thought I just needed to dust, and sometimes I thought I was reacting to some herbal tea, and sometimes I thought it was my cat.... and so on. The problem is that my asthma would get better and worse and then better, etc. So it was hard to know what exactly might have been the cause. The trouble is that I can't work it out like that: I may not be aware of other factors that somebody trained in medicine might know; I might ignore one thing in favour of another (maybe unwilling to give up laziness makes me unfit, which causes my asthma). Or I might simply be experiencing a long-term problem due to an environmental or underlying health issue which can only be found through serious testing. Sure, I can cut out tea and I can "think" I'm feeling better - but am I actually better?

The only way to know for sure is to properly test things, and properly control for the mind playing tricks on you. One person is not enough to tell whether something works or not, or whether something is safe or not. Different people react different ways, which is why medical trials try to include as many people as possible so they can take an average of the benefits, side effects and so on.

Yes, I’m afraid I can only speak from my own experience and i wouldn’t want to push it onto other people just because I use it so, in a way, we’re looking at the argument from different angles. Looking at it from a scientific point of view, you all reject it because scientifically it doesn’t work.

This is known as the "other ways of knowing" fallacy. I can't seem to find a decent definition of what it means, so I hope I can do justice to it:

"Other ways of knowing" is basically saying that you can pick and choose facts. The sun will rise tomorrow in the east, no matter if you choose to believe in it or not. Your "different way of looking at the world" doesn't mean that the sun will rise in the west for you, and in the east for everyone else. Facts are facts, no matter what prism you see them through.

As for "woo", try googling "what is woo".. I'd put in the link, but I think the site is eating it.

(Severe apologies for the multiple, and probably by now, very repeated, comments)

@Sable - growing up, I had terrible migraines. One of the tests that was conducted was an allergy test (this was after a few years & yes, we had cats in the house). Turns out I was just about allergic to everything, cats, dogs, dust, pollen, grass, etc.

The kick of it was, I showed no real symptoms (the migraines were related to allergies) of any allergic reactions in my normal life, despite what the tests said....so yes, it is very possible for allergies to just "go away" on their own.

As to the "placebo effect" most likely, you just think you feel better - if you were actually sick, you'd still be sick - you can't just wish away something like the flu...though, you can get better over time, as is what happens naturally.

flip; yes, i agree I've accepted misinformation about vaccines. That's why I've been looking for different views and found this site.
Yes, I've googled 'woo' and it came up with the modern definition. Thanks. Google translation only gave "courtiser".

By sablonneuse (not verified) on 19 Feb 2013 #permalink

About allergies going away, they do you know.
One of my grandchildren had a peanut allergy and it went away. This was verified by tests at an allergist's office. Another one had a milk allergy, with the same outcome (also verified by tests), so this could very possibly be what has happened to you.
I love that you come here looking for facts.

Sableonneuse:

Looking at it from a scientific point of view, you all reject it because scientifically it doesn’t work. I can see that, but I also have a circle of friends and acquaintances who use homeopathy and, OK, it may be a self perpetuating myth we’re creating here, but we do consider it helps alleviate many small health problems.

You need to look at the history of homeopathy and some of Hahnemann's original notions. That was two centuries ago, has much changed in homeopathy versus actual medical practices? Hahnemann had decided there were miasms that he could cure with homeopathy.

I asked you this earlier, but you seem to have missed it: a couple of those "miasms" were gonorrhea and syphilis. Now ask your homeopath how she/he would treat those if someone presented the symptoms of one of those bacterial infections.

Oh, and this part: "OK, it may be a self perpetuating myth we’re creating here, but we do consider it helps alleviate many small health problems."

So does mommy's kiss. The problem is that most of the small health problems are self limiting, and only need time to get better.

I was for a while considering buying homeopathic tablets to use as placebos when my kids were fussy. But as not all homeopathic tablets are really harmless (a surprising number are actually untested drugs labeled "homeopathic" as a regulatory shortcut), I decided not to do that after all.

Allergies do fluctuate naturally. I used to be allergic to peanuts and tree nuts. I scarf them by the handful now. ;-) Alas, I never did lose the cat allergy, so I have to continue with the cat-free household.

By Calli Arcale (not verified) on 19 Feb 2013 #permalink

My problem is not with using woo to heal small problems but as a cure for cancer or AIDS or other life-threatening illnesses.

@ sablonneuse:

What you say is true: if each vaccine carried a risk of 1 per million then giving two would increase the risk- you even hint at interaction- but let's even assume that there's no overlap of risk : 1 per million plus 1 per million plus 1 for the interaction- that still would be only 3 per million. That would still be a very small risk of 1 per 333 333. I think it's actually smaller.

Although I believe that there are things that science hasn't explained, I would hold that most of the arguments used by alt med to justify their activities ARE already explained by general science- physics, chemistry, biology and psychology.

A physicist said that we must make sure we're not fooling ourselves - we're the easiest ones to fool. When you are experiencing the illness or the cure, you can't stand outside of yourself and observe dispassionately; also if you are testing your pet theory or an idea for a new product to market, you aren't exactly neutral.

Science gives us methods of becoming more neutral: using large numbers of subjects, blinding, using statistical analyses, outside observers, publication and replication by others.Then it is not just ourselves and a small number of selected subjects but a representative sample of the population at large done using procedures agreed upon by others and published for everyone to see and criticise.

A study that 'implicated' vaccines in the causation of autism was done using only 12 subjects- there were more experimenters ( 13) than there were subjects! It frightened parents away from vaccines enough that diseases that had declined sharply because of vaccines began to re-appear in the western world. It concerned giving three vaccines together.

There was more wrong with this study: the subjects were not randomly recruited ( but came through an advocacy group and their lawyer), the main experimenter was not a neutral party- he had a patent for a single vaccine; fixing data and other ethical issues were also involved.

When I first read this study, I felt something was wrong: it didn't fit what I had studied previously about development. No one else had found this connection.

A few years later, my cousin feared for his newborn child: would vaccines harm him, he asked? I said that I have no problems with vaccination and that I DID have problems with the study that had frightened everyone.

Little by little, the author's tampering and malfeasance was un-covered and he was cast out of the medical profession.

Similarly, a psychologist was found to have created data: it was revealed after his death; however his material affected how children were educated, especially the poor.

Through publication, both studies were available to scientists and the general public: researchers, who were not in either of the authors' camps, found different results. They were not compromised by either monetary aims or possible prejudice like the originators I discussed. Recently, a major journal ( BMJ) requested its authors to make their data available on publication.

Science allows us to look beyond our own perspective, prejudices and error, to observe and describe what may actually exist.

By Denice Walter (not verified) on 19 Feb 2013 #permalink

I am EXTREMELY placebo-susceptible. This is why I like to be scientifically rigorous before I spend my money. ;)

By Melissa G (not verified) on 19 Feb 2013 #permalink

By the way, what exactly is ‘woo’.

I like the word. It puts me in mind of spooky Theremin sound effects playing in the background while some New Age magical claim is 'explained' with a melange of sciency buzzwords.

By herr doktor bimler (not verified) on 19 Feb 2013 #permalink

Chris: I thought the miasms were kind of 'categories' of patients but I may well be wrong. When it comes to contagious diseases I think homoepaths use nosodes - taken from actual infected material - but I can't really get into this discussion because I don't know enough about it.. I don't see my homeopath very often because she ilves in England and leads a very busy life despite being very ill herself. (When I ask for her advice she always gives it without charge and when she comes to visit me she usually brings remedies - again at no cost. Though, of course, in France they are readily available at most chemists and sometimes even with doctors' prescriptions)

Denice: thank you for your very full and clear explanation. I agree that the study was small and badly carried out but IF he suspected a problem, wasn't he wise to try to ring alarm bells - just in case? He may have genuinely believed that a single vaccine was better and despite the fact that his findings were disgraced there are still homeopaths who believe that there was some truth in it. This has, of course, influenced my views because my homeopath is convinced that some cases she has seen were induced by the MMR vaccine. I regard her as a sincere and intelligent person so you can understand why I sometimes have problems taking in the scientific evaluation. It's a bit of a shock to the system!

Now I have a question: How can you all be sure that every scientist's research is absolutely reliable? Scientists are human too and may be tempted to 'tweak' data to help prove a point - or worse, deliberately misrepresent results. I'm thinking of the case of the UEA scientists whose emails showed a certain amount of 'playing with the data' in their research on climate change as an example.

By sablonneuse (not verified) on 19 Feb 2013 #permalink

Similarly, a psychologist was found to have created data: it was revealed after his death; however his material affected how children were educated, especially the poor.

In another case similar to the Burt episode, did you see the recent expose of Wertham? A doctor who campaigned in the 1950s against garish comic books ("The Seduction of the Innocent" -- allegedly their graphic depictions of sex & violence were turning susceptible youths into delinquents) left enough of his raw case notes lying around for someone to go through them systematically. The anecdotes he reported in his books and in congressional hearings turned out to bear little relationship to what he had recorded in his research.

By herr doktor bimler (not verified) on 19 Feb 2013 #permalink

@sablonneuse

How can you all be sure that every scientist’s research is absolutely reliable?

You want to look for replication by other scientists. If you only find one paper claiming X and every other paper says Y, then that one paper is more likely to be in error. If there are no other papers, do your best to evaluate the study - seek out scientists in the field (e.g., at respected universities) to get their opinions, but reserve judgment until more studies have been done.

regarding that idea that the risk associated with receiving 2 different vaccines might increase multiply rather than additively ("perhaps it more than doubles because they are given together"), recall the human immune system is demostrably capable of dealing with thousands of individual antigens we're exposed to from our enviroment, diet, etc., on a daily basis without adverse event. A newborn is exposed to more antigens in the first 5 minutes after delivery than it would ever see during as a reult of the most aggressive vaccination schedule imaginable. One or two vaccinations, particularly with the current acellular vaccines? Far less than the proverbial drop in the bucket in terms in terms of total antigen exposure.

@sablonneuse

"Now I have a question: How can you all be sure that every scientist’s research is absolutely reliable? Scientists are human too and may be tempted to ‘tweak’ data to help prove a point – or worse, deliberately misrepresent results."

It's why scientific results are decided on the weight of the scientific community, not just one person, and the weight of evidence, not someone's "word".

Not because of potential fraud, just the innocent ordinary issue of things being complex so initial arguments frequently will have winkles that need ironing out.

You're jumping straight to fraud before the ordinary reasons - overplaying the card and a bit of a straw-man.

Note this is also a reason not to trust the "word" of a practitioner whose treatments lack a weight of evidence. (Substitute a long list of practices that lack evidential support for 'practitioner'. You guessed it: homeopathy is one of them ;-) )

@sablonneuse - see wikipedia, etc., for miasmic theory - it's an historical idea that "foul atmospheres" caused illness. (Foul as in smelling bad.)

Think of it as an association of environment and illness before bacteria, etc., were known. Naturally it's long been discredited. It's fun as a piece of history and you can see where it comes from. If you trace back the origins of some of these things like homeopathy you'll find they're founded on things like this, which is why some of us find it embarrassing they still exist.

"I regard her as a sincere and intelligent person so you can understand why I sometimes have problems taking in the scientific evaluation."

People can be sincere and wrong, even otherwise intelligent people. Better to rely on evidence and a community of people who are willing (too willing!) to criticise each other's work to suss out what's right and what's not.

JGC: I was under the impression that a baby's immune system took a little while to develop (that he/she relied on breastmilk to 'fill the gap' at first) but maybe that's an old wives' tale. Because of this it concerned me that a developing immune system might be at risk from too much' prodding into action'.

Grant: like your cheeky reference to homeopathy again.
Perhaps I should have said "at worst" instead of "worse" so that it doesn't look as though i'm jumping straight into accusing anyone of fraud but in the case I quoted it did look like deliberate misrepresentation agreed by a small group of researchers. Note I did NOT suggest it happening in medical trials. ;-)

By sablonneuse (not verified) on 19 Feb 2013 #permalink

Now I have a question: How can you all be sure that every scientist’s research is absolutely reliable?

To echo Grant's message, it is well known that not every paper published is equally valuable and not every announced discovery can be repeated. Highly reputable scientists make errors. Examples that come to mind that you may have heard of include the apparent discovery of a particle that moved faster than light at CERN (it didn't), the use of vitamin C to cure influenza, and cold fusion. While those were pretty spectacular claims that didn't pan out, science is full of things that one team believes they have found, only to discover later that they more sort of didn't.

I’m thinking of the case of the UEA scientists whose emails showed a certain amount of ‘playing with the data’ in their research on climate change as an example.

You may be interested to learn that 8 different investigations found no evidence of fraud or misconduct. They also found that the UEA data was in line with that used by other independent groups.

By Mephistopheles… (not verified) on 19 Feb 2013 #permalink

@ sablonneuse:

Merci beaucoup.
I try, I really do.

If the researcher ( named Andrew Wakefield -btw-) was concerned about a real effect that harmed children, he would have first consulted with others, later tried to replicate his own work ( he didn't) and would not have 'stacked the deck' by choosing subjects who came from biased sources ( a parents' group, a lawyer's clients)- if the effect was REAL, it would have shown up in larger samples drawn randomly from the population, done fairly and ethically. No need to change data. Or fear transparency.

People may support him or the other cheater ( Sir Cyril Burt) because their results fit in well with preconceived notions which might be common in our era. Some people fear pharmaceuticals and opt for 'natural products', so they'll continue to fear vaccines; others may believe that intelligence is solidly based in hereditary, not shaped by environmental influences, because of their political beliefs and prejudices about poor people and minority groups.

Both of these fellows' work was suspicious to many experts in their fields but may have enjoyed some popular support because of the subject matter- a matter for sociologists and social psychologists to investigate. One of my profs went into a long tirade about the fraudulent psychologist and taught us about how he was found out.

Both were exposed through the general press, IIRC by the same newspaper. Public interest is an important factor in attempting to find ways to keep research 'clean': people are working on it right now. You'll be hearing more about it soon.

By Denice Walter (not verified) on 19 Feb 2013 #permalink

How does fraud get found out?
these two got caught because there was something suspicious about their data- or in Wakefield's case, how he himself behaved as well.
Their results did not fit other previous research well. Data was not replicated by others who were not directly connected to the principals - and in Burt's case, correlations, in diverse instances, were remarkably similar- actually the same, to three decimal places ( highly unlikely in the real world) as well as other issues.
Wakefield refused to replicate his own work and made a fuss about being interviewed.
I wonder if Wakefield may have learned something about how to cheat from the earlier case and its un-covering- his own fixed data were not as 'perfect' as Burt's- but he messed up in other interesting ways.

By Denice Walter (not verified) on 19 Feb 2013 #permalink

While infant is protected during gestation by maternal IgG's which are able to cross the placental barrier, and after birth if nursing also by additional classes of maternal antibodies (IgE's, IgA's, IgM's, etc.) received its mother's milk, the infant's immune system is capable of responding to multiple antigens at birth. It's lesst that it needs further development as that it's naive (unchallenged)--it's just emerged from what was an essentially sterile environment into the big bad dirty world.

If we accept that the infant immune system is immature and requires additional time to develop, my point of still stands: the infant will be exposed to orders of magnitude more antigens from environmental sources in the first five minutes of life than it will ever see as the result of routine immunization. If 'too many too soon' represents a real problem we'd all of us have had our immune systems overwhelmed in infancy.

sablonneuse:

Chris: I thought the miasms were kind of ‘categories’ of patients but I may well be wrong. When it comes to contagious diseases I think homoepaths use nosodes – taken from actual infected material – but I can’t really get into this discussion because I don’t know enough about it.

It is common that many of the defenders of homeopathy actually know very little about it. Miasms are what Hahnemann thought caused the disease. For a more complete explanation read this:
http://www.skepdic.com/homeo.html

Sablonneuse, who is not a native English speaker, asked a really good question:

By the way, what exactly is ‘woo’. I’d guess from the context it means ‘merde’!

Not exactly "merde".

Rational Wiki on Woo.. There are subsets of woo, such as science woo ("woo that confuses science with magic, often in the heads of the people espousing it").

Also see Tooth Fairy Science (""Tooth Fairy science" is an expression coined by Harriet Hall, M.D., (aka the SkepDoc) to refer to doing research on a phenomenon before establishing that the phenomenon exists. Tooth Fairy science is part of a larger domain that might be called Fairy Tale science: research that aims to confirm a farfetched story believed by millions of scientifically innocent minds.")

I would highly recommend that you look for Dr. Hall's presentation on Tooth Fairy Science -- rich with detail.
Only using one link to avoid the moderation pit.

And for Sablonneuse, the nine red flags for woo:

Woo most always contains most of the following characteristics:

A simple idea that purports to be the one answer to many problems (often including diseases)

A "scientific-sounding" reason for how it works, but little to no actual science behind it; for example, quote mines of studies that if bent enough could be described in such a way to support it, outright misapplication of studies, or words that sound scientific but make no sense in the context they are used in

It involves the supernatural and paranormal (not necessarily)

A claim of persecution, usually perpetrated by the government or the pharmaceutical, medical, or scientific community

An invocation of a scientific authority

Prefers to use abundant testimonials over actual scientific research

A claim that scientists are blind to the discovery, despite attempts to alert them

A disdain for objective, randomized experimental controls, especially double-blind testing (which are kind of what makes epidemiology actually, y'know, work)

And, usually, an offer to share the knowledge for a price.

You can see how homeopathy has many of these markers.

People may support him or the other cheater ( Sir Cyril Burt) because their results fit in well with preconceived notions which might be common in our era.

This is worth stressing (though not particularly relevant to the topic at hand). The proof that Burt was fabricating his data was evident right at the start, but they were accepted anyway because he was telling people what they thought they already knew.

By herr doktor bimler (not verified) on 19 Feb 2013 #permalink

Miasms are what Hahnemann thought caused the disease.

Note that miasm "theory" is an active field of study. Unfortunately, Dimitrialis seems to throw Hahnemann under the bus by asserting the existence of "infectious agents."

If the root of a disease e.g., childhood asthma, stems directly from a history of gonorrhea, even a few generations ago, then often, only Medorrhinum will ultimately cure it and take the susceptibility away. No other remedy will do this.

Yes, time-traveling gonorrhea. Part 2, which begins with "Part Three," is here.

Cancer is the only miasm that does not stem from an infectious disease. The other four all have an infectious disease or contagion principle involved in it. However, for all intensive purposes, it conforms to all the other major criteria for a miasm, in that there is a distinct inherited disposition to it, there is a clear nosode with a profound remedy image and there is a larger pattern of physical and mental symptoms and behavior connected to it.

In other news, Creutzfeldt-Jakob is part of the "AIDS miasm."

@Sablonneuse

i agree I’ve accepted misinformation about vaccines. That’s why I’ve been looking for different views and found this site.

It's great that you've been willing to go and read more; I really do hope that you consider my points about how you trust homeopathy vs how you distrust vaccines.

Though, of course, in France they are readily available at most chemists and sometimes even with doctors’ prescriptions)

If there's no substance left in the homeopathic treatment, why do they need to provide a prescription for it? And whether there is or isn't any substance in it, this practice implies that homeopathy comes with risks - otherwise it would be an over the counter medication.

I regard her as a sincere and intelligent person so you can understand why I sometimes have problems taking in the scientific evaluation. It’s a bit of a shock to the system!

This is the problem - you are trusting of the person, rather than the data. I return to my original question: how do the homeopaths know what is safe and what is not?

Now I have a question: How can you all be sure that every scientist’s research is absolutely reliable? Scientists are human too and may be tempted to ‘tweak’ data to help prove a point – or worse, deliberately misrepresent results. I’m thinking of the case of the UEA scientists whose emails showed a certain amount of ‘playing with the data’ in their research on climate change as an example.

This is another example of you believing misinformation (there are plenty of science-based websites that discuss the issues of climate change that have more info). You need to stop believing everything you hear/read and check people's sources or read the original data.

As for your question: scientists publish data. Other scientists then go and double check that data. If errors or fraud is found, then the second lot of scientists publish that information. On the other hand: how do you know if the homeopaths are reliable? Do they publish data so you can check it for yourself? Do they allow other people to test their treatments and report the truth of safety/efficacy?

Yes, scientists are human: so are the homeopaths. The difference is the homeopaths go out of their way to ignore or not bother with providing evidence. Scientists on the other hand allow for their work to be shredded by other scientists, because it's the only way to ensure every possible answer is looked at and tested.

In fact, the whole point about repeatedly asking you about how homeopaths know is so that you consider that they might not actually know anything: that they might actually be guessing, and might be completely unreliable because they don't KNOW but rather GUESS.

@DW

Thanks for saying what I was trying to in a clearer manner.

@Narad

So not only does the water have a memory, but so does the miasma?

Sablonneuse

In case it's of use: I gathered some primers on vaccines in this post (lillady added a couple more in the comments).

flip: you say "If there’s no substance left in the homeopathic treatment, why do they need to provide a prescription for it? And whether there is or isn’t any substance in it, this practice implies that homeopathy comes with risks – otherwise it would be an over the counter medication.".

It's not that the remedies are considered 'prescription only'. You can buy them over the counter, but if a doctor gives you a prescription (and many doctors are also homeopaths) then they're free. Of course, it's not just in France that homeopathy is widely accepted -the British royal family use it too. But, yes, I know that doesn't make it scientifically right!.

I think it's unfair to suggest that homeopaths don't 'know' anything. They (should!) undergo a rigorous training but the problem is that instead of concentrating on the disease in question they also have to consider the patient as a whole in far more detail than a medical doctor would find necessary/useful - or even have the time for. They do know which remedies are indicated but there are lots of them to choose from for each symptom. It's making this choice that requires a bit of 'educated guessing'. They don't always get it right first time.

Grant: I've started looking at your link -which led to other links and it reminded me of the whooping cough epidemic reported on the BBC website where they stated that Repevax was being recommended for pregnant women. The Repevax website clearly explains all the pros and cons
http://www.medicines.org.uk/EMC/medicine/15256/SPC/REPEVAX/#CONTRAINDIC… and at 4:6 states clearly that:

"The effect of REPEVAX on embryo-foetal development has not been assessed. No teratogenic effect of vaccines containing diphtheria or tetanus toxoids, or inactivated poliovirus has been observed following use in pregnant women. Limited post-marketing information is available on the safety of administering REPEVAX to pregnant women.
The use of this combined vaccine is not recommended during pregnancy".

In view of that last sentence I am alarmed that it was lauded as a good idea for pregnant women to have it. Does it mean health officials don't bother to read the manufacturers' own research results before making a product available?

Oh dear, I'm spending far too miuch time on my computer. Poor dog hasn't had her walk yet!

By sablonneuse (not verified) on 19 Feb 2013 #permalink

@sablonneuse

Pointing at someone and saying "they use it" doesn't make using it a good idea. (As an example, any number of famous people have taken "class A" recreational drugs - does that make it a good idea to take them too?)

You really ought to be looking at the *evidence*. It's what it comes down to the end.

For example, there is an extensive examination of the evidence for homeopathy by the House of Commons Science and Technology Select Committee:

http://www.publications.parliament.uk/pa/cm200910/cmselect/cmsctech/45/…

(There's an earlier evidence check that might be more relevant and more documents but I don't want to link them all as more than a couple of links will cause this comment to be treated as spam.)

The links my post point to are explaining how vaccines work and giving the overview. You'll do better if you read this first before diving off into details (or sidetracking as you seem to have). It's easy to spot a number of the anti-vaccine myths if you know the basics.

"Does it mean health officials don’t bother to read the manufacturers’ own research results before making a product available?"

Of course they read them. They also read the medical research literature and take advice.

If you do more reading you will find that the *medical* advice is that (some of) the whooping cough vaccines are recommended to be given to pregnant women. (Before the last couple of weeks of pregnancy.) Others can fill you in on the details. (Like Orac, I'm a bit busy with a grant application!)

I strongly suspect that the document you link to gives the contents of the little leaflet that the company includes with the vaccine. Disclaimers will be in these for *legal* reasons. (Companies have to protect themselves.) You need to look for the *medical* advice.

Anti-vaccine groups lately are holding up various disclaimers as if they were medical advice - these people are scaremongering or poorly informed. I've seen similar nonsense on the same issue from the local anti-vaccine group.

sablonneuse

a man in NZ(?) trusted his sincere and knowledgeable homeoquack for a cut on his foot

use manuka honey it will heal quickly was the patter

it is getting worse says the man, no that means it is healing naturally

the man, a diabetic, followed the advice to the end and died after waiting too long

there has to be something behind the sincerity and there is nothing in homeopathy to suggest it should or does work, despite your anecdote and the niceness of your homeoquack.

It has been studied 9 ways from Sunday and come up lacking. The US has spent over a billion dollars studying merde like this and quelle surprise - sugar pills are no better than sugar pills.

above a 24X (?) dilution you would have to begin eating olympic sized swimming pools full of pills to even have a remote chance of swallowing a single molecule of the cure.

Add to this, homeoquackery only seems to work on the the things homeoquacks say it does, while scientific dilution works on anything.

All these other issues you raise have nothing to do with homeoquackery being snake oil, which has been said, at lest had some snake in it.

It is ridiculous that France pays for this delusion de l'eau, what a waste of money and resources.

By al kimeea (not verified) on 20 Feb 2013 #permalink

I get the feeling I may be annoying some of you now. I concede that many of my preconceptions on vaccines were mistaken and thank all those who have explained patiently and fully.
As for homeopathy - call it stupidity, pig headedness, delusion -what you will - but I am having trouble accepting the science. You have all been very helpful and there are still plenty of links for me to explore. I shall carry on reading but - and I mean it this time - I'm bowing out of this discussion for the time being.
Who knows, I may not be able to resist popping up again on a different post but feel free to ignore me!
Here's wishing all the best to all of you.

By sablonneuse (not verified) on 20 Feb 2013 #permalink

@sablonneuse

In view of that last sentence I am alarmed that it was lauded as a good idea for pregnant women to have it. Does it mean health officials don’t bother to read the manufacturers’ own research results before making a product available?

As Grant said, it seems like that is from the package insert for the vaccine. By law, manufacturers cannot state things in there that they have not actually studied and submitted to regulatory agencies for approval. There are a lot of caveats and disclaimers in there to cover legal liabilities.

If they say that safety has not been assessed and that it is not recommended in population X, then it means that that particular company has not studied it. Since they have not studied it, they cannot make claims about its safety. Since they cannot make claims about its safety, they cannot recommend its use.

Government agencies, however, have a much greater scope of information from which they draw to make recommendations. In addition to what they receive from manufacturers, they also look at independent research that has been published in the medical literature, info from other manufacturers, in-house research, adverse event reports, and so on. They often have significantly more information available to them upon which they base their recommendations.

A common anti-vaccine tactic when a vaccine is recommended by a government agency for use in a special population (e.g., pregnant women) is to pull out the manufacturer's package insert for the vaccine and point at the statement that it has not been assessed for safety in that population. They ignore all of the other medical and scientific literature that has looked at the safety of the vaccine in that population.

@sablonneuse

I don't think you're annoying anyone. You are asking good questions and seem to be making an effort to learn more.

Here is a question for you to ask regarding homeopathy: if you take several potent (e.g., 12C or greater) homeopathic remedies to a homeopath, how can they tell which remedy is which? When you get it, how can you determine if it is actually the remedy you requested, rather than simply water, alcohol or sugar and whatever other non-active ingredients they might use?

You don't need to answer...just some questions to ponder.

Wrote sablonneuse,

I get the feeling I may be annoying some of you now.

I for one am not annoyed. Having to explain why homeopathy is "the one woo to rule them all" (as our esteemed host puts it) to a person who is semi-believing helps me sharpen my thinking.

And untangling your preconceptions (or misconceptions) about vaccine safety and efficacy makes me a better advocate for vaccines.

Not annoyed at all. Also, by answering her, we are providing the lurkers with additional material.

By Denice Walter (not verified) on 20 Feb 2013 #permalink

re #258: as a semi-lurker: just so. Very useful & entertaining, too.

@Sablonneuse

I think it’s unfair to suggest that homeopaths don’t ‘know’ anything. They (should!) undergo a rigorous training but the problem is that instead of concentrating on the disease in question they also have to consider the patient as a whole in far more detail than a medical doctor would find necessary/useful – or even have the time for. They do know which remedies are indicated but there are lots of them to choose from for each symptom. It’s making this choice that requires a bit of ‘educated guessing’. They don’t always get it right first time.

Sigh... you miss it again. Basically your whole paragraph can be summed up as "I don't know how they know it works, they just do!" which is about as useful for proving a treatment's efficacy and safety as using a magic eight ball.

Basically you are confirming for me that you simply trust what they tell you, haven't looked into the safety/efficacy of homeopathy yourself, don't know how they test for efficacy/safety, don't care if they do or not, and therefore have no reason to then demand better evidence from scientists about vaccines. You ask for no evidence from homeopaths, why ask doctors for evidence? You have double standards.

You also use the "holistic" fallacy, which is torn apart on this blog in many places: doctors also treat the whole person. They always have and always will. Anyone who says they don't are feeding you misinformation. Doctors also use a bit of guesswork as the others have suggested, since not everyone is the same and there can be many symptoms that fit many illnesses with many different causes. The only difference is that doctors rely on consensus, data, rigourous testing as a basis for their decisions; homeopaths don't.

I really just want to focus on the issue you have with vaccines, and don't want to get too distracted with the homeopathy; however, the way you look at homeopathy is important to how you also look at vaccines.

So I'm going to keep harping on this point: you ask for evidence that vaccines do what they say they do. You do NOT ask for evidence that homeopathic products do what they say they do. You are biased, you accept homeopathy on blind faith. And yet you ask questions of vaccines.

I'm merely suggesting that you should question BOTH, but follow the evidence and not your gut feeling.

I get the feeling I may be annoying some of you now. I concede that many of my preconceptions on vaccines were mistaken and thank all those who have explained patiently and fully.

On the contrary, I find it refreshing to discuss these things with someone willing to consider the evidence, rather than throwing a tantrum or calling names once we start disagreeing with them. I think you deserve a big thumbs up for it actually. And especially for taking the time to read and think about what you've read. (I understand that my tone may appear exasperated, that's only because I've had a long few days)

How can one be given rigorous training in homeopathy, in the absence of any actual evidence homepathic remedies are actually effective at treating the indications homeopath's claim they're effective for? All such training could consist of is studying and accepting anecdotal or otherwise unsupported claims made by other practicing homeopaths.

As a proposal it's subtantively no different than suggesting faith healers all receive 'rigorous training' in intercessory prayer.

"Rigorous training" in homeopathy is a contradiction in terms insofar as there is no scientific basis for homeopathy. Homeopathy has no "rigor". There are other instances, however, of "rigorous training" in systems that have their basis on fantasy and/or the supernatural.

Yes, a few minutes worth of searching the 'net will turn up training, diplomas, advanced diplomas and professional training in arcanae like reiki, energy medicine, medical intuitive counselling, herbalism, nutrition, de-toxification, accupuncture, reflexology, TCM, chelation therapy, chakra balancing, ayurveda, aura reading, psychic ability, ND, Chi Gong, health coaching, life coaching, spiritual counselling etc.

I'm sure that you also have a choice of white or black magick and distance healing: I didn't look.

By Denice Walter (not verified) on 20 Feb 2013 #permalink

Here’s wishing all the best to all of you.
And to you...
NO NO we must be cannot accept the power of WISHING -- not without evidence!

By herr doktor bimler (not verified) on 20 Feb 2013 #permalink

“Rigorous training” in homeopathy is a contradiction in terms insofar as there is no scientific basis for homeopathy. ... All such training could consist of is studying and accepting anecdotal or otherwise unsupported claims made by other practicing homeopaths.

Wouldn't drinking a lot of water on a regular basis qualify as "rigorous training" in homeopathy?

I discovered the Homeopaths Without Borders group today. What a ruthless bunch of people I see that Orac has already covered them in the past.

Rigorous practice of homeopathy, maybe--for it to be rigorous training you'd have to practice hitting that glass of water a few times with a bible before drinking.

I was thinking along those lines when I read sable's comment that in France if you have a doctor's prescription for a homeopathic remedy it's free: why not just drink directly from the tap at home getting the same remedy at effectively the same cost? You'd avoid the annoyance of having to run out to the doctor and pharmacy.

@JGC

Quite clearly the tap water hasn't been succussed. ;)

Those are good points, JGC.

What I'm now wondering is that if the dilutions are harmless, then why not put the homeopathic remedies into the drinking water supply for a few small towns? They could do that as a medical trial of homeopathy. If after the end of six months, the members of the treated towns who had chronic illnesses are suddenly healed, yet similar members in the untreated towns are not, then it would help evidence their claims. Would it not, or is that too easy?

Sablonneuse, I think we have all really enjoyed having you on the thread, and would welcome you to comment and hang around with us any time. :)

Peut-être qu'un jour je vais trouver le courage d'essayer mon lycee française. :) ...

By Melissa G (not verified) on 20 Feb 2013 #permalink

@al kimeea,

"a man in NZ(?) trusted his sincere and knowledgeable homeoquack for a cut on his foot"

Do you have a link for that? (I'm being lazy here! ...well, actually, I'm swamped in reading for grant applications and whatnot.)

@Sablonneuse:

"As for homeopathy – call it stupidity, pig headedness, delusion -what you will – but I am having trouble accepting the science."

I started explaining this here. If I find time I'll put it up as a blog post (hopefully tonight) and come back later and provide a link here for you.

Hi Alison, (My break matched yours huh?)

Good grief. Maybe I ought to revisit Manuka honey as well as homeopathy? Thanks for the link.

I just noticed an open letter querying my WSJ letter response about vaccines. I will not attempt to explain all of my rationale and experience in dealing with the vaccine safety question in a short post. Suffice it to say that (1) I believe that the harm vaccines cause is considerably under-reported in the US and (2) there are simple, low cost approaches that can be used right now to reduce the risk of vaccines by 10-fold or more. All of this information is already in the peer-reviewed medical literature, but not really noticed because the medical community has such a strong bias against giving nutritional supplements and so my suggestions would fall on deaf ears. I arrived at my conclusions, in part, because my son (and others that I know) had an extremely bad reaction to the hepatitis vaccine and the first booster. The bad reactions were never reported to the CDC by the physicians. I scoured the medical literature to figure out why and what could be done. By using science as the guide as well as information about my son's own genetic make-up, I was able to mitigate his risks and have him safely vaccinated with the second hepatitis booster as well as with a number of subsequent vaccinations needed before he went to medical school. I believe that my solution might work well for many others but I have met a wall of resistance in discussing it with anyone in the medical community, in part, because physicians lack the extensive biochemical training and experience that I have.

By Professor Jurnak (not verified) on 26 Feb 2013 #permalink

there are simple, low cost approaches that can be used right now to reduce the risk of vaccines by 10-fold or more.

What exactly are these approaches? I suspect that these approaches are neither as simple nor as cheap as you think.

I meant ever word - simple and low cost, but I would need an entire blog or two to explain. Otherwise my words would be misconstrued and misapplied by many.

By Professor Jurnak (not verified) on 26 Feb 2013 #permalink

@PJ - please enlighten us - I would love to know exactly how you accomplished the "genetic screening / sequencing" of your son, in what sounds like the late 1980's or early 1990's....in a cost-effective manner.

Professor Jurnak,

I for one would be interested in your suggestions and scientific evidence for same. If you know ways to better determine which children are at risk of adverse vaccine reactions or to prevent such reactions, that would be a substantial benefit in the fight against infectious disease. Could you please share?

By Mephistopheles… (not verified) on 26 Feb 2013 #permalink

I would need an entire blog or two to explain. Otherwise my words would be misconstrued and misapplied by many.

Ah, so I guess we're just supposed to believe you without any evidence. My particular expertise happens to be in developing genetic tests for clinical use. If that's the type of thing you're referring to, it's certainly neither simple nor cost-effective at this moment (this may change in the next decade). I was hoping to engage in an actual, rational discussion on this issue, but apparently you're not interested. Why did you bother to post here at all then?

@ Professor Jurnak: We have open minds here.

Why do you *think* that the *harms* experienced by children post vaccination is under reported? Be specific here. Define "harms" and provide citations from reputable sources that those "harms" are under-reported.

How about those "simple low cost interventions that can be used right now to reduce the risk of vaccines by 10-fold or more"? Do you even *know* what the baseline is of kids who have been "harmed" by each vaccine is? Are you in fact, *confusing* mild reactions such as pain at the injections site, with the exceedingly rare "severe adverse reaction"?

What are those *nutritional substances* that you *claim* have been reported in journals that decrease the risk of *harm* from vaccines? How about providing some internet links, so that we could discuss them?

I'm not even going to evaluate your statement about the *harm* ("extremely bad reaction") your son experienced with the first hepatitis B vaccine and the second "booster" hepatitis B vaccine. BTW, do try to learn what a "booster vaccine" is. The second hepatitis B vaccine shot is NOT a "booster vaccine".

I have to leave for a meeting, but if I am allowed to post a lengthy post by the moderators, I am sure that I can satisfy all of your concerns. The moderators should let me know.
I do mean serious adverse reactions, not just minor harm. As for the approach, it relies upon giving selective vitamins/minerals, depending upon the type of vaccine, for a week prior and after the vaccine. Also, not all children are at risk, but I do believe that with a few simple studies, a subset of children can be identified as having the potential for risk. One such group would likely include those babies who experience severe jaundice or elevated bilirubin problems at birth.

By Professor Jurnak (not verified) on 26 Feb 2013 #permalink

@ Professor Jurnak: Please come back and post here with your extensive nutritional pre-treatment to avoid "harms" caused by vaccines. We are all very *intrigued*.

Professor Jurnak - you may want to contact Orac directly if you'd like to post something large on his blog. His e-mail address (which you can find if you click on "Orac" at the top of the page) is orac@scienceblogs.com.

Alternatively, if you've published papers on the topic, that would be interesting as well.

By Mephistopheles… (not verified) on 26 Feb 2013 #permalink

@PJ - how about just the highlights then?

herr doktor bimler - I have to admit my first reaction in reading Professor Jurnak's message was along the same lines (possibly with a touch of "they thought me mad - MAD!"). However, I looked up his profile at UC Irvine (if indeed that's the same man) and he may well be speaking simple fact.

By Mephistopheles… (not verified) on 26 Feb 2013 #permalink

@ PJ:

PMIDs for the clinical trials demonstrating the efficacy of the claimed method will suffice as a starting point. Similarly for the documentation of under-reporting.

@ herr doktor bimler:

Please don't tell me he's orthomolecular...save us.
-btw- better mauve than fauve?
I look terrific in mauve.

By Denice Walter (not verified) on 26 Feb 2013 #permalink

Prof. Jurnak, rather than post a 'blog-length' response arguing your position why not simply provide citations to what you consider to be the tow or three most compelling studies indicating 1) harm caused by vaccines is being significantly under-reported and 2) specific low cost solutions have been identified which could reduce their occurence by an order of magnitude?

Please don’t tell me he’s orthomolecular…save us

Orthomolecular psychiatry seems to be only a small aspect of Professor Jurnak's research interests, and is no reflection on the quality of her other work ("2004 President of the American Crystallographic Association" speaks for itself). Mephistopheles O'Brien #287 is probably right -- she is entitled to describe physicians as "lacking the extensive biochemical training and experience that I have".

By herr doktor bimler (not verified) on 26 Feb 2013 #permalink

Regards Professor Jurnak‘s comment #275,

I'm all for "identifying which children are at risk" (from your letter to WSJ), but there are several phrases in your comment that raise concerns for me, at least.

You wrote, "I believe that the harm vaccines cause is considerably under-reported in the US". This I think would be better phrased, "If vaccines cause serious harm, it is likely to be under-reported". (I know I'm not being very clear, but what I'm touching on here is association v. causation. An example I know something of is Dravet Syndrome, a genetic condition, cases of which were previously offered as "vaccine injury" by association.)

Two problems here, "but not really noticed because the medical community has such a strong bias against giving nutritional supplements and so my suggestions would fall on deaf ears". Firstly, this looks dangerously close to a strawman. Secondly, my own impression is that the medical community has long recommended supplements - where there is a deficiency, the latter being the catch.

"in part, because physicians lack the extensive biochemical training and experience that I have."

Sorry to be blunt on this one, but I’m leery of this, as while you might, at pinch, argue this of GPs you certainly couldn't say the same for immunologists - and the latter are the people you'd need to convince, surely.

One the subject of genome screening, what is done after you have the sequence matters considerably as I'd like to think you understand and as AdamG was indicating. (I'm generalising here, there have been some remarkable successes with identifying the cause of rare genetic disorders this way.) I’ve previously suggested genome sequencing for serious vaccine reactions, as a step towards better understanding of what causes these medical events and heading off some of the fuss from the onset.

Just for clarity: is this you expressing a personal interest in multi-vitamins, etc.?

Professor Jurnak - my apologies for writing about you in the wrong gender.

By Mephistopheles… (not verified) on 26 Feb 2013 #permalink

Apologies for the gender mixup.
However Orthomolecular Psychiatry would be a warning sign for me.

By Denice Walter (not verified) on 26 Feb 2013 #permalink

Professor Jurnak:

By using science as the guide as well as information about my son’s own genetic make-up, I was able to mitigate his risks and have him safely vaccinated with the second hepatitis booster as well as with a number of subsequent vaccinations needed before he went to medical school.

What particular gene sequence did you discover was the root of your child's issues?

My son has obstructive hypertrophic cardiomyopathy. The genetic testing failed to find the eighteen sequences known to cause HCM. I have in front of me the report from GeneDx, a company in Maryland that performs these kinds of genetic medical screens. It includes a list of genes they checked for like: MYH7, MYBPC3, TNNT2, LAMP2, PRKAG2, MTTG, etc.

I personally don't understand it, but I am sure that there are those here (like AdamG) who would be able to figure out any genes you feel make a child vulnerable to vaccines.

Obviously, you had better luck with genetic testing than we did.

I've located 4 Pages of published articles for "Jurnak" in PubMed...including the Mauve I and Mauve II articles that her doktor bimler referenced.

http://www.ncbi.nlm.nih.gov/pubmed

I rather *doubt* that "Professor Jurnak" has ever had an article published in a reliable first tier science or medical journal...for the simple reason that "Jurnak" refers to the second hepatitis B vaccine that her son received as a "booster vaccine".

When Professor Jurnak returns from the meeting, I'll be here awaiting some of the answers to the questions we posed.

I would count 'Science' and 'Proc. Natl. Acad. Sci. U.S.A' as first-tier science journals, lilady (despite occasional lapses on the part of the latter, e.g. the Larval Transfer imbroglio).

By herr doktor bimler (not verified) on 26 Feb 2013 #permalink

I have taken Mephistopheles O'Brien's suggestion to contact Orac directly and will continue the discussion with him. The events leading to my knowledge on this subject were very traumatizing ones for my family and myself. As you can already see from the posts, many are quick to jump on the prospect of quackery. I don't need this. I have valuable knowledge to share, but I will only do so, if I can present the material completely and the audience is willing to hear the story/evidence without pre-judgement.

By Professor Jurnak (not verified) on 26 Feb 2013 #permalink

@ herr doktor bimler: I located 4 pages of different articles published under "Jurnak"...and I *suspect* that "Professor Jurnak" is not the "Jurnak" listed on the PubMed link I provided.

I am one and the same Jurnak. I am an excellent scientist with a solid international reputation in the field of macromolecular structure and biochemistry. However, my best scientific work is unpublished, involving how I treated and cured my son, when the traditional medical establishment gave up on him. Using my knowledge, I have helped many others, so I know that my son's story is not just a rare, lucky anecdotal cure.

By Professor Jurnak (not verified) on 26 Feb 2013 #permalink

Well, Professor Jurnak, I am particularly interested in the genetic testing. It seems to be hit and miss, which was noted in a recent NY Times article (Feb. 18, 2013 by Gina Kolata).

Now the paper from the company that did the genetic testing for the eighteen known genes that are associated with hypertrophic cardiomyopathy included a PubMed indexed citation. It was a review paper on all of the genes associated with that particular physical anomaly that can be seen with an echocardiogram.

Do you have citations on which genes are associated with vaccine injuries?

From the letter to the editor by Frances Jurnak in lilady's WSJ link:

Moreover, beyond the popular press articles about autism and the MMR vaccine, the authors demonstrate no familiarity with the extensive medical literature which reports harm, even death, caused by vaccines, albeit in rare occurrences.

That is interesting. I am sure Professor Jurnak will provide us with all that medical literature of well conducted studies that show the MMR vaccine causes enough injury allow us to let measles, mumps and rubella to return (just like what has happened in Europe and Japan). And to save her, and us, lots of time: I hope she does not include any on this list. It became quite tiresome to see that list cut and pasted from Wakefield's page, when it did not support their claims.

Professor Jurnak,

I'm curious about your claims, as well. Anything that we can do reliably and cheaply on a broad scale to determine who will and who will not have an adverse reaction, as well as how to mitigate those risks, should be pursued. I also find it interesting that you state your best work is unpublished. Why? Would it not make sense to publish it so that other scientists could evaluate and replicate your studies?

As some others mentioned, it would be nice to see just a few PMIDs of studies that you feel best represent the evidence for your claims.

For those looking for the mauve factor papers, Medline doesn't link to them (at all), but there are scanned copies of the papers online (part I, part II).

PubMed indicates an errata for the first part, but I gave up looking for it. (Mea culpa - just short on time - it didn't turn up on searches at the journal website and they don't seem to offer a table of contents for each issue.) It's apparently at Altern Ther Health Med. 2008 May-Jun;14(3):15

Having found them, I'm not sure I'll have time to read them! (Ha.) We'll see. I wouldn't be the best to judge them, anyway. At least the links can be there for others if they interest anyone.

(lillady: thanks for the WSJ link, I should have provided it myself. I've only glanced at her publication record very briefly, but in her own field her publication looks fine. (There's a publication in Vaccine, too.) Having said that, very fine scientists can propose weak or even dubious ideas, too. It's one of the reasons, I think, that proposals ideally are best to stand on their own merits rather than previous record or "authority", just in case it's a case of a good scientist's lesser ideas.)

@lillady, thanks - that's a lot more readable!

However, my best scientific work is unpublished, involving how I treated and cured my son, when the traditional medical establishment gave up on him.

I'm curious why your 'best scientific work' would remain unpublished, since clearly you've had no problem publishing what you appear to consider your lesser scientific work. Could you explain?

I have helped many others, so I know that my son’s story is not just a rare, lucky anecdotal cure.

We routinely see reiki practicioners, homeopaths, etc. making exactly the same claim: the sheer number of people they're convinced their interventions have helped somehow renders their observations into something other than anecdotal evidence. That isn't the case.

As you can already see from the posts, many are quick to jump on the prospect of quackery. I don’t need this. I have valuable knowledge to share, but I will only do so, if I can present the material completely and the audience is willing to hear the story/evidence without pre-judgement.

Most of us are simply asking for proper citations, as needed to support any scientific claim. Is there some problem with that?

I have been traveling and did not have a chance to respond. It has given me time to reflect upon the many posts, the questioning of my credentials, and the demands for citations. Because I don’t post regularly, I am not familiar with the background of the posters and so please ignore my comments, if I misinterpret things. I have done original scientific research for years. This involves observations, hypotheses, experimental testing, adjustment of hypotheses, more testing, etc. Really nothing is ever proven, but always subject to revision. If you re-read any of my posts, you will notice that I chose my words very carefully. I did not make claims, only suggestions as to what I believe (hypothesize) based on my personal observations and extensive reading of the scientific/medical literature. Thus, I was initially surprised by the demands of proof, only three or so references out of the thousands of peer-reviewed publications that I have read over 15 years or so. Original thinking implies that there are no citations yet, otherwise the ideas would not be original. So it is simply not possible to respond to such requests for references.

After discussions with Orec, I have decided that there are more germane venues for my son’s story. However, because I was the one to initiate some suggestions about vaccines by responding to a letter on this blog, I will share with you, space permitting, a fraction of the information available to me, in hopes that some of my ideas may give you a fresh perspective on very ingrained dogmas. Read it if you want, ignore it if you want, or use it if you are in a situation where the information may be useful. This will be my last posting on this blog site.

There is a war between two opposing views about vaccinations– vaccinate all children for the good of the common, no matter what the cost or the harm to any single individual. Although the harm may affect a very small percentage of children, if it is your child, it is a large percentage and so educated parents may be reluctant to assume the risks. I suggested an alternative – seek better ways to identify those at risk and to determine ways to safely vaccinate those at risk. On this blog, I mentioned some possible approaches. At no time, did I dogmatically state that these approaches would definitively work as demonstrated by existing experimental data, only that money might be better spent in collecting the necessary experimental data to test my hypotheses as opposed to spending the money to attempt to convince skeptical parents to vaccinate their children, no matter the individual cost. If nothing is done and if “powers to be” insist that all children be vaccinated, some will die and this is equivalent to a genetic cleansing of the population not able to withstand the harmful effects that vaccinations can cause. In the long run, the latter approach will certainly eradicate diseases.

During his adolescent years, my son experienced waxing and waning episodes consistent with a disorder called porphyria. The episodes manifested in a number of ways that could be quite dangerous to himself and to others. I realized early on that the attacks were highly correlated with his states of deficiencies in B6 and zinc, as demonstrated by clinical testing. The acute form of porphyria is caused by dehabilitating mutations in one or both enzymes that initiate the synthesis of the porphyrin ring of hemoglobin. Both enzymes require B6 and zinc as cofactors, so a deficiency in these nutrients can effectively block the action of the enzymes and mimic the acute genetic form of the disorder. I supplemented my son with extra B6 and zinc to minimize the occurrence of the attacks. This helped, but every once in awhile, the attacks would still occur and I kept a notebook of the circumstances surrounding the attacks to see if I could figure out “what” was triggering the attacks. It became quite clear very early on that influenza and cold viral infections triggered the attacks, driving him into states of severe B6 and zinc deficiencies. Moreover, I could always pull him out of the attack by giving him very high doses of B6 and zinc. I had learned how to do this safely by thoroughly familiarizing myself with the relevant medical literature and consulting with an appropriate professional, but I don’t recommend anyone else doing this without professional monitoring.

When California declared that all school children needed the hepatitis B vaccine, I got him vaccinated. As circumstances would have it, I was due to speak at a scientific meeting in Europe, so I left shortly after his vaccination. I left my son in the care of my husband as well as two special caregivers who were quite knowledgeable about his many neurological problems. Within a day, I received a phone message from one of the caregivers, telling me that my son was having a severe attack and that I should come home. I left immediately and when I arrived home, I recognized that he was in a state of severe B6 and zinc deficiency, so I knew what to do and pulled him out of it over the course of a week. We had all assumed that the attack was triggered by the stress of my leaving my son for a trip. It did not occur to me at the time that there may have been any correlation with the hepatitis vaccination. So when a month had passed, and he was due for his second hepatitis shot, I had him vaccinated. Within hours, he had another attack, earmarked by his characteristic symptoms of B6 and zinc deficiency. Of course I knew what to do and cleared it up within a matter of days. During this time, I happened to post my observations on a web site frequented by parents whose children had similar neurological problems as my son. There was an immediate response from one woman who said that her daughter had just been vaccinated with the hepatitis vaccine and would be watchful. Well, within hours, the girl had such violent seizures that she had to be hospitalized. My son’s B6 and zinc deficiency symptoms do not present as seizures; however, it is well known that B6 deficiency can cause seizures in some people – those that have certain mutations in glutamic acid dehydrogenase (GAD). The girl in question was not tested for a B6 deficiency or the critical GAD mutations; nevertheless I found the two different occurrences, linked by possible B6 deficiency symptoms, to be more than happenstance. So I started searching the viral and vaccine literature. Some of you request references. I suggest you start with the 24,000+ citations that come out of a Pubmed search for “Adverse effects of vaccines”. I have read thousands of peer-reviewed literature articles over the years, but I will spare you all the details and only summarize my salient findings herein. Essentially, it is known that the hepatitis virus is a risk factor for porphyria attacks. The vaccine does not contain the live virus, but only the capsid protein, so the virus cannot replicate. I deduced, theorized, hypothesized, but did not prove, that the hepatitis capsid protein, not the entire viral particle, was sufficient to induce a B6/zinc deficiency in my son. (1) Could this happen, ie is my theory plausible, and (2) are their any scientific data to determine the validity or fallacy of my hypothesis? After reading the viral literature and talking with many virologists, including a Noble Laureate, the answer to the first question is yes – viral capsids can swell up in the presence of zinc, requiring many more zinc molecules than the actual number of capsid particles, Moreover, in some preliminary experiments, there are suggestions that certain viruses (not hepatitis) can hijack the host’s nutrient transporter systems and thus block transport of specific nutrients into the cell. The answer to the second question is no – there are no experiments yet done with hepatitis to test whether the intact virus or the capsid protein alone can trigger a B6 and/or zinc deficiency state in genetically-predisposed individuals.

Now let me also address the nature of B6 and zinc deficiency symptoms. In most enzymes, B6 and zinc are used together as cofactors and therefore must be supplemented together in certain ratios. There are over 300 known enzymes for which B6 and/or zinc serve as cofactors. When there is a massive global deficiency state, all kinds of symptoms will occur. However, as a person enters into the state of becoming B6/Zn deficient, possibly affecting one organ (usually skin) over another, the first deficiency symptoms that will express will be dependent on the genetic make-up of the individual. Of the 300 or so B6/Zn-dependent enzymes, some are likely to have small genetic mutations (single nucleotide polymorphisms, SNPs), which affect the strength of the binding site of B6/Zn. If the SNPs weaken the binding interaction between the enzyme and cofactor, this could result in a slowdown or even a halt in the particular metabolic pathway involving the enzyme. Ultimately, this would show up in some way as a clinical symptom. There are over 300 B6/Zn-dependent enzymes. The first symptoms of a B6/Zn deficiency would show up in the pathways in which the enzymes had SNPs that weakened the cofactor binding sites. In any one individual, the likelihood of displaying a particular B6/Zn deficiency symptom is 1/300 or .33%. This low percentage does not meet the standard threshold values of 1% to be considered an adverse effect or 5% to be named as a specific adverse effect. Thus, my son’s porphyria-like attack in response to the hepatitis vaccine and the other girl’s seizure response, would not meet the lower threshold values to be considered as an adverse effect of the hepatitis vaccine and would never get listed any where as a possible side effect of the vaccine. Moreover, because both my son and the girl had prior histories of their respective symptoms, the vaccine would not be considered as a culprit unless the physician actually witnessed the attacks within a short period of time after giving the vaccination. Because this did not happen, my son’s porphyria-like attack and the girl’s seizures were not reported to the CDC. You can debate the parental observations in this story, but it does raise the specter that adverse effects of vaccines are under-reported.

In reading the vaccine literature, there is a major theme that pops up time and again. Vaccines cause more harm to malnourished populations, particularly in under-developed sections of Africa. This provides a tentative link between vaccine harm and nutritional deficiencies, raising the possibility that some vaccines cause harm by inducing nutrient deficiencies in an already malnourished population. The strongest evidence for such a link is between the rubella virus and a deficiency in vitamin A. It is astounding but the claims in peer-reviewed medical articles are that one dose of vitamin A at birth can decrease the 5-year morbidity rate by 50% in these populations by mostly decreasing deaths caused by rubella infections. I won’t even attempt to summarize all the reports, but there is a clear link between rubella and vitamin A. It scares me to think that a rubella vaccination might be, in some way be hijacking some aspect of the retinol or retinoic acid transport system, inducing a vitamin A deficiency, which in turn would impair many processes in the immune system.

After learning that vaccines might induce nutritional deficiencies in individuals susceptible to harm by specific nutritional deficiencies, I gave my son high doses of vitamins, minerals, and retinol (from cod liver oil, not beta carotene) for a week prior and after a scheduled vaccination. In this way, my son was able to get his third hepatitis shot and other vaccinations without experiencing any adverse effects. Although many will think that malnourished children do not exist in the US, reading of the nutritional literature suggests otherwise. There are subsets of US children who are deficient in one or more nutrients due to poor diets, genetic mutations, stress, infections of all types (parasitic, viral, bacterial, etc.) and/or the administration of certain kinds of medications. Children who have jaundice at birth have errant metabolic pathways, some of which might be caused by genetic factors and/or medications given to the mother at birth. Children, whose families have a predisposition to early onset alcoholism, may have inherited a promoter mutation that causes a deficiency in retinol. These are just a few examples. Obviously much more would have to be done to identify children at risk of being deficient in one or more specific nutrients.

I have a great respect for geneticists. However, the search for a few single genes responsible for complex disorders has not been very illuminating to date. For example, approximately 1% of the individuals with hyperactive ADHD have a mutation in a dopamine receptor, which renders the receptor less responsive to dopamine. When one considers the biosynthesis of dopamine, there are hundreds, possibly thousands of proteins involved. If there is an adverse mutation in any one of the hundreds/thousands of proteins causing a lowering of dopamine production, the symptoms would be similar – hyperactive ADHD, yet the genetic defects (< 1% for a single protein) would not likely stand out above the background noise in a genetic screen of ADHD individuals. The situation is similar with genetic screening of individuals harmed by vaccines. One is not likely to find a strong enough signal above background for any single gene. It is like applying sophisticated techniques to thoroughly study the problems in the kitchen, but if the problems are in the backyard, the sophisticated techniques applied to the kitchen won’t result in anything meaningful. It will be many, many years before enough DNA sequences, perhaps tens of millions, are available to begin to identify sets of genes indirectly responsible for many complex disorders. In the interim, observations such as mine with my son, can possibly provide some clues as to how to narrow the search for the problem.

So what to do? I have designed many experiments to collect relevant data and have even offered my own personal funds to support pilot studies. So far, I have been thwarted by the attitudes and lack of knowledge in medical academia. I have not met any physicians (with access to relevant human biosamples) who have sufficient biochemical knowledge to understand what I am saying. To make matters worse, as soon as I use the dirty word “vitamin”, the research project becomes alternative medicine and the academic physicians think their involvement in such a project would jeopardize their big NIH-funded grants. To be truthful, I have met a few sympathetic physicians who believe what I say, but they simply don’t understand the biochemistry sufficiently to lend even minimal time to help such a project, which would by necessity involve collecting biological samples, such as urine, from patients. I have interacted with the alternative medical world, but they usually don’t work at academic institutions and aren’t able to implement the proper protocols needed for a first-rate, definitive research effort.

By Professor Jurnak (not verified) on 08 Mar 2013 #permalink

Thank you for your courtesy, Professor Jurnak, and for taking the time to explain your perspective.

By herr doktor bimler (not verified) on 08 Mar 2013 #permalink

That is all well and good, Prof. Jurnak, but I see absolutely no references to actual studies.

I did ask if you have those genetic sequences what they are in particular. It seems that you making statements about these "sensitive" children without any evidence.

Then perhaps you can provide the evidence that support a statement you made elsewhere. I will again request the support for that statement (cut and pasted from my comment):

I am sure Professor Jurnak will provide us with all that medical literature of well conducted studies that show the MMR vaccine causes enough injury allow us to let measles, mumps and rubella to return (just like what has happened in Europe and Japan).

Do share that data. Thank you.

Oh, and since my son was injured from an actual disease before the vaccine became available, perhaps you might address this question: If you find a gene that makes a child more sensitive to vaccines, would that not make them even more vulnerable to the actual disease?

It is all about relative risk. While many do not understand biochemistry, I wonder how well you understand statistics and the mathematics of epidemiology.

@ Chris: I have some concerns about Professor Jurnak's research skills and her understanding of providing Vitamin A to children who are Vitamin A deficient, in developing countries.

This is her latest statement...

"In reading the vaccine literature, there is a major theme that pops up time and again. Vaccines cause more harm to malnourished populations, particularly in under-developed sections of Africa. This provides a tentative link between vaccine harm and nutritional deficiencies, raising the possibility that some vaccines cause harm by inducing nutrient deficiencies in an already malnourished population. The strongest evidence for such a link is between the rubella virus and a deficiency in vitamin A. It is astounding but the claims in peer-reviewed medical articles are that one dose of vitamin A at birth can decrease the 5-year morbidity rate by 50% in these populations by mostly decreasing deaths caused by rubella infections. I won’t even attempt to summarize all the reports, but there is a clear link between rubella and vitamin A. It scares me to think that a rubella vaccination might be, in some way be hijacking some aspect of the retinol or retinoic acid transport system, inducing a vitamin A deficiency, which in turn would impair many processes in the immune system."

Wouldn't you think that a biochemist who has read thousands of articles about immunology and vaccine-preventable diseases during the past 15 years, would know the difference between rubella virus and rubeola virus?

http://www.who.int/mediacentre/factsheets/fs286/en/

If nothing is done and if “powers to be” insist that all children be vaccinated, some will die and this is equivalent to a genetic cleansing of the population not able to withstand the harmful effects that vaccinations can cause.

I guess that takes care of that.

I am disturbed that Prof. Jurnak who actually does real research decided to share with us this tidbit:

Although many will think that malnourished children do not exist in the US, reading of the nutritional literature suggests otherwise. There are subsets of US children who are deficient in one or more nutrients due to poor diets, genetic mutations, stress, infections of all types (parasitic, viral, bacterial, etc.) and/or the administration of certain kinds of medications.

But failed to provide any supporting scientific evidence for this claim.

Narad, the illogical part of what you quote is that the children who cannot deal with vaccines for some reason would be okay dokay with the actual diseases. So a kid is affect adversely by the MMR vaccine, does that mean they will not suffer from actually from mumps or measles. The same goes for Haemophilus influenzae Type b: why would a child deal better by actually it instead of the Hib vaccine?

It boggles the mind. What special genetic proclivity makes a child more vulnerable to the vaccine, but not affected by the full disease?

I don't think she has had the discussions with a genetics specialist that I have had, despite her respect for them. And, yes, the geneticist would have loved for us to pay for a full panel on our son because of both his neurological and cardiology issues. Did Prof. Jurnak pay the full $10,000 for a full screen? We did not. (insurance only covered the search for the eighteen known gene sequences, none of which our son had... but he still has HCM) Though we would gladly let more of his blood be used when they got a grant to study the subset of patients with my son's multiple issues.

Bad grammar alert: "does that mean they will not suffer from actually getting mumps or measles?</b?"

And I screwed up the HTML... nighty night.

Narad, the illogical part of what you quote is that the children who cannot deal with vaccines for some reason would be okay dokay with the actual diseases.

I take it that the idea is that disease is natural "genetic cleansing," whereas vaccines are Shoah.

@ Chris: Professor Jurnak claims her son has porphyria that she claims is treatable with supplementation with zinc and Vitamin B 6. She also claims that she cannot generate any interest within the research academia community to test her hypotheses about treating porphyria.

Up thread, I linked to the NIH Rare Disease Network-Porphyria Consortium and the regional clinical centers that are involved in research into the various forms of porphyria.

Wouldn't you think that Professor Janrek who works at University of California-Irvine would be aware of the Porphyria Consortium Regional Clinical Center located at the University of California-San Francisco? They have five open research projects that her son could be enrolled in and Dr. Janrek could work with the staff there to design a research study to test her hypothesis about zinc and Vitamin B 6 during acute attacks of porphyria.

http://rarediseasesnetwork.epi.usf.edu/porphyrias/centers/ucsf.htm

I will agree with Dr. Jurnak on this point, though:

There is a war between two opposing views about vaccinations– vaccinate all children for the good of the common, no matter what the cost or the harm to any single individual.

The "war," however, has been started yet again by the usual antivax types. Just this evening, in a discussion regarding a certain hockey team's first regulation loss, things eventually turned into a discussion with a fellow, starting a family in short order, whose wife is concerned about newer vaccines. Like Hib. My "combat" "tactics" were to say "hell, yes" and to offer to provide all the relevant data that I could dig up if so wished. Brutal, I know. Cue The End.

@lillady - thanks so much. (I have to admit I'll struggle to find time to read it, I've a huge pile of research papers I'd like to get through. I need the time device Professor McGonagall gave Hermione! :-) )

You're welcome Grant. Come back and post if and when you want to give us your impression of Prof. Jurnak's Mauve Factor paper Part 1 and 2. Don't expert her to reply, however. I believe after posting her fact free/citation free comment she announce her flounce...

"After discussions with Orec, I have decided that there are more germane venues for my son’s story. However, because I was the one to initiate some suggestions about vaccines by responding to a letter on this blog, I will share with you, space permitting, a fraction of the information available to me, in hopes that some of my ideas may give you a fresh perspective on very ingrained dogmas. Read it if you want, ignore it if you want, or use it if you are in a situation where the information may be useful. This will be my last posting on this blog site."

Narad, there is another more sinister look at her quote:

There is a war between two opposing views about vaccinations– vaccinate all children for the good of the common, no matter what the cost or the harm to any single individual.

Then add that to her comment in the WSJ:

Moreover, beyond the popular press articles about autism and the MMR vaccine, the authors demonstrate no familiarity with the extensive medical literature which reports harm, even death, caused by vaccines, albeit in rare occurrences.

To which, the obvious conclusion is that she and her friends wish to make vaccines voluntary for those who question them, just like what happened in Japan. It seems she has no idea what happened after they made measles vaccination voluntary: Measles vaccine coverage and factors related to uncompleted vaccination among 18-month-old and 36-month-old children in Kyoto, Japan:

In Japan, measles vaccine coverage has remained low, and either small or moderate outbreaks have occurred repeatedly in communities. According to an infectious disease surveillance (2000), total measles cases were estimated to be from 180,000 to 210,000, and total deaths were estimated to be 88 [11,12]. Measles cases are most frequently observed among non-immunized children, particularly between 12 to 24 months.

How many children will be sacrificed for her and her friends views if they succeed in reducing herd immunity to measles?

Porphyria is something I know a bit about. Acute intermittent porphyria is one of those conditions with a variable course that might have been designed to lead patients (and their parents), through regression toward the mean, to believe an intervention, whether diet, drugs or supplements is effective. When Prof. Jurnak writes, " I recognized that he was in a state of severe B6 and zinc deficiency, so I knew what to do and pulled him out of it over the course of a week", that strongly suggests to me that she has fallen prey to this kind of self-deception, since acute attacks of AIP last a week or two without treatment.

By Krebiozen (not verified) on 09 Mar 2013 #permalink

What also concerns me is the view that "ALL children MUST be vaccinated" that she believes we hold. How many times to we have to stress that we *KNOW* that there are infants/children/adults who cannot be vaccinated for one reason or another, and that is why we stress that all people who CAN be vaccinated, SHOULD be vaccinated, to protect those who can't be.

It's really annoying to deal with their willful black/white view of the world, when it contains so many shades of grey.

Hi lillady -

Started a reply, but my browser crashed and lost it. Bottom line for me, I guess, is that she'd really want to write it up as a hypothesis paper in a decent peer-reviewed journal with supporting references, etc., explaining her case. A presentation like the one above would have us (well, me anyway) second-guessing things, tracking things down and trying hopefully to put them into the picture, wondering if that's what she meant, rather than having what she meant presented to us.

There are some things she's written that don't "fit" to me (e.g. her remarks about complex genetics) - might point some of them out later, but I have to admit I'm not sure of the value doing that. By the way, there are a few papers pointing at a link between vitamin A and rubella. (I'm not seeing the large number of reports she infers.) I had similar concerns to Krebiozen over intermittent porphyria (specifics on the genetics and diagnosis, etc. might have helped). There's more but enough from me and besides I'd rather get on with my day :-)

Well Dangerous Bacon @ #69 *started* this entire controversy about Prof. Jurnak, with a well-reasoned reply that he posted, to her Letter to the Editor on the WSJ op-ed piece "Rolling Back The War on Vaccines". (February 14, 2013)

(I don't have "Flip's" ability to properly document Prof. Jurnak's RI's posts...but here are the salient points I've taken from those posts)

Prof Jurnak's first comment @ 275 on February 26th, where she states her opinion that the harm inflicted by vaccines are vastly under-reported and her son and others were seriously harmed by the first...and "booster" hepatitis B vaccine. She claims that "simple cost-effective" solutions are available, because she *knows* her son's "genetic make-up" and he was successfully immunized without harmful side effects "before he went to medical school".

And this...

"The bad reactions were never reported to the CDC by the physicians. I scoured the medical literature to figure out why and what could be done. By using science as the guide as well as information about my son’s own genetic make-up, I was able to mitigate his risks and have him safely vaccinated with the second hepatitis booster as well as with a number of subsequent vaccinations needed before he went to medical school. I believe that my solution might work well for many others but I have met a wall of resistance in discussing it with anyone in the medical community, in part, because physicians lack the extensive biochemical training and experience that I have".

Prof Jurnak replied to questions about those nebulous "cost-effect solutions" @ 277:

"I meant ever word – simple and low cost, but I would need an entire blog or two to explain. Otherwise my words would be misconstrued and misapplied by many."

Dr. Jurnak then states @ 288:

"I have to leave for a meeting, but if I am allowed to post a lengthy post by the moderators, I am sure that I can satisfy all of your concerns. The moderators should let me know.
I do mean serious adverse reactions, not just minor harm. As for the approach, it relies upon giving selective vitamins/minerals, depending upon the type of vaccine, for a week prior and after the vaccine. Also, not all children are at risk, but I do believe that with a few simple studies, a subset of children can be identified as having the potential for risk. One such group would likely include those babies who experience severe jaundice or elevated bilirubin problems at birth."

(Crap, I did not take her on about newborn jaundice that is not treated, which increases the risk of a child to have developmental delays...including ASDs)

Dr. Jurnak's fourth and final post, @ # 302, February 26...informing us of her credentials and her *expertise*:

"I am one and the same Jurnak. I am an excellent scientist with a solid international reputation in the field of macromolecular structure and biochemistry. However, my best scientific work is unpublished, involving how I treated and cured my son, when the traditional medical establishment gave up on him. Using my knowledge, I have helped many others, so I know that my son’s story is not just a rare, lucky anecdotal cure".

(Fade out)

Dr. Jurnak returned to RI on March 8th to post a rather lengthy citationless post where she details her son's "Acute Intermittent Porphyria" (up thread she stated that she *knew* her son's "genetic make-up") and how she *treated* his diagnosed Acute Intermittent Porphyria attacks associated with vaccinations...and the hepatitis B vaccine in particular:

"When California declared that all school children needed the hepatitis B vaccine, I got him vaccinated. As circumstances would have it, I was due to speak at a scientific meeting in Europe, so I left shortly after his vaccination. I left my son in the care of my husband as well as two special caregivers who were quite knowledgeable about his many neurological problems. Within a day, I received a phone message from one of the caregivers, telling me that my son was having a severe attack and that I should come home. I left immediately and when I arrived home, I recognized that he was in a state of severe B6 and zinc deficiency, so I knew what to do and pulled him out of it over the course of a week".

Whoa....

Prof. Jurnak stated up thread that her son needed hepatitis B vaccine (and a "booster" hepatitis B vaccine) "before he went to medical school". Now she is claiming that her son was a "school-aged" child who was so neurologically impaired that when she left for a business trip to Europe (that) "I left my son in the care of my husband as well as two special caregivers who were quite knowledgeable about his many neurological problems".

IMO, Prof. Jurnak is a classic case of an anti-vaccine mommy who cannot get her *stories* straight, when called out to put or shut up with citations for her bogus theories.

There are a lot of inconsistencies in Prof. Jurnak's posts and I have become (somewhat) well versed in the porphyria conditions, through research at the NIH Rare Diseases Network-Porphyria Collaboration, which I referenced up thread.

Since Prof. Jurnak's first post on February 14th, I educated myself about vitamin B-6 and Zinc supplements for "treating" Acute Intermittent Porphyria at this site (nary a mention of do-it-yourself-at-home Vitamin B 6 and Zinc megadoses).

http://www.porphyriafoundation.com/for-healthcare-professionals/emergen…

So yes, I'm call bullsh!t on each and every one of Dr. Jurnak's posts.

@Lilady

I don’t have “Flip’s” ability to properly document Prof. Jurnak’s RI’s posts…but here are the salient points I’ve taken from those posts

What are you trying to do?

@ flip: Show Prof. Jurnak's inconsistencies...not too successfully, sigh.

Personally, I just wanted her to show us what were those genetic sequences. But it seems that she never even attempted to get a scan of her son's genes.

Plus, she ignored kids who actually need to be protected by herd immunity.

@ Chris: Let's not *complain*. Dr. Jurnak's citationless and fact-free posts, gave us the opportunity to question her silly and dangerous theories about vaccines.

Up thread, she stated she didn't know how her comments would be received here. Apparently, she was unaware that she was posting on a site where we want some proof for her statements about the dangers of vaccines, the under-reporting of serious adverse events/deaths caused by vaccines and her "cost-effective (vitamin/mineral supplements) to prevent/treat those numerous serious adverse events, associated with vaccines".

Is she actually giving out medical advice? That doesn't bode well for her.

BTW, when my son was young, I had "two special caregivers who were quite knowledgeable about his many neurological problems", but he never "went to medical school".//sarcasm.

@Lilady

@ flip: Show Prof. Jurnak’s inconsistencies…not too successfully, sigh.

Are you kidding me? I am incredibly jealous of everyone here who is 10 times smarter, eloquent and well, knowledgeable.

I thought you were talking about some sort of technical thing like linking to comments...

Thank you for the (undeserved) compliments :)

flip...I've made (huge) strides during the two plus years I've been posting here...ask "Chris" who used to "link" for me.

You really do have a great talent for organizing the comments/walls of words posted by some of the individuals who spam threads on RI.

Don't ever sell yourself short...you are a valued member of our community.

I was looking for vaccine info and stumbled upon this site. Amusing read, but really do some of the regular posters realize how ridiculous they sound? They want to appear critical, but really don't support their criticisms with citations as they demand of others. In their haste to criticize, they misread posts they don't like. Lilady has been all over Prof. Jurnak for any number of reasons, but the poster seems to have misread the posts or didn't understand them. E.g. PJ never claimed her son had Acute Intermittent Porphyria, only attacks that were "consistent with a disorder porphyria", but went on to explain how deficiencies in certain nutrients could mimic the disorder. PJ did not claim that AIP (genetic form) could be treated with vitamins or minerals and thus it is pointless to suggest that a porphyria foundation would support such research.

PJ seemed to make a reasonable, low cost (~$1- $5) suggestion that vitamins shortly before and after vaccination might avoid some harm in children at risk. She failed to provide citations, only a rationale, for her suggestions. Really, if the posters object so much to the suggestion, they should provide citations demonstrating that such an approach would definitively harm children, rather than attempt to criticize what appears to be their own misreading of parts of the PJ posts. If this blog site wants to gain credibility with readers, then posters need to do a better job of monitoring one another.

Here are some citations about the vitamin approach to vaccinations:

orthomolecular.org/resources/omns/v08n07.shtml and 15 references therein:

"Vitamin C prevents vaccination side effects; increases effectiveness" by T.E. Levy, MD

Horrors - the article is written by an orthomolecular physician so according to most posters it must be immediately discounted. Open your minds, people, or at least provide relevant citations to refute the article!

CS Benn. Dan. Med. J, 2012, Jan; 59(1): B4378 "Combining vitamin A and vaccines: convenience or conflict" and references therein.

Author seems to conclude that vitamin A supplementation can help or hurt, depending on gender and/or vaccine type. More study needs to be done.

Thanks Lilady. I do feel part of the community, but very much a baby in terms of dealing with anti-science claims.

I'm still not sure what you mean by organising comments, but my technique is always copying the comment into a notepad file and then replying to bits here and there if I have a remark to add; then copying that into the comment box. Maybe you mean the formatting using blockquote?

Oh and for some fun, I just found this. A home birther of an unusual kind... Those on facebook should really go over and comment.

drw:

Amusing read, but really do some of the regular posters realize how ridiculous they sound? They want to appear critical, but really don’t support their criticisms with citations as they demand of others

I have had a genetic screen on my son, so I know they are not magic. I even listed some of the sequences. Prof. Jurnak did not do the same.

I also asked her to compare the risks of the MMR to measles with evidence based on her comment to the WSJ article. I did provide a citation to what happened in Japan, where toddlers got measles and several died. Did you miss that?

I have more citations, would you like to see them? Here, knock yourself out:

Vaccine. 2012 Jun 13;30(28):4292-8. Epub 2012 Apr 20.
The combined measles, mumps, and rubella vaccines and the total number of vaccines are not associated with development of autism spectrum disorder: The first case-control study in Asia.

Vaccine. 2012 Jan 5;30(2):247-53.
Lack of association between childhood immunizations and encephalitis in California, 1998-2008.

Pediatrics Vol. 126 No. 2 August 1, 2010 (doi: 10.1542/peds.2009-1496)
Lack of Association Between Acellular Pertussis Vaccine and Seizures in Early Childhood

BMC Public Health. 2011 May 19;11:340.
Congenital rubella syndrome and autism spectrum disorder prevented by rubella vaccination--United States, 2001-2010.

Pediatrics. 2010 Jun;125(6):1134-41.
On-time vaccine receipt in the first year does not adversely affect neuropsychological outcomes.

Pediatr Infect Dis J. 2010 May;29(5):397-400.
Lack of association between measles-mumps-rubella vaccination and autism in children: a case-control study.

Pediatrics. 2009 Jun;123(6):1446-51.
Parental refusal of pertussis vaccination is associated with an increased risk of pertussis infection in children.

Pediatrics, February 2009, Vol. 123(2):475-82
Neuropsychological Performance 10 years after Immunization in Infancy with Thimerosal-Containing Vaccines

Okay, drw, I looked at both of your cites.

The first on from the orthomolecular physician is interesting, except the citations were the effect on poultry, pigs, fish, etc. Not terribly enlightening.

The second citation is specifically to vitamin supplementation for children in Ghana, which a vastly different demographic than North America and Europe. There really is not much in the way of starvation and malnutrition in North America and Europe.

Prof. Jurnak also failed to support her claim that there was malnutrition in the USA with a valid citation.

@drw: How amusing. I just love your link to a crank organization that has bogus orthomolecular medicine advice about megadoses of vitamins as cure-all for diseases and disorders.

http://en.wikipedia.org/wiki/Orthomolecular_medicine

How about looking at the many links I provided with reliable information?

Why didn't Prof. Jurnak pony up any citations about her child's genetic disorder? Was he ever seen by a geneticist, who ordered a karyotype and other genetic testing to confirm any type of porphyria?

Where are your citations from reliable medical/science journals? The studies on that website are studies of mercury toxicities in livestock, not lab animals. Do you actually know the difference between an organomercury compound (Thimerosal), Inorganic mercury, and elemental Hg?

Here, from the National Academies of Science, Institute of Medicine, a synopsis of the January 2013 Report On Vaccine Safety:

http://www8.nationalacademies.org/onpinews/newsitem.aspx?RecordID=13563

drw@339

Open your minds, people, or at least provide relevant citations to refute the article!

Which article are we supposed to refute?
The entire website you didn't link to, the article by T.E. Levy you didn't actually cite, or the following one you did cite: Dan Med J?
If you want us to refute something, could you please let
us know what that is first? Give us both the reference, and a summary of what you think it says?

We can't refute anything Prof Jurnak posted, since that's all personal anecdote - no references.

Open your minds, people, or at least provide relevant citations to refute the article!

CS Benn. Dan. Med. J, 2012, Jan; 59(1): B4378 “Combining vitamin A and vaccines: convenience or conflict” and references therein.

Oh, look, it's Guinea-Bissau again.

Horrors – the article is written by an orthomolecular physician so according to most posters it must be immediately discounted.

This is a press release, not a "citation."

Dr. Thomas E. Levy is a board certified cardiologist and he has written six books on health-related issues. Most of his work has centered on how to restore and/or maintain good health in the face of the many different forms of toxicity that all of us face, typically on a daily basis. He no longer has a clinical practice of medicine and cardiology. Rather, he limits himself to research and writing at this time, and he is currently working on his seventh book, Death by Calcium: The Supplement that Kills.

Not clicking drw's link (since it's probsbly full of woo), but I take it he's probably not talking about what those of us with half a brain think of as "vaccine side effects" - a sore arm and possibly achy muscles/slight fever as the immune system kicks in. In this case, sucking on a vitamin C drop beforehand couldn't hurt (and tastes good, too).

So yes, I’m call bullsh!t on each and every one of Dr. Jurnak’s posts.
Typical LL. Prof J, a published researcher with a UC Berkley PhD, represented an opportunity to engage to see how she arrived at her views. J sounds relieved that her son went to medical school, without arriving in a can of phenolics or HCHO, apparently a 1-2 decade story.

Instead of engagement, Prof J gets the bums rush and pile-on before she even has an inkling about the "rules" here. LL is probably qualified to disinfect the floor at J's lab but just keeps cranking out the attacks. Too bad.

drw,

E.g. PJ never claimed her son had Acute Intermittent Porphyria, only attacks that were “consistent with a disorder porphyria”, but went on to explain how deficiencies in certain nutrients could mimic the disorder.

She claimed that her son's symptoms were an unknown form of porphyria caused by nutrient deficiencies, but it seems very much more likely that he has a genetic form of porphyria. Why would her son suffer from periodic attacks of nutrient deficiency? Was she periodically failing to feed him properly?

There is a condition called acrodermatitis enteropathica that is a congenital inability to absorb zinc properly but it is not characterized by episodes, just a slow deterioration that can eventually result in death if left untreated. I don't buy her "nutrient deficiency" hypothesis.

My main point above was that any condition that has a course characterized by attacks punctuated by periods of good health, "waxing and waning episodes" as Prof. Jurnak described her son's symptoms, can very easily mislead people into thinking they have discovered an effective treatment for it. That's what makes conditions like MS and Crohn's such fertile ground for quack treatments. People tend to try a remedy when their symptoms are at their worst, and when their condition improves, as it inevitably will at some point, it is easy to attribute the improvement to the remedy. If this scenario is repeated a couple of times you may have someone who is utterly convinced that the remedy is effective. It's one way our brains mislead us.

By Krebiozen (not verified) on 11 Mar 2013 #permalink

Here's what puzzles me about Professor Jurnak's story:

I had him vaccinated. Within hours, he had another attack, earmarked by his characteristic symptoms of B6 and zinc deficiency.

This appears to imply that the mere exposure to "the hepatitis capsid protein" can drain B6 and zinc out of the body in a matter of hours.  How does that work, exactly?  To me it sounds like the "instant scurvy" others have claimed is caused by vaccination, when trying to explain broken and half-healed bones in Shaken Baby Syndrome, and is just as implausible.

@prn: we gave Prof Jurnack the ability to respond. However, as you know, we prefer peer-reviewed literature. AND we prefer stories that don't change midstream (her son was so neurologicially injured he required several trained caregivers VS her son was so brilliant that in time his vaccines were caught up before he went to medical school). Or does she have 2 sons? She is unclear; a poor method of writing for a researcher.

And, again. Why has she not documented her treatments? Even just writing about them as a case study would help others replicate her work, instead of the handwaving "I'm so busy, I can't write about my wonder cure for my child".

And WHY would any parent not want to have her child tested for a disorder, in order to be more aware of issues? I'd go through hell for one of my kids, but I'd make sure I had as much information as possible. Maybe, like Chris' son, the answers wouldn't be there, but I'd sure look for them!!!!

prn, Prof. Jurkak made several claims that she failed to provide any evidence of. I mentioned many. Why is it a bad thing to demand actual evidence for assurances made in a comment?

Do you have the literature to show that children in the North America and Europe are malnourished? Hint: do not provide a paper about children in Ghana.

@prn: Prof. Jurnak had ample opportunity to understand how this blog...and every other science blog "works". When you make an extraordinary statement about malnutrition prevalence and her as yet unpublished n=1 case study of her son...you'd better have your facts straight. To date, Jurnak offers two stories about the onset of her son's disorder...

- He was school aged, quite neurologically impaired, requiring two caregivers...or...he was on his way to medical school...when he required the hepatitis B vaccine series.

-She "knew" her child's "genetic make-up"...yet apparently never had a consultation with a geneticist and had genetic tests performed on her school-aged child (or medical school- aged child).

- She *claims* she has done research on vaccines, hepatitis B vaccine especially, yet referred to the second hepatitis B vaccine in the vaccine series as a "booster shot".

-She confuses the rubella virus and rubeola virus.

-She claims that her *research* has determined that megadoses of Vitamin B 6 and Zinc are required for anyone diagnosed with any of the porphyrias...they aren't in the absence of any vitamin B6 or Zinc deficiencies.

-She claims that vaccines in general and the hepatitis B vaccine in particular trigger porphyria attacks...they don't.

-She provided zero links to any of the "thousands of research papers that she has read over the past 15 years". I provided two links to reputable websites about the porphyrias.

-She didn't even provide the links to the two papers that she authored and that were published in an Alt/CAM journal. I provided the links to her two papers "Mauve Factor 1" and "Mauve Factor 2".

You stated this about Jurnak and about me, prn:

"Instead of engagement, Prof J gets the bums rush and pile-on before she even has an inkling about the “rules” here. LL is probably qualified to disinfect the floor at J’s lab but just keeps cranking out the attacks. Too bad."

Jurnak had no intention of "engaging", because when she returned to the blog after a ten day absence with a citationless post, she stated she wouldn't be posting again.

I've never claimed any expertise in genetics and you prn are well aware of my education, my credentials and my work experience. Keep it classy prn...or else I'll wipe the floor with you...once again.

So yes, I’m calling bullsh!t on each and every one of Prof. Jurnak’s posts.

My guess is that prn's just annoyed because Jurnak suggests vitamins might be the answer. Prn seems to be sensitive whenever vitamins are mentioned.

You show many prejudgments here, completely wrong again. Like on Prof J's publication record with first tier pubs.

or else I’ll wipe the floor with you…once again.
Your memory is different than mine. You have puked on me, harangued and stalked me many times, to the point I felt the need to disconnect to break the cycleyou melted down here

LL: ….when you were spouted your nonsense …, I located an old (1938) paper from Japan about one of your favorite non-traditional drugs or magavitamins? I cannot locate that thread prn…
prn:
Google and I don’t recall such a notably unusual reference either, perhaps you’ve confused intent to write or with someone else. Or perhaps an interesting combination of ad hominem and confabulation.….when you were spouted your nonsense …, I located an old (1938) paper from Japan about one of your favorite non-traditional drugs or magavitamins? I cannot locate that thread prn…
Google and I don’t recall such a notably unusual reference either, perhaps you’ve confused intent to write or with someone else. Or perhaps an interesting combination of ad hominem and confabulation.

You are delusional about your "mopping the floor" with me as with many factoids. I am still waiting for that 1938 Japanese vitamin reference that you claimed you showed us before, but had never, ever showed infact.

I think my points stick. You simply have a strong need to dominate by shouting people down, LL.

I am still waiting for that 1938 Japanese vitamin reference that you claimed you showed us before, but had never, ever showed infact.

Are we talking about the Otani pertussis stuff again? I had to lie down. It was 1936, as I recall.

@prn: Thanks so much for linking to Orac's post last year :-)

There's no need for me now, "to wipe the floor with you...again"...
Res Ipsa Loquitar.

Personally I'd ignore prn's blatant trolling.

His "argument from authority" approach doesn't work anyway. As I wrote earlier (#307),

"... very fine scientists can propose weak or even dubious ideas, too. It’s one of the reasons, I think, that proposals ideally are best to stand on their own merits rather than previous record or “authority”, just in case it’s a case of a good scientist’s lesser ideas."

(The term "lesser ideas" is science's very polite way of saying "simply wrong" - !)

Some very fine scientists have put out some bad ideas, even some that were immediately seen as wrong by others.

Looking at it in the best light I can (i.e. giving her the benefit of doubt, etc.), one obvious problem with Jurnak's post is simply that being offered in piecemeal fashion (there are "bits", but they haven't really been linked to one-another) and without citations she has not actually argued her case but rather presented a sketch "gloss", leaving others to somehow fill in the blanks, to second-guess what she would have there. As I suggested earlier for anyone to want to take it seriously she really would need to argue her idea properly -- as a hypothesis article in a decent peer-reviewed journal. That won't make her idea "right", but at least it might then have enough detail (& supporting citations, etc.) for people to try engage with it.

prn:

You show many prejudgments here, completely wrong again. Like on Prof J’s publication record with first tier pubs.

So? Perhaps you have the supporting literature support this statement that American children are malnourished:

Although many will think that malnourished children do not exist in the US, reading of the nutritional literature suggests otherwise. There are subsets of US children who are deficient in one or more nutrients due to poor diets, genetic mutations, stress, infections of all types (parasitic, viral, bacterial, etc.) and/or the administration of certain kinds of medications.

Oops... the second blockquote is quoting Prof. Jurnak.

Lilady @353

- He was school aged, quite neurologically impaired, requiring two caregivers…or…he was on his way to medical school…when he required the hepatitis B vaccine series.

You are wrong on one thing here: Prof Jurnak’s son did not receive the hebB vaccine on his way to medical school. My interpretation is he received hebB as a school aged child in the late 1990s, when CA added it to the list required for school. That was at least 14 years ago, as the mandates went into effect in 1997 for elementary school and 1999 for middle school (http://www.immunize.org/laws/hepb.asp).
Her comment from #275 reads (my emphasis)

have him safely vaccinated with the second hepatitis booster as well as with a number of subsequent vaccinations needed before he went to medical school.

These are clearly separate events.
I’m not going to speculate about what level of neurological impairment he overcame to be able to enroll in medical school, but if he was in elementary school in 1997, the timing is possible.

@ Chemommo: I documented precisely what Prof. Jurnak stated in her many posts about her son's *reaction* to hepatitis B vaccine. California mandated hepatitis B vaccine for school aged children in 1997...and Jurnak stated her child had a reaction to the second hepatitis B vaccine (according to her, a "booster" vaccine), when he was a "school-aged" child...or was it in preparation for his entry into medical school?

OSHA Guidelines Do Not require that HCWs/medical school students MUST have proof of completing the hepatitis B primary series/proof of immunity/"boosting" of immunity against the hepatitis B virus. OSHA Guidelines state that HCWs should receive reliable information about transmission of the virus and have the hepatitis B vaccine provided to them free-of-charge:

http://www.osha.gov/OshDoc/data_BloodborneFacts/bbfact05.pdf

Here are the "Recommendations" for HCWs who will be exposed to accidental finger sticks...but HCWs and trainees are NOT required to prove immunity against the hepatitis B virus:

http://www.cdc.gov/mmwr/preview/mmwrhtml/rr6007a1.htm

@lilady - I never thought the story made any sense, since the age of the child seemed to be variable, depending on the version of the "same" story told.

lilady (and Lawrence), I agree that the timeline is difficult to follow, especially as it’s spread out over several posts, and it’s not particularly clear what happened when. I’ve looked back through what she posted, and I’ve come to the conclusion that the confusion is ours, not hers. We are so used to folks getting upset over the birth dose of hepB that we overlooked the part of Prof Jurnak’s posts which describes him as an adolescent (#312 -don’t know if the link will work):

During his adolescent years, my son experienced waxing and waning episodes consistent with a disorder called porphyria. . . . I realized early on that the attacks were highly correlated with his states of deficiencies in B6 and zinc, as demonstrated by clinical testing.

After describing her rationale for the vitamins, she follows up with the statement:

When California declared that all school children needed the hepatitis B vaccine, I got him vaccinated.

If the child is already an adolescent, we can conclude this was the 1999 mandate for middle schoolers.

And he certainly could have enrolled in medical school by now, and if he had, he probably had to get caught up on any missing vaccinations – those subsequent ones from Prof Jurnak # 275 which I quoted previously (I’ll save that link for a separate post to avoid moderation). Again, her writing is quite clear that the hepB vaccination and boosters occurred earlier, and he had other vaccinations later.
It is lilady, not Prof Jurnak, who added the description “school age,” suggesting a relatively young child. If we assume the boy was young when he received the hepB, the story makes a lot less sense than it does in light of the fact he was already an adolescent. Jurnak’s actual wording is “school children” – and what else are you going to call them? She’s referring to the change in immunization law, which extended HepB coverage to all of them.

As for the multiple care givers – I’m guessing they weren’t all attending the child at once, and she only mentioned them for the sake of accuracy since the phone call did not come from her husband.

lilady, I respect you a lot and enjoy reading your posts both here and elsewhere and I hope you don’t take this the wrong way. We need to make sure that we are accurate in our criticism – it does not do any good to criticize someone for something that they never did claim, or accuse someone of being inconsistent when we have misinterpreted their words.

Thanks Chemmomo: According to PKIDs, mandatory hepatitis B series requirement for California elementary school was 1997 and mandatory for middle school 1999.

http://www.immunize.org/laws/hepb.asp

Prof Jurnak refers to the 2nd hepatitis B vaccine in the primary series as "a booster"...not so.

I don't know when her child received the Hepatitis B primary series, because of her utterly confusing posts...do you?

She purportedly is an *expert* in porphyria disorders, because of her extensive research and because she "knows her son's genetic make-up". She jabbers on about the genetics associated with the various types of porphyria, her *expertise* in Vitamin B 6 and Zinc deficiencies present in children and adolescents in the developed world and her *expertise* in the need to provide mega doses of Vitamin B 6 and Zinc to children who do not have deficiencies and who have been diagnosed with types of porphryia...again, not so.

She *confuses* rubella and rubeola...knows diddly squat about physiological jaundice in the newborn... yet Jurnak who is not a medical doctor, brags that she provides medical/nutrition advice over the internet.

So....where oh where, are any citations about those deficiencies in the general population and the need to provide Vitamin B6 and Zinc mega doses to kids, adolescents and adults who have any type of porphyria...in the absence of a diagnosed deficient state?

lilady, I linked to the same page on Immunization law back at #361.

the 2nd hepatitis B vaccine in the primary series as “a booster”…not so.

Then what is it called? As a regular parent, I thought that any later dose of the same vaccine given a later date was a booster. Does a “booster” have to be years later? If so, I’m guilty of the same mistake. And really - what should it be called?

I cut and pasted all of Prof Jurnak’s posts into one document before I re-read them. That clarified the story for me, as I related in my earlier comment #364. I don’t know for sure when her son received the hepB series, but her story suggests it was in 1999, as she had previously described him as an adolescent, and that is when the law mandated it for someone that age.

I do agree there’s a lot of information missing from her story, particularly references, and some parts of her final posts raise more questions than they answer. But Prof Jurnak decided that the comments section of this blog post was not the venue for her to do that, and I agree with her on that. I’m with Grant: it would be great if she did write the whole thing up for publication, with all the references. Unless that happens, we're not likely to get any more answers.

One more point regarding the boosters/not boosters
lilady wrote:

the 2nd hepatitis B vaccine in the primary series as “a booster”…not so.

Prof Jurnak wrote #275

have him safely vaccinated with the second hepatitis booster

This is after she has already mentioned he had a bad reaction to the first and second shot in the series – the immunization in question is here is actually the third of the series. And I probably would call that the “second booster,” too, using “booster” to distinguish it from the very first one.

@ Chemmomo:

"Then what is it called? As a regular parent, I thought that any later dose of the same vaccine given a later date was a booster. Does a “booster” have to be years later? If so, I’m guilty of the same mistake. And really – what should it be called?"

With Hepatitis B...."It" is called # 1 or # 2 or # 3 dose of the 3-dose series.

Td and the newer Tdap vaccines are "booster" vaccines, given after the early 5-dose series a.k.a. primary series.

https://www.oag.state.tx.us/consumer/med_professionals.shtml

lilady,
Thanks! I'll stop calling the later shots in the first series boosters now. Dose, not booster.

Think we're missing the forrest for the trees here. I'm really not that interested in clearing up the details of Jurnak's accounts of her son's immunization, supposed vacine injury, recovery and enrollment in med school, etc. All doing so could accomplish, after all, is to make a personal anecdote account self-consistent. It can't raise its status from anecdote to evidence arguing against routine immunization.

LL: It's "Res Ipsa Loquitur"
Yes, it does speak for itself, like when you had made enough of a fool of yourself in front of everyone here, your legal threats started. e.g. might want to talk to your ...attorney
Now you rewrite history and pronounce a self congratulatory Victory. ha.

Narad@356 Thanks, Otani(1936) appears to have been introduced by someone else at the other blog. Otani was not megadose vitamin C by modern CAM lights.

Grant@358: Re:LL I wasn't trolling and I didn't make a technical claim that rested on authority. LL was far beyond civility in ad hominem attack mode again, based on her misinterpretations and misconstruction, as has been common with her on CAM subjects that are legit biological disputes. I injected a small dose of reality on relative scientific accomplishment and qualifications with respect to Prof J. LL loves to dish it out, but often can't handle deflation on her rhetoric.

@prn

"Grant@358: Re:LL I wasn’t trolling and I didn’t make a technical claim that rested on authority. LL was far beyond civility in ad hominem attack mode"

Your comments to lillady have examples of both trolling and ad hominem. If you can't recognise that then perhaps you need to back off.

By way of example:

This is straight-out ad hominem: "LL is probably qualified to disinfect the floor at J’s lab […]" In addition to being besides the point it plays the "authority" card -- you're comparing Jurnak's credentials to an imaginary cleaner.

This is trolling: "[…] You simply have a strong need to dominate by shouting people down, LL." Putting in a "last word" at the end of a comment, evoking their name in a slur is trying to provoke, whatever else you might mean by it, and isn't a good sign ;-)

You rested F. Jurnak's involvement (and how she should be treated) on her credentials, rather than the substance (or not) of her argument - see my earlier comments.

As I wrote earlier, the kindest (giving the benefit of doubt) would be to point out there are too many "jumps" between FJ's points for anyone to know what her full argument is to engage with it properly. By way of example, I'm bothered by several things she wrote—these points don't look right to me and raise suspicions—but I also think pointing them out might be a bit meaningless as she's not going to clarify and in any event it would have us trying to fill in her argument rather than her arguing it to a standard that can be engaged with soundly.

@ JGC: I didn't expect Prof Jurnak to reply, because she already stated she would not comment again. Since she first posted here on February 14th, she has never provided a link to back up her statements about the *dangers* of vaccines, the *under reporting* of serious adverse events/deaths from those vaccines. her statements about vaccines triggering an acute intermittent attack of porphyria, her *recommendations* about mega doses of Vitamin B 6 and Zinc, her *observation* that American children suffer from a variety of vitamin and mineral deficiencies, and her n=1 anecdotal study about Vitamin B 6 and Zinc megadoses, that she *recommends* to other parents. Many posters here asked her to re-post with links to citations that support all her assertions. She chose to not provide any links to any citations.

I, OTOH, provided links to the NIH Rare Diseases Network-Porphyria Collaboration and to The Porphyria Foundation, for reliable information about the genetics, the laboratory tests that are considered the gold standard for diagnostic purposes and the nutritional aspects of the types of porphyrias, (well balanced diet and no vitamins/minerals supplements in the absence of laboratory-confirmed deficiencies). On this thread, I didn't delve into the veracity of her statements about vaccines...others on this thread posed pointed questions to Prof. Jurnak.

@ prn: Thanks for correcting my spelling. Instead of your personal attacks on me...why not comment on the subject of this thread, using links to any citations from Alt/CAM websites or *traditional sources* such as the CDC, the WHO or the American Dietetic Association?

C'mon prn, show us your stuff...else we might think you haven't grown out of school girl taunting stage.

I get a little flack because I do see a place for some vaccinations - but not for STDs like HepB and HPV years before a child should be in a position to contracts such things. or is our world such an evil place now? And one day old babies do not have a fully functioning immune system to stimulate with a hep B shot in any event. I'd like the European option of freshly made vaccines (no preservatives/formaldehyde/mercury required) more readily available. And I am still waiting on a properly run trial for human ingestion of fluorine or Genetically Modified crops. Somehow these things were passed without.

Heather,

Hepatitis B is not solely sexually transmitted. Among other ways, babies can be exposed during birth if their mothers are infected and exposure to blood or open sores from people who are infected.

The HPV vaccines need to be taken before being exposed to the virus, preferably before sexual activity. You may have heard that some young teens are participating in sexual activity, including oral sex, which can spread HPV. The vaccines are recommended at age 12.

Fluoridation adds the mineral fluoride (not the gas fluorine) to the water. This is a mineral which is found naturally present in some water supplies. There have been multiple studies of the safety of drinking fluoridated water. See http://www.cdc.gov/fluoridation/safety/systematic.htm for links to reviews of those studies.

By Mephistopheles… (not verified) on 29 Mar 2013 #permalink

I’d like the European option of freshly made vaccines (no preservatives/formaldehyde/mercury required) more readily available.

What on Earth gave you this idea? Freshly made? Have you even looked at package inserts for vaccines made in the EU?

By Science Mom (not verified) on 29 Mar 2013 #permalink

@Heather

To just tag on to what Mephistopheles O'Brien mentioned, the hepatitis B virus can survive and still be able to cause infections for up to seven days outside the body (e.g., if there are any infectious droplets of blood on a surface). It's incredibly easy to miss droplets like this, even when specifically looking for them. While sexual transmission is the most common means of getting hep B, the more likely means of an infant acquiring it (if their mother is not infected) is through ingestion or through a scrape, cut or bite. The younger you are when infected, the greater your risk of chronic infection leading to liver disease and cancer.

Heather,
I think you need to think a little more critically about some of the information you have come across.

And one day old babies do not have a fully functioning immune system to stimulate with a hep B shot in any event.

If that's the case, how is it that hepatitis B vaccine is so effective at preventing babies from contracting the disease from their mothers? Babies born to mothers with hepatitis B are 72% less likely to contract the disease if they are vaccinated immediately after birth.

I’d like the European option of freshly made vaccines (no preservatives/ formaldehyde/ mercury required) more readily available.

I live in Europe and this is news to me. The vaccines we get are mostly the same as those people get in Australia, and the US.

And I am still waiting on a properly run trial for human ingestion of fluorine

Nature has helpfully provided is with several natural experiments, since there are several places where drinking water contains as much or even very much more fluoride than is added in fluoridation. Fluoridation aims at 1 milligram of fluoride per liter of water, which we know from these natural experiments reduces dental caries without the side effects of higher amounts.

or Genetically Modified crops.

Do you really prefer your foods laced with the toxic pesticides and herbicides that GM crops are designed to reduce or even eliminate? In Europe neonicotinoid pesticides that are toxic to bees and other wildlife have been approved because of our reluctance to adopt GM crops that are pest resistant.

By Krebiozen (not verified) on 29 Mar 2013 #permalink

If you're concerned about eating genetically modified crops I'm wondering what your diet consists of. Humans have been genetically modifying crops (and livestock) for centuries. The only real change today is that we now have allowing us to do so in a much more controlled and precise manner than our previous techniques which relied heavily on selective crossing/controlled breeding methods

.

What on Earth gave you this idea? Freshly made?

Perhaps she meant "artisanal."

#377 Why shouldn't women be protected from STIs that in many cases men don't even know they have?

You do realize you can get a sexually-transmitted infection from a husband even if *you* never ever have sex with anyone else, ever, don't you?

Khani,

You do realize you can get a sexually-transmitted infection from a husband even if *you* never ever have sex with anyone else, ever, don’t you?

The reverse, naturally, is also true.

By Mephistopheles… (not verified) on 29 Mar 2013 #permalink

@ Todd W. Your link led me to the Medscape sign-in page, not the article you referred to. I have Medscape membership and will provide the paragraphs for the studies that show the difference between providing ONLY the hepatitis B vaccine at birth-versus-providing hepatitis B AND HBIG (Hepatitis B Immune Globulin), at birth, to newborns whose mothers are chronic hepatitis B carriers.

Liver International

Hepatitis B and Pregnancy: An Underestimated Issue

Maureen M. Jonas

Liver International. 2009;29(s1):133-139.

"Mode of delivery has been examined as a potential risk factor for HBV transmission. In a report from China in 1988, of 447 infants born to HBsAg-positive women, 24.9% (96/385) of newborns delivered vaginally were HBV infected at birth, compared with < 10% (6/62) delivered by caesarean section.[32] Both groups received HBV vaccine. These authors advised caesarean section delivery for mothers with high levels of viraemia. However, a later study compared outcomes among three groups: 144 infants born by spontaneous vaginal delivery, 40 by forceps or vacuum extraction and 117 by caesarean section.[33] All infants received the HBIG and HBV vaccine at the recommended schedule. Chronic HBV infection was detected in the infants in 7.3, 7.7 and 6.8%, respectively, and response rates to immunization were similar in all groups. The authors concluded that mode of delivery does not influence the likelihood of HBV transmission. At this point, most obstetrical algorithms do not include change in the planned mode of delivery for HBsAg-positive women regardless of HBeAg status or level of viraemia."

The next two paragraphs are a discussion of transmission rates of Hepatitis B exposed newborns in the United States, who received the hepatitis B vaccine AND HBIG (Hepatitis B Immune Globulin) at birth...

"In the USA, all pregnant women are supposed to be tested for HBsAg, regardless of assessed risk and previous testing. Neonates born to HBsAg-positive women should receive HBIG and vaccine before discharge[5] and be followed to determine the adequacy of immune response and the vaccine failures. All infants, regardless of maternal HBsAg status, should receive HBV vaccine in the first months of life. In Taiwan, all infants have been receiving the HBV vaccine for almost 20 years, with a significant impact on perinatal transmission and childhood and adolescent infection and its complications.[34,35] Whether universal immunization will be adopted in all European countries, as the World Health Organization has recommended, depends on many factors, such as perceived prevalence and risk, changing immigration patterns, cost–benefit analyses and budgetary priorities.

Immunoprophylaxis provided to newborns clearly reduces the incidence of perinatal HBV transmission. In a recent meta-analysis of clinical trials,[36] the relative risk of neonatal HBV infection in those who received HBV vaccine (plasma-derived or recombinant) was 0.28 [95% confidence interval (CI) 0.2–0.4] compared with those who received placebo or no intervention. Compared with vaccine alone, the addition of HBIG to the regimen further reduced the relative risk (0.54, 95% CI 0.41–0.73) when compared with active prophylaxis only. Nonetheless, there are clearly a substantial number of newborn infections, even with prompt administration of active and passive vaccination. The estimates vary, and depend on maternal HBeAg status, but most studies demonstrate anywhere from 1%[37] to 10%[36] chronic HBV infection in infants who were appropriately immunized. Clearly, with millions of at-risk pregnancies each year throughout the world, significant numbers of perinatally acquired chronic HBV infection are still occurring."

When I retired from the health department our Perinatal Hepatitis B Prevention Program staff had case-managed more than 900 deliveries. Only three babies who received who received the birth dose of the vaccine AND HBIG within 12 hours of birth, became infected with the hepatitis B virus; a failure rate of 0.003 %.

Perhaps she meant “artisanal.”

snort
Somehow I don't see "vaccine-maker" listed as a recognised artisan.

By Science Mom (not verified) on 29 Mar 2013 #permalink

"but not for STDs like HepB and HPV years before a child should be in a position to contracts such things. or is our world such an evil place now? "

I've honestly never understood this sentiment. Is it not better to reduce risk wherever possible by any means available? Yes, one does not expect a child to be sexually active before a certain age, and ideally not for a very long time. But life doesn't always go as planned--to put it bluntly, rape happens. Why add to the world's suffering where one doesn't need to?

#386 Exactly.

However, my point was more along the lines of, even if you are willing to make the assumption that your own child is a paragon of purity, it's probably not good to assume anyone else's child is.

I am totally stuck on the idea of artisanal vaccines! People in the woo camp will take ANY supplement that is said to "boost your immune system"-- and vaccines ACTUALLY DO IT, so it is killing me that they don't see how well it dovetails with their philosophy!

Obviously, vaccines just need different packaging. Instead of bringing the loaded syringe out on a tray, CLEARLY the loaded syringes need to be presented in a lovely box with pictures of flowers that plays Tibetan windchime music and emits the fragrance of wild chamomile and lavender when the healthcare practitioner opens it. Then s/he tells them how the pressure point selected for the vacupuncture has been revered for centuries by indigenous peoples worldwide as a chi point known to stimulate the immune system when needled with a potion that has been carefully formulated with the healing intent of millions (of research scientists and lab techs)!!!

By Melissa G (not verified) on 29 Mar 2013 #permalink

LOL Melissa G - that is brilliant!

lilady,

@ Todd W. Your link led me to the Medscape sign-in page, not the article you referred to.

That was me, not Todd. Apologies for that, I do try not to link to information that requires registration. If you are already signed in, as I was, it takes you straight to the page, so I didn't notice. Thanks for posting the data about adding HBIG to the hepatitis B vaccine. A failure rate of 0.003 % is very much more impressive than 28%. My point was that the majority of neonates' immune systems are quite capable of being stimulated by the hepatitis B vaccine, contrary to Heather's claim that, "one day old babies do not have a fully functioning immune system to stimulate with a hep B shot".

By Krebiozen (not verified) on 30 Mar 2013 #permalink

Melissa G #391 - so very true, I wonder if that approach might actually work. If people can be convinced that squirting bleach up their child's rear end stimulates their immune system, they should be perfectly happy with vaccines.

By Krebiozen (not verified) on 30 Mar 2013 #permalink

Living in Europe, I can attest to there being no 'freshly made vaccines without preservatives' available in my part of Scandinavia.

@ Melissa G: That's a keeper !

@ Krebiozen (and Todd W): Sorry for the mix-up.

The "universal hepatitis B birth dose recommendation" was implemented in the United States, to provide some degree of protection to newborns whose mothers were not chronic carriers, but where close household contacts/caregivers might be infected. Unfortunately, there were instances, where OBs ordered the wrong test (hepatitis B surface antibody...rather than hepatitis B surface antigen), then wrote a chart note for the chart that is sent to to the delivery hospital 6 weeks before her due date, that the woman was negative for the hepatitis B surface antigen. Now hospitals require a copy of the actual lab reports...to avoid those instances where the neonates exposed at birth, didn't receive the vaccine and HBIG within 12 hours of birth.

http://www.cdc.gov/hepatitis/hbv/pdfs/serologicchartv8.pdf