Antivaccine journalist Sharyl Attkisson tries once again to convince us that vaccines cause autism

Of all the clueless antivaccinationist out there, one stands out as being particularly dangerous to public health. That person is the antivaccine reporter whom I've periodically been forced to castigate ever since around 2007 when she laid down such a seethingly hot bit of napalm-grade antivaccine stupid that she grabbed my attention with her combination of ignorance and arrogance (a.k.a., the arrogance of ignorance or the Dunning-Kruger effect), Sharyl Attkisson. Since then, Attkisson has managed to get on my radar through her sucking up to Andrew Wakefield, playing footsie with the antivaccine cranks at Age of Autism, deceptively promoting the Hannah Poling case for antivaccine propaganda, and exploiting the murder of an autistic teen to promote antivaccine views last year. Back in March, she resigned from CBS News, reportedly due to frustration over what she perceived to be the network's liberal bias and lack of dedication to investigative reporting. I had wondered what she's been up to since then.

I probably shouldn't have. If anything, her departure from CBS News has led her to her becoming, if anything, even a bigger crank than she was before. I learned this when a reader made me aware of a post on her website entitled The Search for Safer Vaccines. It's a classic example of the sort of conspiracy mongering that should have gotten her canned from CBS News a long time ago but somehow didn't, beginning with:

Vaccine-injured children who end up with autism are quietly winning their cases in federal court, but only when they focus on using the more general terminology of “brain damage” rather than calling it “autism.”

No, no, no, no, no! It is the antivaccinationists—like Attkisson—who conflate autism with "brain damage," not the Vaccine Court. A perfect example of that was an unethical little human subjects study that never had IRB approval from Pace Law School that did not show what its investigators thought it showed; that is, that the Vaccine Court had compensated 83 families for vaccine-induced autism, using exactly the same sort of verbal prestidigitation that deceptively conflates brain damage from encephalitis that results in autism-like symptoms with autism caused by vaccines itself. As I discussed in detail, though, given that the authors could only find documentation of autistic symptoms for only 39 of these children and that this was out of approximately 2,500 children compensated, the proportion of children compensated by the Vaccine Court who had a diagnosis of autism was not outside the estimated prevalence of the condition in the general population.

Thus does Sharyl Attkisson discover the tragic case of Elias Tembenis, a boy who developed seizures after the DTaP combination vaccine back in 2010. Surprisingly (to me, at least) I had never discussed this case before, although Elias had been featured on various antivaccine websites before as slam-dunk evidence that vaccines cause autism and kill. Fortunately, those same websites also include links to the actual Vaccine Court ruling. But first, let's see what Attkisson has to say about it:

Take the tragic case of little Elias Tembenis. It could teach us something about how to make vaccination even safer for at risk children. Who could be against the idea of making vaccination–or anything–as safe as it can possibly be?

Yet raising this simple and logical question has largely been made taboo by pharmaceutical interests and vaccine activists who have long fought a PR campaign to squelch any discussion about vaccine safety and the autism connection; and have falsely portrayed journalists and researchers who pursue it as “anti-vaccine.” The vaccine pharmaceutical activists troll the web for scientific studies and articles that investigate vaccine side effects and then use social media, bloggers and other forums to launch their attacks and incorrectly claim the autism link has been “debunked.” They monitor and edit Wikipedia pages in an effort to downplay research that demonstrates associations between vaccines and autism, and to disparage those who investigate the links. They apply pressure to managers of news organizations that employ journalists who dare to explore the factual connections between vaccines and various serious side effects.

Yes, here we go again. Attkisson and other journalists who swallow the antivaccine line are "falsely portrayed" as being "anti-vaccine" by evil pharma drones who want to "squelch" The Truth any discussion of vaccine safety and the imagined connection between vaccines and autism. And, of course, they maintain a conspiracy to attack The Truth any discussion of a vaccine-autism connection by the Brave Maverick Seekers of Truth like Attkisson and her hero Andrew Wakefield. To do so, under the orders of Lord Draconis Zeneca (praise be pharma's name), these "vaccine pharmaceutical activists" attack the Brave Maverick Seekers of Truth through social media and proclaim the vaccine-autism link "debunked. Of course, the vaccine-autism link has been pretty thoroughly debunked. It's been extensively studied over and over again, and not a whiff of a hint of a correlation between vaccines and autism has ever been found by reputable researchers. I say "reputable," of course, because a lot of disreputable researchers, such as Andrew Wakefield, Mark and David Geier, and the like have carried out truly bad studies and claimed to have found a correlation between vaccines and autism. "Claimed" is the key word, because, as I've discussed from the very beginning of this blog nearly a decade ago more times than I can even remember anymore, these claims invariably fall apart, as the massive flaws in the studies claiming to have found correlations invariably make themselves known with only a cursory examination of their methodologies by knowledgeable people.

One can't help but wonder whether there's a bit of a personal note in there as well. Notice how she complains about these very same "vaccine pharmaceutical activists" supposedly complaining to managers of news organizations that employ journalists like her. I can only hope that many of our number have complained to CBS News about Sharyl Attkisson's misinformed, deceptive, and just plain wrong reporting about vaccines. Of course, methinks the lady doth protest too much, because Attkisson's been doing the antivaccine reporting thing at least seven years (that I know about) and CBS News never fired her, even after she compromised journalistic integrity by having undisclosed contacts with an antivaccine group and failing to disclose that her sources consisted mainly of antivaccine activists and a company associated with Andrew Wakefield. Of course, she's not the only one who gets complaints sent to her employers.

So what really happened to Elias? First, it's interesting to note that the story to which Attkisson links is three and a half years old. It had been rehashed across the antivaccine blogosphere back in late 2010 and early 2011, although to me it was not at all clear how old the article is when I looked at it. It bore a copyright of 2014 beneath it and there was no date.

Be that as it may, the story of Elias Tembenis is not as clear-cut as antivaccinationists would like you to think. If you read the ruling and Seth Mnookin's discussion of the case from 2010, you'll see that. First of all, Elias' death was years after his original reaction to the DTaP vaccine. Elias was born on August 23, 2000, and his development appeared normal during the first few months of his life. On December 26, 2000, at age 4 months Elias received the second dose of the DTaP vaccine. From here, Mnookin describes what happened:

The next day, Elias’s parents discovered him having a seizure in his crib and took him to the emergency room. At this point, the clarity regarding his medical history begins to grow more opaque. On the one hand, Elias’s white blood cell count were elevated enough to suggest that the seizure was the result of a previous infection and not a reaction to a vaccine-induced fever; his head circumference was in the 95th percentile for his age, which raised warned flags for a rare genetic condition called Sotos syndrome. (Wikipedia’s description of Sotos syndrome is included at the end of this post) On the other hand, the temporal connection between his DTaP vaccination and his initial seizure suggested some causal correlation was possible, and while Elias’s father’s head was in the 95th percentile for adults, he was perfectly healthy.

The ruling discusses how Elias had a number of seizures over the next several months, several of which required admission to the hospital, and how he didn't receive his six month DTaP vaccine but was noted in March 2001 to be "an alert, chubby, vigorous, handsome infant." A year later, on February 25, 2002, he received his next DTaP vaccine. In September 2002, Elias' father wrote a letter to his pediatrician describing how Elias had experienced 40 seizure bouts between his four month and 18 month checkups.

Mnookin describes what happened after:

By the time Elias was eighteen months old, his doctors indicated that he showed signs of a developmental disorder on the autism spectrum. As time went on, his seizures all but disappeared — he only had one between the beginning of 2003 and the end of 2006 — but it became more obvious that he did, indeed, have a pervasive developmental disorder. Despite a lingering uncertainty over his correct diagnosis, his medical charts repeatedly mentioned Sotos syndrome.

About a year later, on November 16, 2007, when Elias was seven years old, he was brought to the hospital with a cough and fever, after which he went into status epilepticus. This is a condition in which a seizure becomes intractable. Most seizures are limited in duration and don't last more than a few minutes. Status epilepticus is a tonic-clonic seizure (i.e., a a "classic" seizure, exactly the sort of seizures that most people picture when they hear the word "seizure") that keeps going on and on and on and on. It's a life-threatening emergency, and in Elias' case he developed bradycardia (a slow heart rate) and then went into cardiac arrest.

This is, as are all deaths of children, a tragic case, but it also demonstrates how fluid the concept of causation can be in vaccine court. In essence, this is a classic case of the Vaccine Court ruling based on "50% and a feather." For instance, the judge wrote:

The preponderance of evidence standard under the Vaccine Act requires proof that a vaccine more likely than not caused the vaccinee’s injury. Althen, 418 F.3d at 1279. Causation is determined on a case-by-case basis, with “no hard and fast per se scientific or medical rules.” Knudsen, 35 F.3d at 548. A petitioner may use circumstantial evidence to prove her case, and 10 “close calls” regarding causation must be resolved in favor of the petitioner. Althen, 418 F.3d at 1280.

In other words, contrary to the claims of antivaccinationists about the Vaccine Court, the court bends over backwards to give the petitioner the benefit of the doubt, noting elsewhere:

I find that Petitioners have established that, in circumstances like Elias’s, a complex febrile seizure can lead to epilepsy. Further, Petitioners have established a logical sequences of cause and effect showing that Elias’s vaccine-induced complex febrile seizure was a legal cause of his subsequent epilepsy. Although the record shows that Elias may have suffered from other conditions, unrelated to vaccination, that increased his risk of developing epilepsy, Respondent [i.e., the federal government] has not shown that those conditions were at work here. In essence, Respondent’s argument is that the vaccination did not cause the epilepsy because, based on the statistics, it is more likely that Elias’s epilepsy was caused by a congenital condition than by a vaccine reaction. This fact, alone, is insufficient to negate causation.

Followed elsewhere in the ruling by:

Although petitioners have not proven that Elias’s DTaP vaccination was a medically certain cause of his epilepsy and subsequent death, that is not the standard for causation under the Vaccine Act. In enacting the Vaccine Act, Congress made a deliberate choice not to impose on petitioners the burden of producing conclusive scientific proof that an unlikely event actually occurred. Instead a petitioner must only provide reliable scientific evidence to support vaccine causation.

In other words, there's a heck of a lot of uncertainty whether the DTaP vaccine had anything to do with Elias' first seizure, his seizure disorder, and, ultimately, his death. The link was, at best, tenuous even for the Vaccine Court and great evidence that, if anything, the Vaccine Court tends to be a bit too lenient in its standards of evidence more than anything else.

So what was Attkisson about bringing up this story? Hell if I know. She repeats the same claim that was in her three and a half year old article, namely that the government won't study the question: Why are the vast majority of kids apparently vaccinated safely, but a minority become seriously ill, brain-damaged or even die? The problem, of course, is that this is a false premise. Antivaccinationists claim that there are lots of "vaccine-injured" children out there, including autism as such a "vaccine injury," even though there is no evidence that vaccines have anything to do with autism.

What I wonder even more is: Why now? Why is Attkisson resurrecting this issue again on her own website three and a half years later, linking ot her old CBS News article about it from then as though it were new? Who knows? My guess is that it's a cry for relevance and an attempt to claim once again that vaccines cause autism.

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It's been a while since we've heard from CBS News' resident anti-vaccine propagandist Sharyl Attkisson. When last we saw her, she was sucking up to the man whose discredited pseudoscience started the modern anti-vaccine movement, Andrew Wakefield, a man who went on to have his medical license…

She seems to have a bee in her bonnet over autism and vaccines. I wonder what triggered it? Did she maybe think it would make her name?
It's a pity. She's basically thrown away her name over this. As to the story of Elias Tembenis, it's clear the family were compensated because the courts ruled that the DTaP may have contributed to his death. Nothing to do with autism. It's "Hannah Poling: The Sequel" but more tragic.

By Julian Frost (not verified) on 26 May 2014 #permalink

CBS News didn't fire Sharyl Attkisson for the same reason they didn't fire Lara Logan over the fake Benghazi story -- she took viewers to unconventional places, she gained a reputation as an ass-buster, and yes, the brass probably thought she would make a sexual hood ornament for the network. They chose to exploit these superficial traits instead of checking to see what she said was true.

By Sebastian Jackson (not verified) on 26 May 2014 #permalink

This is the second vaccine related article on her blog, the first being about the very problematic recent Classen article. I expect that we will see more.

By Dorit Reiss (not verified) on 27 May 2014 #permalink

Ms. A, if I recall, was the one who made a big stink about having her computer hacked a couple of years ago -- an incident that many on the right were sure was done by the Obama administration, because she was working on what Charlie Pierce refers to as "Benghazi, BENGHAZI, BENGHAZI!!"

By palindrom (not verified) on 27 May 2014 #permalink

Yep, they was her, and it made her look rather...off. Even people who kind of liked her were a bit...confused.

Those excerpts really read like conspiracy theorist website. It would fit right in on an AoA thread of Natural News or Alex Jones or TMR or any of them. WHY is she so dedicated to this?

I wonder how many investigative reporters have gone 'round the twist.

By AnObservingParty (not verified) on 27 May 2014 #permalink

Of course, methinks the lady doth protest too much, because Attkisson’s been doing the antivaccine reporting thing at least seven years (that I know about) and CBS News never fired her

Not exactly. But there were unresolvable differences and they let her go/she left. Without another job or job offer in the picture.

That's pretty close.

(Needless to say, it doesn't make her a victim of persecution by the Pro-Vax Mafia, regardless.)

I wonder how many investigative reporters have gone ’round the twist.

I doubt that she's really an investigative reporter -- as in "one who does investigative reporting" -- as much as she's someone who was paid to play one on TV.

That's usually the case with on-camera personalities, for network. Mostly the producers do the reporting, such as it is.

@AnObservingParty: Seymour Hersh has been saying odd things of late.

By Sebastian Jackson (not verified) on 27 May 2014 #permalink

WHY is she so dedicated to this?

Simpler explanation: she believes in it. Or at least, she believes she latched on a big story and she is doing the right thing for a journalist, milking it for all it's worth.
If we can have a business magnate siding with birthers (and coincidentally - or maybe not - also with antivaxers), not to mention a few senators approving of faith healing and disapproving of evolution and/or vaccines, surely we can have a journalist going on the antivax side.
Never ascribe to malice...

Starting with bad opinions of liberals, as for the lady here, may help jumping on the antivax bandwagon, if you approach the antivax movement via the libertarian/ less government regulation angle. It's reinforcing preconceived beliefs.

By Helianthus (not verified) on 27 May 2014 #permalink

I do wonder if she has a personal ax to grind- either a family member or friend who had a 'vaccine injured' child may have introduced her to anti-vax's talking points OR if she holds a grudge against SBM, perhaps because a family member died and she blames doctors**.

The most fervent disciples in this area appear to be those with a personal stake- either because of a relative's condition or because they have something to sell.

** family or personal health issues has fuelled the rise of a health guru or two.

.

By Denice Walter (not verified) on 27 May 2014 #permalink

HAVE fuelled....

By Denice Walter (not verified) on 27 May 2014 #permalink

Notice how she complains about these very same “vaccine pharmaceutical activists” supposedly complaining to managers of news organizations that employ journalists like her.

When you fancy yourself an investigative reporter, as Atkisson does, then being able to play the martyr card enhances your credibility, at least among those who want to hear what you are saying. The alternative explanation, that people are complaining that she is a credulous idiot, doesn't seem to occur to her--clearly, she's a legend in her own mind.

By Eric Lund (not verified) on 27 May 2014 #permalink

If anything, her departure from CBS News has led her to her becoming, if anything, even a bigger crank than she was before

What did you expect? At least while she was working for CBS, her editors could prevent her from going completely around the bend.

@Eric -- it's that speaking truth to power schtick that Sarah Palin does so well.

Although, in fairness, Atkisson's command of English is superior to Palin's.

I'm thinking that Attkisson, who pulled the name of the deceased child from nowhere, is doing doing some PR for Wakefield's next "documentary"...now that Sir Andy has a deal with a film distribution company to feature his faux "Who Killed Alex Spourdalakis" documentary.

".... In September 2002, Elias’ father wrote a letter to his pediatrician describing how Elias had experienced 40 seizure bouts between his four month and 18 month checkups..."

Sure, I always wrote a letter to my child's pediatric neurologist to describe breakthrough "seizure bouts".

Atkisson’s command of English is superior to Palin’s.

So is Gabby Johnson's, so you're damning Atkisson with faint praise here. Palin's speeches generally don't even rise to the level of authentic frontier gibberish.

By Eric Lund (not verified) on 27 May 2014 #permalink

Attkisson, who pulled the name of the deceased child from nowhere

She didn't get it from nowhere. Atkisson is capable of doing actual research when it suits her, and to the extent that it suits her. In this case, it suits her to get as much relevant information from anti-vax sites as she can, but not to look at other information sources. Three years may be forever in Internet time, but it's not that long in real world time, and she was clearly willing to dig through that much archives to get the information she wanted.

By Eric Lund (not verified) on 27 May 2014 #permalink

Eric -- I was thinking Gabby Hayes, myself.

The incredible thing is that, when she steps out from behind CBS, the standard of her work is incredibly poor. She just scrapes bits of phrase and cliched anti-vax tripe, and stirs it together.

Utter crap. There's hardly a blogger on the topic whose material is so lame.

Instead a petitioner must only provide reliable scientific evidence to support vaccine causation.

That's an overstatement of the actual requirement under the first prong of the Althen test, "a medical theory causally connecting the vaccination and the injury":

"If the Vaccine Act does not require Althen to provide medical documentation of plausibility, then it cannot require her to demonstrate that her specific injury is recognized by said medical documentation of plausibility."

All that's really needed is a medical opinion that the court finds credible.

I had never heard of J. B. Classen before I read Attkisson's article. She presents him as a respected immunologist who just happened to find a number of immune disorders associated with vaccines. A two-minute Google revealed that he is a dedicated anti-vaccine activist, and is best known for that fact. It strains credulity to believe that Attkisson was somehow ignorant of Classen's history, or that she omitted his anti-vaccine background for innocent reasons. No, she deliberately concealed the most important fact about her subject because revealing it would undercut the message she wanted to convey. That is dishonest journalism, pure and simple. Has she always been a dishonest hack, or did her passion for this cause lead her into dishonest hackery? Frankly, I don't much care.

I realize this is off topic, but the post I wanted to comment on has been closed. There is a study being done on baking soda's effectiveness against cancer. See here: http://azcc.arizona.edu/node/4187
Perhaps it does have some merit after all.

@Jacob - been two years, so we'll see.

And of course, the money came from NCCAM.....

@26

Unless I'm totally misreading it, what he's doing isn't really about the efficacy of baking soda, per se. He's devised some way of doing MRIs that (among other things) would enable it to be tested, which (for whatever reason; possibly funding) he seems to have found it useful to highlight. But that mightn't be its only potential application. I mean, tumor pH is tumor pH. Having a way to measure it could come in handy, couldn't it?

Maybe I'm misreading it, though.

According to this here:

http://jnm.snmjournals.org/content/51/8/1167.long

Techniques for measuring the pH of organelles, cytosol, and extracellular fluid in vivo have been consistently improving and converging. Optical techniques based on expression of pH-sensitive fluorescent dye are revolutionizing pH measurements in vitro. With improved detection platforms, optical methods hold promise to be applied in vivo. MR techniques have been developed to measure pHi with endogenous indicators, albeit with low sensitivity. Methods based on exogenous compounds have clearly shown that high resolution and highly sensitivity measurements of pHe (and possibly pHi) are tractable in vivo. Hyperpolarized 13C-labeled bicarbonate techniques may potentially be used in the clinic, and new generations of pH-sensitive PET tracers are under improvement. All these developments are a testament to the emerging view that tissue pH is a biomedically important parameter of tumor metabolism.

So I guess I answered my own ignorant question.

The vaccine pharmaceutical activists troll the web for scientific studies and articles that investigate vaccine side effects and then use social media, bloggers and other forums to launch their attacks and incorrectly claim the autism link has been “debunked.”

I've seen this argument by her before. When criticized (correctly) for her junk piece on Andrew Wakefield's pseudo-documentary on Alex Spourdalakis, Ms. Attkisson claimed that the criticism was part of an "astroturf" campaign. So we know she includes herself in the circle of those "targeted" by Big Pharma(tm).

You are one of her most vocal critics. I've spent my time writing about her as well. I can't speak for Orac, but she never tried to contact me about my supposed pharma ties.

Seems like a pretty major story, doesn't it? Big Pharma, paying people to camp on social media to attack her and others out to present the "facts" about vaccines?

Perhaps if she did her job as a journalist, and didn't try to deflect criticism with unsubstantiated conspiracy theories, she'd still be working as a journalist.

By Matt Carey (not verified) on 27 May 2014 #permalink

@AnObservingParty

But to return to the general vicinity of the topic:

In my (very limited) experience and observation, investigative reporters are not infrequently somewhat eccentric in an extra-tightly-wound kind of a way. But they're not really unstable, and can't afford to be. It's very stressful work. Kochs and spooks and cults surveil and/or smear you and so on.

I can think of one example of one who maybe-arguably cracked. But it seems unkind to name names.

@Sebastian Jackson --

He does that from time to time. But he covers a beat where the players actually do odd things, including but not limited to strategically leaking rumors to the press about the odd things that they may or may not really be doing in order to confuse and intimidate their opponents.

So he's bound to, occasionally. IMO.

Pardon my musing but it's been a long day...

I've often wondered how particular sources ( reporters, bloggers, woo-meisters) are taken _at their word_ by the entranced whilst others- like us- are immediately dismissed despite evidence and common sense.

Right, I know that there is a process of identification occuring with those who bear similar beliefs- a solidarity against common enemies and that leaders exacerbate those tendencies and stoke those fires. But I venture- in vain hope most likely- that there HAS to be a way around this barricade or facade or whatever it is.

We have data and evidence but it seems to me that many of those on the fence ( and in the opposite court) need an additional impetus to come to their senses. If they doubt us, why would they go through the bothersome task of reading detailed material?

Lately I've asked myself- what to we have to offer *prior* to giving data and studies? What would make us appear more trustworthy to those who have heard endless repetiitve redundancy about pharma shills, elitists and greed? How can we 'get through' to show that we've been mis-represented? That there is a possibility that we are not all evil incarnate ( seriously, how could anyone believe that ?)

The obvious first step- to me- is to get them to question their sources. What makes them above suspicion? Do they not have conflicts of interest? Aren't they trying to sidle up to their followers by flattery? Aren't they demonising any and all critics? I can detail many of their methods.

I just heard a loon say that pharma & friends lie about hiv/aids, cancer and VPDs because their products ( meds and vaccines) make money off of these conditions when OBVIOUSLY the person who reports this is MAKING MONEY selling altie cures and treatments and disparaging SBM. It is his direct competition.

It's the same with Attkisson: she got attention and pay *because* of her slant and now, post-career, she's trying anew for another position. Andy was struck off, fired and ignored, so now he's making movies.

By Denice Walter (not verified) on 27 May 2014 #permalink

Tangent time--

Attkisson used CBS to plug Andrew Wakefield's film career by doing a piece on the Alex Spourdalakis story.

Mr. Wakefield spoke last week at AutismOne. What, do you imagine, is the reason he gives for doing films like this?

To convince the agnostic about vaccines and autism. In specific, the example he gives is that he wants to convince people that doctors know vaccines cause autism and are hiding this fact.

http://leftbrainrightbrain.co.uk/2014/05/28/andrew-wakefield-apparently…

But, hey, Attkisson used up a lot of CBS' time to promote Andrew Wakefield's documentary.

I'd say she got used but I don't believe it at all.

But, don't criticize her! That would make you a pharma shill. Part of the astroturf campaign that is trying to keep the truth out.

By Matt Carey (not verified) on 27 May 2014 #permalink

Lately I’ve asked myself- what to we have to offer *prior* to giving data and studies? What would make us appear more trustworthy to those who have heard endless repetiitve redundancy about pharma shills, elitists and greed?

Ironically, a form of actual misrepresentation. I never had the slightest problem at MDC – taking apart the completely wrong seems to be perceived as a form of shoring up the nearly completely wrong. Rinse, lather, repeat.

Lately I’ve asked myself- what to we have to offer *prior* to giving data and studies? What would make us appear more trustworthy to those who have heard endless repetiitve redundancy about pharma shills, elitists and greed? How can we ‘get through’ to show that we’ve been mis-represented? That there is a possibility that we are not all evil incarnate ( seriously, how could anyone believe that ?)

It's very difficult to approach questions like that when you're not dealing with rational people if you happen to be one yourself, I've always found.

I'm not joking. It can be pretty painful. Frustrating, too.

Back to the o/t of baking soda and breast cancer is this quote from http://news.engr.arizona.edu/news/ua-biomedical-engineers-find-new-test…

"Drinking baking soda shows great promise as a way to reduce or eliminate the spread of breast cancer to the lungs, brain and bone, but too much baking soda can also damage normal organs."

Why do they have to keep dragging baking soda into this? And when you put it this way on a genuine university web page, you will get people going off and ingesting whole boxes of Arm & Hammer.

By Chris Hickie (not verified) on 27 May 2014 #permalink

“Drinking baking soda shows great promise as a way to reduce or eliminate the spread of breast cancer to the lungs, brain and bone, but too much baking soda can also damage normal organs.”

The danger of ingesting too much baking soda isn't so much damage to organs as the possibility of alkalosis leading to respiratory collapse.

As for the "great promise" of sodium bicarbonate as a cancer treatment, this is entirely based on work in mice, for example this study,. The differences in size alone may make things very different in humans - the sizes of life-threatening tumors in mice and humans are very different, so the dose of sodium bicarbonate required to increase the extracellular pH of a solid tumor will also be very different. Even in mice it only seems to be effective for reducing metastasis and perhaps tumor density (though not size) in some types of cancer.

There are a couple of studies using sodium bicarbonate on human cancer patients listed on the clinical trials website, one was terminated for some reason, another is recruiting, but it will be interesting to see what effects it has, if any, if it ever gets published.

It would be great if simply ingesting some baking soda would reduce the chances of metastases, but it certainly isn't clear that this is effective in humans, yet. For all we know it may increase tumor growth, as it does for tumors of the urinary tract in rats, as I recall.

By Krebiozen (not verified) on 28 May 2014 #permalink

Its extremely hard to argue with people with entrenched positions - even if they are 'rational.'
I might just invoke old Bayes here - there is always alternate theories, and if you believe proposition X
to be true with a very high degree of certainty, then apparent evidence for ~X tends to be taken as
evidence for some other proposition (ie that 'the evidence is not to be trusted'). And in fact, in a way that
appears contradictory may even turn into greater evidence for 'X', due to what appears to be convoluted
reasoning. I truely believe many conspiracy theorists (including antivaxxers who believe you're all pharam shills)
end up in this loop of increasingly outre beliefs rather than converging on what appears obvious given the evidence.

I might add that depending on your definition of 'rationality' this is not in fact entirely irrational - I
have this position re psychics for instance - a very convincing demonstration of mind reading is to me
evidence of a very clever fraud not of psychic powers -even if someone won the Randi million I would tend to think
'what a very,very clever fraudster' not 'oh look there really are psychics'.

There is also the matter of self-worth: once people entrench themselves into a position, especially very publically,
it seems psychologically extremely difficult to go back.

Basically, I don't think there is any real chance of convincing the adversaries to change their mind - it would take a pretty
advanced - (and maybe dare I say it 'deprogrammed') - thinker to escape from these traps.

What is important is that those that are not entrenched have real reliable information stated in as clear a manner as possible
with which to make up their minds,and to avoid being overly emotive or insulting to the 'other side' lest by lack of
differentiation it appears there really are two valid 'opinions' as opposed to one set of facts. The real battle is for the many 'undecideds' who may come looking for information, not those already committed to a position.

@ Matt Carey

Quoting Wakefield about why he is making movies:

they are for the agnostic

In the context, fence-sitters who don't believe that every physicians are on the take of the conspiracy to hide the link between vaccines and autism.

"agnostic". Interesting choice of words on his part. He is framing the discussion in terms of religious beliefs.
Per se, it's not much, but over a background of black-and-white thinking and martyr rhetoric, it's making a recurring pattern...

By Helianthus (not verified) on 28 May 2014 #permalink

CODA:
The best evidence I can think of not to trust medical research, even that published in reputable journals, is
Wakefield, which is the about the only medical 'evidence' which antivaxxers seems to believe without question.
I mean - what can you do about that?

I have a Facebook friend who's a pretty pushy and self righteous vegan. She's also antivaxx. One of her posts was a link to a page on PETA's website where the lie about milk causing autism was repeated. I blew up and left a comment telling her it was a lie.
F**k PETA. >:(

By Julian Frost (not verified) on 28 May 2014 #permalink

We have data and evidence but it seems to me that many of those on the fence ( and in the opposite court) need an additional impetus to come to their senses. If they doubt us, why would they go through the bothersome task of reading detailed material?

There have been studies done that show that most people, when confronted with evidence that their position is wrong, actually harden their stance on the issue. This doesn't just happen with medical topics either: it also applies to creationism, global warming, and conspiracy theories in general. In short, you can't rationally argue somebody out of a position he didn't rationally argue himself into. And far fewer of us humans are anywhere near as rational as we would like to believe.

That goes double for people who project their service to Mammon onto people on the other side of the issue. It is difficult to get a man to understand something when his paycheck depends on his not understanding it.

By Eric Lund (not verified) on 28 May 2014 #permalink

My favorite part was this:

"The vaccine pharmaceutical activists troll the web for scientific studies and articles that investigate vaccine side effects and then use social media, bloggers and other forums to launch their attacks and incorrectly claim the autism link has been “debunked.”

In other words, people go to the scientific literature and do their research to conclude there is no link between vaccines and autism. Which, ironically, is exactly what the anti-vaxx group wants people to do, but, only if people find those "studies" in which there is a link, no matter how dubious.

@ JCL:

A few years ago, I asked Jake *how* he could believe in such a vast, intertwined imbroglio of conspiracies about vaccines and he said ( paraphrase) that I just didn't know history.

BUT I think I did ask him an important question that might serve to shift the mindstuff of those who aren't in as deep- and as unable to self-evaluate- as he is:

is it more likely that thousands of people in industry, government and media, over decades, around the world, ALL worked together, committed malfeasance, lied and covered up their tracks OR
that one guy committed research fraud.

Similarly, about woo in general:
isn't it in providers' financial interest to speak disparagingly of their competition - SBM?
Would you question governments, experts and the media but take the word of someone who wants to sell you something over the internet?

If I question my own beliefs**-
for me to even start to believe that standard science is mostly a 'fix', I'd have to vote for the 'vast conspiracy' option which is likely only in novels.
Not likely at all.

** SBM is not entirely above suspicion but eventually the crap is sifted out.

By Denice Walter (not verified) on 28 May 2014 #permalink

@ Eric:

I'm aware of those studies which is why I am interested in not directly addressing the beliefs themselves at first. In other words, make it about the source.

AND I do believe that woo-meisters are very afraid of sceptics writing about them. Lawyers are called in quickly.

@ ann:

I think we have to differentiate rational thought from people who are rather lucid in most other respects from those with SMI. We have a chance with the former.

By Denice Walter (not verified) on 28 May 2014 #permalink

That would be IRRATIONAL thought

By Denice Walter (not verified) on 28 May 2014 #permalink

@Denice
Often I think its step by step, each little step being not a particularly irrational
(or improbable if you like) progression from the last. It is a fact that governments do sometimes lie,
researchers do sometimes commit fraud, medical interventions and treatments are sometimes
eventually shown to have issues and so on and certainly all large commercial enterprises (such as pharma)
engage in dodgy doings to protect their interests all the time. Taken bit by bit, and adding in doses of personal
experience, developing relationships with like minded people and so on, its not necessarily hard to see how
people might end up at an end point which looks almost insane if you haven't travelled that path.

One of the greatest problems from the Wakefield study was that people took up and expressed publicly strongly emotional
positions, and had a big boost to their (maybe) otherwise fairly mild beliefs, and in doing so started to adopt other
supporting beliefs, to the point where for people like Jake, its not just a matter of saying he was maybe wrong in his views
on vaccines - which he would find hard enough to do - but he is wrong (or at least very imbalanced)
on a very large part of his whole world view which supports the initial belief.

More important than trying to argue with someone like Jake, who is probably 'honestly deluded' is actually to
attack the cynical - nay criminal - people who don't have these beliefs - don't care about the issue, or anyone else, but are
prepared to exploit it and them for their own ends. This is not a matter of rational argument - since they do not actually believe in their statments anyway - it is a matter of exposure, appropriate legislation and so on. I put Wakers in this category - he should be doing time imho - ,
and a few other people mentioned often hereabouts - this journo I don't know about - is she just cynically trying to exploit
and expand some niche newstory for her own ends, or does she really believe what she says?

Apologies, Orac. Saw it come up in my Twitter feed. Didn't realize they'd been bringing the crazy (on this subject) for that long. Though it shouldn't surprise me, given how long they've brung the crazy on other subjects.

By Andrew S. (not verified) on 28 May 2014 #permalink

It's interesting to read James Laidler's "Through the Looking Glass; My Involvement with Autism Quackery"/ Autism Watch. He describes how he got sucked in and what de-programmed him . But then, he's a bright guy.

Psychotherapists help clients to question their unrealistic beliefs and compare them to what they find in the real world and then, adjust accordingly.

Do woo-believers need therapy? Well, I can't answer that for you- what do YOU think about it?

Here's a real life 'change in vaccine beliefs' by someone I know and my own influence :
my cousin feared vaccinating his newborn son ( Oct 2001) and did so with hesitation- probably because of all the hubbub Andy created. He and his wife are smart and hip with techie careers ( he creates 'movie magic'; she's a mathematician).

He asked what I thought and I told him that my studies made me NOT fear vaccines ( primarily in physio neurodevelopmental) and that if I were in his position, I'd go ahead AND that I always thought that AJW's project seemed "off"- it didn't fit with what I already knew.

A few years later, he thanked me and mentioned that he had read about AJW. He and his wife are also bright people who were very afraid of anything happening to their child who finally arrived after 12 years of marriage.

Many of those already sold on Andy's work are most likely beyond help BUT those who are future parents or worried parents of infants might be reached.

Notice that in woo-topia, the Gospel as preached usually revolves around eating clean, vegan, non-GMO, organic foods to prevent most ills- how many people follow that agenda? Low single digits, I'd suppose.

Similarly, how many parents don't vaccinate AT ALL or selectively vaccinate? Probably 1% and 10% respectively ( Mnookin).
I think Andy's figures are- like most else about him- inflated.

By Denice Walter (not verified) on 28 May 2014 #permalink

@ Jeff 1971:

Lewis seems to have continued to surround himself with sludge even after he left the agency:
I've heard him interviewed @ PRN by the head honcho there and he also appeared IIRC on Kohn's and on Celia Farber's shows ( both of which have gone disappeared).

Interesting how these creatures coalesce at AutismOne and on PRN.

By Denice Walter (not verified) on 28 May 2014 #permalink

Brian Deer is making fun of the human sludge expert David Lewis, who has allied himself with Andrew Wakefield

I particularly like Deer's comment on one of Lewis' allegations: "This should be handwritten in green ink and cc’d not merely to UCL, UKRIO and HEFCE, but also to David Cameron and the Archbishop of Canterbury."

By herr doktor bimler (not verified) on 28 May 2014 #permalink

More of David Lewis' crappy science...from the Autism One 2014 Conference. He's fixated on the seasonal influenza vaccine and the Rhogam shots given to pregnant women, now that the removal of Thimerosal was removed from all childhood vaccines thirteen years ago and the prevalence of ASD diagnoses continues to rise:

http://www.autismone.org/content/how-lie-generation-families-malfeasanc…

As if Autism One speakers weren't bad enough**

the Thinking Moms have a new book out!

** altho' BD's comments on Lewis were hilarious.

By Denice Walter (not verified) on 28 May 2014 #permalink

As an rH-negative mother of an autistic child, I'd like to offer an interesting N-of-one observation: my cumulative Rhogam exposure was much greater by the time my second child was born (I'd had one dose while pregnant with my first, one dose after her birth, and one dose while pregnant with my second, and then a fourth after she was born), yet it's my first that is autistic.

In any case, I'd definitely take autism over hemolytic disease of the newborn.

By Calli Arcale (not verified) on 29 May 2014 #permalink

The Morbidity and Mortality Weekly early release is out. 288 cases of measles this year, the most since the disease was declared eliminated in 2000.

And it's only May....

The article I read today said that number doesn't include 28 new cases in Ohio, and the state healt dept. is expecting that outbreak to last well into summer.

Isn't 28 new cases in a week kind of high? Shouldn't there be protections in place by now to make a dent in the spread?

By Uselesstwit (not verified) on 29 May 2014 #permalink

And the measles outbreak continues, as well:
http://www.nbcnews.com/health/health-news/measles-cases-u-s-spike-highe…

Fueling the record rise are measles infections imported by unvaccinated travelers who brought the highly contagious virus home to equally unprotected communities.

Some 97 percent of the measles cases reported so far have originated in other countries. About 70 percent have occurred in people who were unvaccinated, mostly for religious or philosophical reasons, and another 20 percent were in people whose vaccination status couldn't be confirmed. About 10 percent of cases were in people who'd received at least one dose of measles vaccine, the CDC said.

Cases have been confirmed in people as young as two weeks and older than 65 years, CDC officials said. The most common complication so far has been pneumonia. No deaths have been reported.

By squirrelelite (not verified) on 29 May 2014 #permalink

@Squirrelelite - that seems to very much confirm that overall effectiveness of the vaccine (and in line with the stated effectiveness percentages).

There's already a well-known syndrome to describe Nobel Prize winners in science who go off the rails and start promoting quackery, pseudoscience and other nonsense (the "Nobel Disease").

Attkisson sounds like a possible victim of what could be called "Murrow Disease" (named after Edward R. Murrow, whose name is on a distinguished reporting award given to CBS for one of her non-vaccine related stories). Her illogical antivax fervor is a warning sign that her best reporting days are behind her, and other bizarre preoccupations are yet to come.

I'm just surprised that Fox News hasn't scooped her up yet. She's been all het up about Fast and Furious and Benghazi, she apparently loathes the Obama Administration and the pseudoscience stuff (climate change denial would be icing on the cake) makes her a natural for Fox.

By Dangerous Bacon (not verified) on 29 May 2014 #permalink

** altho’ BD’s comments on Lewis were hilarious.

I have such a crush on that man, it's shameful.

Yes, Lawrence.
I agree.

The best news is that there are no deaths yet. Although, as the numbers continue to rise, our luck may not last through the end of the year.

By squirrelelite (not verified) on 29 May 2014 #permalink

@squirrelelite, "our" luck will probably be just fine, it's the luck of some poor immune-compromised and/or an innocent child of some anti-vaxx loon that may run out. Dr. Bob et al. have sure been quiet now that it's more than "a few cases" and ~14% of cases have required hospitalisation.

By Science Mom (not verified) on 29 May 2014 #permalink

On the subject of the measles outbreak, I also saw a story that OH is sending PH nurses door to door in Amish communities looking for cases. It is likely that some of the cases being counted now are newly discovered by PH but in actuality took place possibly weeks ago. That is a fairly isolated (and be design) low tech community. Plus it is very difficult from a PH perspective to get a handle on measles once it starts spreading in a community. The Amish themselves seem to have put in place home quarantine (again this works only if they stick with it) and HD is offering free vaccine everywhere and apparently having some luck with uptake but it takes time to get a handle on it. They are probably right that transmission will continue into summer. Once you get past a third generation in measles it's hard to stop it.

She are right, some vaccines causes authism and other health problems. This vaccines will cause depopulation, this is the intention. We are too many. The world owners feel afraid from us because the number of peoples are too high.
See this video, is very interesting:
https://www.youtube.com/watch?v=qo7uPBVBcJw

Has to be a Poe. No one that illiterate can find their way to a keyboard.

Shay, hover your mouse over the first link. I did not click on it, but it looks like the comment was intended for humor.

The best news is that there are no deaths yet. Although, as the numbers continue to rise, our luck may not last through the end of the year.

As AoA commenter Barry helpfully informs everyone,

"The bottom line for me, is that if you live in North America and measles ends your life… then you already have at least one foot in the grave."

That's right kids, it's your own fault.

I clicked on the link. there is indeed some funny stuff at that link, but it has nothing to do with the conversation. Pretty sure it's just spam.

By Antaeus Feldspar (not verified) on 01 Jun 2014 #permalink

The bottom line for me, is that if you live in North America and measles ends your life… then you already have at least one foot in the grave.

So there's no reason anyone should lift a finger to prevent measles from shoving you the rest of the way in.

I notice no one over there commented on what a reprehensible statement that was.

They did jabber a lot about measles immunity wearing off because people are not exposed to wild measles in the commnity. If that's true, then that calls for boosters. Perhaps we should get MMR boosters every ten years just like TDaP.

I've been told by older people that there were smallpox boosters back in the day, and that was a much nastier vaccine than the MMR. If there were a recommended MMR booster, I'd be lining up with my sleeve rolled up.

So there’s no reason anyone should lift a finger to prevent measles from shoving you the rest of the way in.

Or to have the slightest concern about defective, weakling offspring succumbing to vaccine-induced brain damage. Leave 'em in the wilderness; it would have been something one way or the other.

I notice no one over there commented on what a reprehensible statement that was.

Nor did they manage to arrive at the foregoing conclusion.

They did jabber a lot about measles immunity wearing off because people are not exposed to wild measles in the commnity. If that’s true, then that calls for boosters.

Right: it calls for "boosters" by way of making sure other people are sickened to provide them. I think it just might be slowly sinking in that circulating MeV antibodies wane regardless of their origin, which poses more than one problem for the playbook.

The identification of a lone case of transmissions after secondary vaccine failure was a cause for pants-wetting glee; I wonder what will happen if a case of failure of "natural" immunity winds up being conclusively documented. It is already known that disease-based transplacental passive immunity only has a couple of months on vaccine-induced passive immunity.

As AoA commenter Barry helpfully informs everyone,

“The bottom line for me, is that if you live in North America and measles ends your life… then you already have at least one foot in the grave.”

That’s right kids, it’s your own fault.

Is this the same "Barry" who pops up in the Autism Investigated threads -- as in Barry Segal?

By Sebastian Jackson (not verified) on 01 Jun 2014 #permalink

Shay @70

Has to be a Poe

On behalf of brians everywhere, I'd like to apologize for the post above from someone who apparently shares my name..

Oh, if only my parents could have given me a unique name, like, say, "Moon Unit" or "Dweezil."

(BTW, if Wakefield hopes to ever conclude his suit against Deer, Godlee, and the BMJ, why did he, just last week, yet again make another filing in the suit that he appealed 21 months ago?)

Is this the same “Barry” who pops up in the Autism Investigated threads — as in Barry Segal?

Nonono. AoA and Segal are on the outs. The only reason I have some recollection this Barry is that at some point, somebody else happened to comment with the same name, which led to initial confusion and some tedious follow-on. Except for Real Barry, that is, who injected a comment into the revolving D'Olmsted blurb comments suggesting, IIRC, that it represented What These People Will Stoop To or something.

(BTW, if Wakefield hopes to ever conclude his suit against Deer, Godlee, and the BMJ, why did he, just last week, yet again make another filing in the suit that he appealed 21 months ago?)

They originally filed the additional authority, which must be stretched like taffy to turn it into what they want it to be, in January. That filing, however, was completely bungled, so it's only now been "perfected."

I do not have a child with autism, but my son who was born at 27 weeks had an immediate, severe reaction to the last vaccine he had 5 years ago, promting me into this whole world of "vaccine vs anti vaccine". I am part of a biomed group in which the mothers are mostly mothers of autistic kids. The vast majority claimed adverse reactions within 24 hours of vaccination. They have all gotten genetic tests done showing mthfr variation (among many others). This gene ultimately affects glutathione, the primary detoxer for heavy metals. (There are lots of studies finding low glutathione levels in a large subgroup of autistic kids). I do see a lot of misinformation on some antivax sites, but I have also seen some very compelling evidence that has nothing to do with Jenny McCarthy. These moms have kids who have greatly improved or lost their dx after genetic testing, bloodwork, various lab tests, diet changes, supplements, allergy testing, and/or chelating. Its much bigger than "vaccines cause autism" and these women dont all claim that vaccines were their worst problem. But a significant amount had serious, immediate, seemingly permanent changes right after vaccinating and had dramatic improvements after chelating. They are claiming genetics loaded the gun and vaccines pulled the trigger. Its hard not to take them seriously with all the hard evidence they have through various medical testing.

@Meg - and most of that testing is done through DAN! Doctors who get paid handsomely for "heavy metal" treatments - like chelation (which has killed kids).....if there is actual medical science available, I'd ask those parents to provide it....

I have to wonder why "meg", who claims her non-autistic child had a bad reaction following a vaccination, is involved with mommies of autistic kids who promote biomedical treatments and who bring their kids to crank doctors to have their children test for "heavy metals toxicities". What kind of biomedical interventions have you implemented for your non-autistic child, meg?

What was the immediate severe reaction your child experienced, meg? Was it an anaphylaxis reaction? What did your child's physician tell you about that reaction and are you following your child's physician's advice about vaccinations?

"(BTW, if Wakefield hopes to ever conclude his suit against Deer, Godlee, and the BMJ, why did he, just last week, yet again make another filing in the suit that he appealed 21 months ago?)"

Looks to me as if Wakefield may fear what he wishes for. The Texas anti-slapp law was last year made more beneficial to respondents. In the unlikely event that Wakefield won jurisdiction, he then faces an anti-slapp which may mean he has to pay BMJ's attorney fees.

The amended law means that a respondent can win the motion - and fees from the petitioner - on a preponderance of the evidence: essentially summary judgment. That must be worrying Wakefield.

Meg -

Do they have any evidence that isn't in the form of affirming the consequent?

If you don't understand that, let me explain it: "affirming the consequent" is when someone argues "If A happened, it would cause B to happen. B has happened. Therefore, that is evidence that A happened."

Let me present two arguments, both in the "affirming the consequent" form. Because they are in the same form, and the evidentiary base for the premises is the same, either both arguments hold up, or both fail. (I'll be using "chelation" as a shorthand for all those methods used by those mothers that you mentioned in your comment.)

If vaccines cause autism by doing damage that can be treated by chelation, then autistic children treated with chelation should improve.
Jeremy is an autistic boy who improved after being treated with chelation.
Therefore, Jeremy's autism was caused by vaccines.

Now, compare it to this argument:

If Martian 'doom beams' cause autism by doing damage that can be treated by chelation, then autistic children treated with chelation should improve.

Jeremy is an autistic boy who improved after being treated with chelation.

Therefore, Jeremy's autism was caused by Martian 'doom beams'.

You see the problem, now? You cannot say 'well, one of those is clearly unreasonable, but the other one is just fine' - if the logic is flawed for one, it's flawed for the other as well.

People often assume some treatment must have worked for their child's autism, otherwise the child would never have made whatever progress they were observed to make. But that isn't true. Autistic children's development is often slower and less predictable than that of neurotypical children, but it still happens. Look up what happened with Kanner's original patients! They were followed up, and most of them were functioning in society on their own - I highly doubt it was because anyone was chelating them.

By Antaeus Feldspar (not verified) on 02 Jun 2014 #permalink

They have all gotten genetic tests done showing mthfr variation (among many others). This gene ultimately affects glutathione, the primary detoxer for heavy metals. (There are lots of studies finding low glutathione levels in a large subgroup of autistic kids).

This is an interesting example of an up and coming woo trend I've been noticed...'MTHFR variation' is the new 'epigenetic.'

There are indeed some alleles of MTHFR that are associated with disease, although the evidence quality is variable for some of the more complex traits: http://omim.org/entry/607093

What all these people offering 'MTHFR variation tests' don't tell you is that benign, protein-altering variation in MTHFR is very common:
http://evs.gs.washington.edu/EVS/PopStatsServlet?searchBy=Gene+Hugo&tar…

Getting a test that says you have an MTHFR variant means literally nothing. The evidence base is there really only for the rarest variants (that cause severe Homocystinuria), and there are legitimate clinical tests for these alleles: http://labtestsonline.org/understanding/analytes/mthfr/tab/test/

Compare that to the woo-ified version: http://doccarnahan.blogspot.com/2013/05/mthfr-gene-mutation-whats-big-d…

@Jeff1971

IANAL, so I didn't note that the Texas Anti-SLAPP law had been amended to even more strongly protect the likes of Deer and Godlee and to make it even more unlikely that someone like Wakefield could prevail. I did note that the law was intended to protect the "exercise of free speech [including communication made in connection with a matter of public concern" and that a "matter of public concern includes an issue related to health or safety."

I don't understand how Wakefield can hope to prevail, but it is clear that he can hope to continue to solicit contributions from his followers as long as he maintains the appearance of fighting. (Indeed, if the Deer/Godlee/BMJ suit fails, there's always Forbes and Emily Willingham.)

I joined the biomed group just to learn what other parents are doing and to see if any of it makes sense for my son. A friend who is also a NICU nurse told me about research they had learned about involving aluminum buildup in preemies due to extended IV nutrition. My son was on it soley for 6 weeks and partially for almost 2. The kids they studied were on it for an average of 3 weeks. The kids were at heightened risk for bone weakness, fractures, and aluminum accumulation as teens. They also found high levels in the bones of preemies who had died. He has extreme bone pain and sensitivity. His "episodes" of bone pain occur once a week on average. They bring him to tears, he screams, and he cant walk. At my next ped appt I am going to ask about testing his baby teeth to find out for sure.

I dont know if that is related to his vaccine reaction, but since the last one he had (when he had the reaction) contained aluminum, so that lead me to try and learn more in case there could be a connection. After his last shot, he was so weak and in so much pain within a few minutes after walking out the door, he had to be carried to the car (the shot was in his arm). Within a couple hours, he was in a severe brain fog. He wouldnt answer me or look at me, his eyes seemed to be glazed over, and he wouldnt move much. This is a kid who is usually extremely hyperactive, talkative, and playful. It was not normal and it was too coincidental to blow off. I do not claim to understand the mechanism yet, that is why I decided to look into biomed, as they are the only other group of people I know of who take this kind of thing seriously.

The premise makes a lot of sense to me. Their kids have been genetically tested for common autism genes, the parents create their own plan based of the results (ie one of the genes compromises folic acid, so they supplement, another affects themethyl pathway, so they take several steps to address that). They test for heavy metals, they test for vitamin and mineral deficiencies, they do allergy tests, etc. Some have chelated and caused more problems because their kids couldnt detox, so the metals just moved around and lodged into new places. Not the smartest way of doing it, but it does show there are a significant amount of heavy metals (as do the urine and hair tests). I wont chelate my son until I have proof from bone tests that it is a problem (aluminum primarily accumulates in bones, then brain). And even then I will be smart about it. I have seen some (a minority) of parents suggest alternative therapies that I know are bogus. I wont touch homeopathy or "nutrition response testing". Some do have DAN docs. But many do not. Either way, a blood test is a blood test in many cases. Some of the DAN docs will send them to a hospital or other "respectable" facility to do some tests. Am I supposed to believe they are all in on some conspiracy to trick parents and the kids just coincidentally get better at the same time they address these issues?

Not all the parents claim vaccine damage, and some didnt find any luck with chelation. But they have a different genetic profile than those who do. Autism is a spectrum disorder, so it makes sense that what works for one does not work for another. These parents seem to be under the impression that it is only a subgroup of autistic kids (ones w specific genetic variations) who are damaged by vaccines. And it is an immediate, drastic improvement right after chelation. Hard for me to say they are connecting the wrong dots when so many stories are the same and after seeing what happened to my son.

I am not saying these parents are right about everything, but I have just seen too many "andectodal" stories of success that I cant easily dismiss it. Some of what I learned from those parents has really helped me. I live with a nurse who lets me use his brain and pathophysiology textbook to help me keep it all in perspective and weed out the truth from what is likely bs.

They have all gotten genetic tests done showing mthfr variation (among many others). This gene ultimately affects glutathione, the primary detoxer for heavy metals. (There are lots of studies finding low glutathione levels in a large subgroup of autistic kids).

But oddly, there are none showing mthfr variations associated with an elevated risk for ASDs outside of countries that don't practice food fortification.

Did all these biomed mothers have folate-deficient pregnancies?

As far as biomed I have used...I have only done a few things. I dont have the money to waste on various treatments, so I will only use something if I have a very good idea of whether or not it should help. I have made that mistake, never again.

Allergy tests showed he is allergic to wheat and eggs. We are on an all organic, grassfed meat, high veggie, low sugar and low carb diet. We only do raw milk and cheese. Those changes alone have brought significant improvement in what used to be thought of as ADHD and a mood disorder by old docs. Cod liver oil helps significantly but only if I am consistent. For a reason I have yet to understand, ingesting coconut oil is the only thing that consistenly and dramatically improves his rashes when he has allergies (dogs, cats, outdoor). Auditory therapy has helped, floortime play therapy has been amazing, and essential oils in the air or diluted and on the feet have also noticeably helped. I have tried many things that have not helped. I joined the biomed to learn about chelation, hbot, and anything else I may not know about. If hbot were not so expensive, I would have tried that already. I have not and probably wont try most alternative therapies unless I have compelling reasons to. But most moms I see in my biomed group do things similar to me, only a few more supplements, tests, and often chelation. Some find relief just through the GAPS diet (that is my next likely protocol to try). Its not full of a bunch of Jenny McCarthys (I probably shouldnt bash her, I have never actually read through anything she wrote or listened to her). There is a whole world w these parents that most are unaware of. And its not very woo woo (for the most part. There are some exceptions. But when I called out one mom for Nutrition Response Testing, I got unexpected support from some of the other moms, so they are not all on that bandwagon. Same with homeopathy.)

Actually they have extreme sensitivity to the type of folate. Folic acid causes problems (most of them took folic acid) whereas folinic acid works well for them.

but it does show there are a significant amount of heavy metals (as do the urine and hair tests). I wont chelate my son until I have proof from bone tests that it is a problem (aluminum primarily accumulates in bones, then brain).

Hair tests can't show that.

And urine tests might actually be showing that the body is being depleted of safe (or even necessary, depending on the substance) levels of chelatable metals.

Because they provoke that response:

Urine mercury levels can be artificially raised by administering a mercury scavenger (chelating agent) such as DMPS or DMSA, which collect the small amounts of mercury from the body, concentrate them, and then force them to be excreted. In other words, mercury that normally recirculates within the body is now bound and excreted. The urine level under such circumstances is artificially raised above the steady-state level. A study of urine mercury levels in people given DMSA or a placebo has found no association between the mercury levels and the number of dental amalgam surfaces [1]. The use of a chelating agent before testing—"provoked testing"—should be considered a scam. Anyone told that a urine-mercury level produced after taking DMPS represents a toxic state is being misled.

In February 2005, the State of Connecticut obtained a consent order barring psychiatrist Robban Sica, M.D., from using provoked testing to diagnose "heavy metal toxicity." [2] It would be good if all state licensing boards did the same.

Link:

http://www.quackwatch.com/01QuackeryRelatedTopics/Tests/mercurytests.ht…

(There's a link to an article specifically about hair-testing at the bottom of that page.)

Best of luck to you.

Some have chelated and caused more problems because their kids couldnt detox, so the metals just moved around and lodged into new places.

I'm confused by how that could occur.

The chelating agent binds to the metal (and/or metals), making it water soluble -- and hence unable to bind to something else -- then it gets excreted (along with a lot of vitamins and other stuff, which is one reason why chelation is bad for people who don't have acute, immediate heavy-metal poisoning.).

As I understand it.

Is there a theory explaining how it unbinds itself and becomes lipophilic again>

floortime play therapy has been amazing

That makes me happy to hear.

(No reason. I just think it's an appealing model.)

@ meg: Could you provide a link to that research that your colleague referred to about aluminum building in infant's bodies who have been on IV hydration?

You should have done some research on aluminum adjuvants, here at the Children's Hospital of Philadelphia-Vaccine Education Center:

http://www.chop.edu/export/download/pdfs/articles/vaccine-education-cen…

Good grief meg. You're feeding your child "raw milk and cheese"?

http://www.cdc.gov/foodsafety/rawmilk/raw-milk-questions-and-answers.ht…

Meg, speaking as a health department employee, do not, do not, do NOT feed your child raw milk. And if you tell me "he's never gotten sick" my reply will be "Yet."

Looks to me as if Wakefield may fear what he wishes for. The Texas anti-slapp law was last year made more beneficial to respondents.

This postdates the suit. I suspect that there would have been more activity if it carried any force here besides what the court feels like making of the development.

I say puzzling over this totes got at least a billable hour, though.

Good grief meg. You’re feeding your child “raw milk and cheese”?

Has a domestic, organic, cruelty-free, artisanal casu marzu operation sprung up in the U.S. yet?

Gee thanks Narad, for the link to maggot cheese.

It seems wicked paleo.

If "meg" had the financial resources, she would try HBOT and she's already dosing her child with coconut oil (because her child has allergic rashes to "cats, dog and outdoor (sic)".

It's a knowledgeable group of biomedical parents and she knows which tests are valid (heavy metals toxicities) and which are "woo woo":

There is a whole world w these parents that most are unaware of. And its not very woo woo (for the most part. There are some exceptions. But when I called out one mom for Nutrition Response Testing, I got unexpected support from some of the other moms, so they are not all on that bandwagon. Same with homeopathy.)

http://www.thenutritionalhealingcenter.com/services/nutrition-response-…

It looks like we have a drive-by poster here.

They have all gotten genetic tests done showing mthfr variation (among many others). This gene ultimately affects glutathione, the primary detoxer for heavy metals.

And:

Their kids have been genetically tested for common autism genes, the parents create their own plan based of the results (ie one of the genes compromises folic acid, so they supplement, another affects themethyl pathway, so they take several steps to address that).

With which, folic acid or glutathione? (Wait, got it.) Since when is MTHFR a "common autism gene"? Why the f*ck are the only mentions of the "Parental Global Impressions-Revised" tool that I'm finding from people touting supplements?

@ ann

Is there a theory explaining how it unbinds itself and becomes lipophilic again

Actually, I believe complexation could be a reversible reaction, in the proper conditions.
I would tentatively suggest competition as such proper conditions: the loaded chelatant encounters other metals and the chelated metal is exchanged for another one.
It becomes a question of the relative concentrations of the metal candidates in presence and of their individual affinity for the chelating agent, which varies from metal to metal.
Note that means that the higher your concentration of heavy metals (or whatever), the higher the likeliness of them being picked up and eliminated by chelating agents. So a failure to chelate heavy metals may mean that you don't have many to catch in the first place.

That being said, this in the context of a single ligand-chelator pair. In the context of repeatedly injecting big amounts of chelating agents, in addition to the body own processes of heavy metal excretion... Maybe this chelator molecule dropped (or merely disregarded) a mercury atom for a calcium or an iron, but it has a few billions sisters following it. One of them is bound to pick it up and carry it all the way to the bladder.
Maybe after depleting the body of free calcium ions.

By Helianthus (not verified) on 02 Jun 2014 #permalink

Since when is MTHFR a “common autism gene”?

As far as I can see, it isn't. Even the "MTHFR explained" page on that supplement-pitching site you linked to doesn't list it.

Probably because of my mis-spent youth as one of Uncle Sam's Misguided Children, but only one word comes to mind when I read the acronym "MTHFR."

Ok...
As far as the raw milk and cheese thing, my whole family has been doing it for nearly three years and get it from a local, clean source. We all had improved digestion and most of us get an upset stomach with pasteurized milk now. If I notice sustained improvement in more than one family member and it makes sense to me, Im going to do it.

As far as the IV info:
http://www.nejm.org/doi/full/10.1056/NEJM199705293362203

http://www.nejm.org/doi/full/10.1056/NEJM198505233122101

http://www.sciencedirect.com/science/article/pii/S0899900799001240

The last one I found, and also another in which they studied bones of preemies as older kids and found incresed risk of bone weakness and fracture, but I cant seem to find it now.

I honestly havent looked much at the websites that claim to explain mthfr, only a few studies of the prevalence of it and glutathione/oxidative stress/infections/deficiencies,etc to see if those are real problems and if they cant help me unravel my own son's health issues. Since he is not autistic, the genes havent been a huge source of interest. However, he has exhibited several "autistic" traits and has more in common with some asd kids than fellow adhd/spd ones.

http://www.ncbi.nlm.nih.gov/m/pubmed/23653228/
http://www.nature.com/tp/journal/v2/n7/abs/tp201261a.html
http://m.ajcn.nutrition.org/content/80/6/1611.short

Im having trouble following your comment in which you call me a drive by poster, lilady. I was acknowledging the massive BS factor in "nutrition response testing". And what exactly was your point in mentioning the coconut oil and hbot?

I admit I know next to nothing about chelating, ann. I have been looking into it only for aluminum but havent found a system that works for aluminum. Most only work for other metals (supposedly, of course), so I havent investigated much further into that. I want to have a bone test first before I lose my mind trying to figure that out.

From reading the convos between these other parents, it seems they think the pathway to excrete the metals is compromised, so perhaps the bonding agent either latches onto something else or they both just keep circulating. I will ask that question of them.

Narad I should have said "a common gene in a subgroup of autistic people". Athough from what I found, it is a common gene to have a variant of away from autism, as well.

http://ghr.nlm.nih.gov/gene/MTHFR

@Meg - these parents are using Industrial-Grade chelating agents on their children....a process that has killed other children. There is no valid science, outside of massive heavy metal poisoning (and where is this massive amount of heavy metals coming from, Meg?) that chelating is a treatment for anything related to autism.

These parents are doing nothing but further damaging their children.....

Remember, Meg, the easiest way to reduce aluminum in your kids is to feed them food that has not been grown in soil that contains aluminum minerals. That is the biggest source of aluminum in the body.

Unfortunately all soil contain feldspars, which have aluminum. Mostly because it is the most common metal element on this planet's crust. And it is definitely not a "heavy" metal.

So your options are to either grow your own hydroponically, making sure there is nothing made of aluminum... or to just stop feeding your kids.

Or you could go take a chemistry and/or biology class at your local community center, so you won't get bamboozled into looking at worthless, and sometimes dangerous, "treatments" for non-issues.

And don't ever believe a "doctor" that is pushing a treatment before making a diagnosis (or driving the diagnosis to a particular treatment that they are making money off of - especially one not supported by any real science).

There's aluminum in breast milk and in infant formulas and trace amounts of aluminum are found in human bones. Those links you provided which you think are proof that aluminum in IV fluids has a deleterious effect on bone growth/bone formation and neurological status, do not prove anything about aluminum toxicity in healthy premature or term newborns who have not been diagnosed with faulty renal clearance.

All the special snowflakes in your family get upset stomachs with pasteurized milk and milk products, yet you willingly expose your child and other family members to the dangerous pathogens contained in raw milk and raw milk products.

Tell us what you think the benefits of HBOT treatments are for your child.

Which doctor is ordering all these tests for your child and which laboratory is performing all these tests for heavy metal toxicities. Please provide us with the results of those tests.

Those links you provided which you think are proof that aluminum in IV fluids, do not prove anything about aluminum toxicity in healthy premature or term newborns.

Is your child up to date with age-appropriate vaccinations, according to the CDC/AAP Recommended Childhood Vaccine Schedule?

"All the special snowflakes in your family get upset stomachs with pasteurized milk and milk products" ... that they've been told are icky horrible pasteurized milk and milk products that will make them ill and possibly kill them.

@ Meg

I have been looking into it only for aluminum but havent found a system that works for aluminum.

To start with, be sure if you are talking about metal aluminium or one or another form of aluminium oxides. Aluminium hydroxide is the one used as adjuvant in vaccine or as anti-acid, potassium aluminium sulfate is better known as alum and is present in a number of shampoo and skin care products. And there are a few more.

There are not exactly the same things. And I don't think you can find chelating agents which will be good for catching both the metal form and any of the oxide form.

By Helianthus (not verified) on 03 Jun 2014 #permalink

Not only that, but chelating will also strip out "all" effected metals from the body, including leeching necessary minerals from bones as well - this isn't a good thing.....it can have huge detrimental impacts to a child's body.

Helianthus: "To start with, be sure if you are talking about metal aluminium or one or another form of aluminium oxides"

Some aluminum oxides are called "sapphires" and "rubies."

Meg, if you want to get rid of all aluminum, just send all of your sapphires and rubies to me.

I wont chelate my son until I have proof from bone tests that it is a problem (aluminum primarily accumulates in bones, then brain).

Precisely what sort of "bone tests" are you contemplating? Laying some action with these on the pelvis?

The kinetics of aluminum adjuvants are not exactly a completely unknown quantity"

"It is of interest that following injection of adjuvant containing 0.85 mg Al the normal plasma concentration of Al in rabbits (30 ng Al ml⁻¹) only rose approximately 2 ng Al ml⁻¹ during the experiment. Flarend [75] calculated that a similar Al dose injected into humans, provided similar clearing kinetics existed, would lead to an estimated increase of serum Al of only 0.04 ng Al ml⁻¹, which is equal to 0.8% above the normal level of approximately 5 ng Al ml⁻¹....

"75. Flarend RE, Hem SL, White JL et al. In vivo absorption of aluminium containing vaccines using ²⁶Al. Vaccine 1997; 15: 1314–18."

The reason why this required the use of rabbits is left as an exercise for the reader.

And it is an immediate, drastic improvement right after chelation.

Which is why biomed kooks commonly do it for years at a time, of course.

As far as the raw milk and cheese thing, my whole family has been doing it for nearly three years and get it from a local, clean source. We all had improved digestion and most of us get an upset stomach with pasteurized milk now. If I notice sustained improvement in more than one family member and it makes sense to me, Im going to do it.

But if they get undulant fever...

http://en.wikipedia.org/wiki/Undulant_fever#Brucellosis_in_humans

...you'll have to notice them not improve forever.

And that -- or something very like it -- might happen. There's no such thing as keeping a dairy farm so clean that it's bacteria-free.

That's a hell of a risk to take for improved digestiion, especially since there are other routes to the same destination.

WRT mthfr --

The first study you linked above is the one I referred to earlier:

In addition, we stratified the patient population based on whether they were from a country with food fortification of folic acid or not. The meta-analysis showed that the C677T polymorphism was found to be associated with ASD only in children from countries without food fortification. Our study indicated that the MTHFR C677T polymorphism contributes to increased ASD risk, and periconceptional folic acid may reduce ASD risk in those with MTHFR 677C>T polymorphism.

So it would be quite something if there was a cluster of mthfr-variant autism cases anywhere in the United States.

Besides which, some form of mthfr deficiency is too common to signify much. By ethnic group, the rates are:

Hispanic American48%
Caucasian American45%
Japanese45%
German37%
Asian29%
African American24%
Sub-Saharan African12%

_________________

WRT chelation --

It's potentially dangerous and has no therapeutic/health benefits for behavioral/developmental purposes.

It always creeps me out when I see people saying chelation improved their children It can't do anything except make them weaker.

But I guess that looks like improvement to some people.

It's sad and frightening.

It always creeps me out when I see people saying chelation improved their children It can’t do anything except make them weaker.

It can kill or cause brain damage too. That's something.

Very true.

My point was poorly phrased.

What I meant was:

Assuming that they'd notice it if their children were dead; that they wouldn't mistake brain damage for improvement; and that -- in short -- there were no consequences except for being left sick and depleted by the chelation agent.

Or....You know. It can't have done better than make them weaker.

It can definitely do worse. Seizures. Death. All kinds of worse.

But when I called out one mom for Nutrition Response Testing, I got unexpected support from some of the other moms, so they are not all on that bandwagon.

^^That's a World Institute of Scientology Enterprises concern, via its parent company Ulan Nutritional Systems.

FYI

(Unsurprisingly.. They more or less use an e-meter to measure the response, sounds like.)

As far as the raw milk and cheese thing, my whole family has been doing it for nearly three years and get it from a local, clean source. We all had improved digestion and most of us get an upset stomach with pasteurized milk now.

This is begging the question in the proper sense.

1. Why did you do it in the first place?

To wit:

If I notice sustained improvement in more than one family member and it makes sense to me, Im going to do it.

You were already "doing it."

2. Rather than its "making sense," have you tried a blind trial? It's not as though home pasteurization is some sort of elaborate process. You just have to get someone else to do it.

The simple fact of the matter is that raw-milk sloganeering is about as well thought out as Amish objections to septic-tank permits.

Aluminum coming through the filter of the gut and going into an IV are two very different things. The first two studies I posted found elevated levels of aluminum in preemies and suggesting it could cause damage. The last one was the only one that looked solely at the IV solution itself, and yes, that is not proof of how it acts in the body, just proof it is there and in higher levels than is deemed safe.

I will certainly take a much deeper look into chelation if the bone test comes back with a high amount of anything. It is not something I am personally sold on, but to see so many parents say their kids stopped self destructive behavior, started making eye contact, started speaking, etc after chelating, it is hard to ignore. The vast majority claim significant benefits.

I did the raw milk because for a few reasons. My dad worked on a dairy farm for a while when I was a kid and always brought home fresh raw milk. I was lactose intolerant as a kid but handled the raw milk just fine. My oldest was having issues w milk, but had such a poor, picky appetite that I didnt feel comfortable eliminating milk entirely. I was scared he would drop even more weight. I read up about how the cooked protein is harder to digest for many people, about the things that are destroyed through pastuerization, and figured it was worth a try. Have not regretted it since. I will admit I made the change at the same time I made the switch to a completely organic diet, so some benefits may have been due to that. I usually try to do things one at a time to avoid confusion.

Ann, I did see that and mentioned something in a thread to them and will see what they say. From what I understand, a different gene also affects their folate, and for some reason makes them extremely sensitive to folic acid, but they seem to be ok with folinic acid. Many have been tested genetically and also have an ASD diagnosis, so it is possible to have it and have asd in a country w fortified food.

I have seen stuff that doesnt make a lot of sense to me, but there are also many very smart mothers who have been very helpful and have had a lot of success, so again it is hard to blow off. It is a diverse group. There is a molecular biologist, dr, and nurses along with women who believe in the bogus NRT and crap like it. And they go into so much depth trying to figure it all out. Biofilms, bacteria ('good' and 'bad'), parasites (good and bad-the molecular biologist claims she fixed her family's many severe allergies with 'good' worms and immunotherapy. Had a pretty compelling explaination which isbalso covered in a book called Bugs,Bowels, and Behavior), metals, food, oxilates, additives, allergies, lyme, pandas, deficiencies, yeast, GAPS diet...those are all things commonly talked about.

If these women are really offbase, then someone besides standard medicine needs to come forward with some good answers. Because these parents are having far more luck with the path they are on than they did with the standard system. Myself too. I cant take seriously a medical industry that was going to give me ritalin or psych meds for 'ADHD' or a 'mood disorder' that have almost completely gone away after testing for allergies, changing diet, and using The Listening Program auditory therapy. Still has sensory processing issues, but those have improved. He was also diagnosed w GERD, but ended up having too low of stomach acid and not too high, which I learned mostly on my own because I knew that dx couldnt be correct. With myself and mother, I have seen drugs that were supposed to help with depression and anxiety acually make it worse. Nearly everything helpful I have found for myself or kids has been away from and in conflict with mainstream medicine. My husband is a highly experienced and respected nurse who has similar views as me because he has been in it so long and has seen it behind the scenes. I realize there is a lot of BS out there in the alternative health arena and I would love nothing more than to punch the knowingly dishonest 'practitioners' rightin the face. But I also know there is nowhere else to turn for many people. I understand why they stray. And many of them seem to make a lot of sense and a lot of improvement. I have seen improvement by doing the opposite of what some docs have told me to do. If there were more trustworthy people and entities in all areas of healthcare and money were not the primary incentive for many in both camps, these would probably be non issues that we would have solved by now.

I will admit that you people are much more civil than most who have your positions in relation to these topics, but please realize you have almost all been rude in one way or another. If you really think mothers like me are such a huge problem and need to see the light, consider treating us with respect and decency.

@Meg - autism is about developmental delay, not developmental stasis...it is quite possible that these children would have improved on their own, without any of the "biomedical" treatments that they have been subjected too - these parents are also "seeing what they want to see"

We are more likely to kisten during civil discourse. We have been dealing with the life or death of our kids and have obviously been doing the best we can with what we know. We live with these kids every day. We actually know them. Its not some debate to find a side on. It is our kids health that is our main concern. So even if every single one of us is completely wrong about everything, which I highly doubt, as improvements have been common, we are all trying our best to improve our kid's health and dont deserve all the shitty little remarks. Civil discourse.

Lawrence I have two autistic kids in my family (not my kids) who do everything by the book of mainstream medicine and get worse in almost every way. Both are nearly teenagers and were dx very young. Not to say its proof one way or another, but much of the time they dont get better. My husband often cares for adults w autism who have gotten worse in many ways all throughout their lives. There is no trend that I know of that would support the idea that these kids are randomly getting better.

Al(OH)3 is only sparingly soluble at a biologically relevant pH, ergo there isn't much Al3+ roaming around from the vaccine to induce the Fenton cycle and oxidative stress (or bind to bone).

As far as the Al(OH)3 traveling - yeah it's filtered out by the kidneys as the adjuvant makes its way to the bloodstream.

Meg, will you kindly either a) identify which part of my patient explanation to you about evidence in the form of "affirming the consequent" and why said evidence was in fact very unreliable was "rude" or "shitty little remarks", or b) stop blowing it off which is in itself quite rude?

By Antaeus Feldspar (not verified) on 04 Jun 2014 #permalink

I will admit that you people are much more civil than most who have your positions in relation to these topics, but please realize you have almost all been rude in one way or another. If you really think mothers like me are such a huge problem and need to see the light, consider treating us with respect and decency.

This is a call for validation of tossing out strings of words that have clearly not been thought about in the slightest, ignoring plain explanations of why preformed conclusions don't make any sense, and long-winded evasiveness, not a stance of actually seeking information and critically evaluating flaws in the position that one is advancing.

"The gods of the valley are not the gods of the hills."

I know, I must have been very rude in saying that aluminum is ubiquitous in the environment because it is the most common metal element on this planet's crust. It was a way to tell you that the issue is more complicated that you think.

And there is no reason to chelate for aluminum, since it is very very common so our bodies have learned to deal with it. Chelating potions are much more dangerous than any vaccine, or aluminum oxide.

But don't eat your sapphires and rubies, aluminum oxide is very hard and you could break your teeth!

Oh, wait, is humor rude?

I will certainly take a much deeper look into chelation if the bone test comes back with a high amount of anything.

Again, what kind of "bone test"?

I did the raw milk because for a few reasons. My dad worked on a dairy farm for a while when I was a kid and always brought home fresh raw milk. I was lactose intolerant as a kid but handled the raw milk just fine.

Having increased lactose tolerance over time, BTW, is the opposite of how things normally work. Now, since when does raw milk not contain lactose?

I read up about how the cooked protein is harder to digest for many people

Please define "harder to digest" and identify specific protein modifications of concern. Why is ultra-high-temperature pasteurized milk processed more rapidly?

about the things that are destroyed through pastuerization

Please be specific and quantitative.

I will admit I made the change at the same time I made the switch to a completely organic diet, so some benefits may have been due to that.

How, specifically, could eating organic food introduce confounders?

From what I understand, a different gene also affects their folate, and for some reason makes them extremely sensitive to folic acid, but they seem to be ok with folinic acid.

What sort of "extreme sensitivity" to folic acid is created by reduced activity of methylenetetrahydrofolate reductase? Please supply a mechanism from a reputable source, preferably specifying quantitative thresholds. This specifically excludes Bastyr alum "Dr." Ben Lynch.

Note that NCT 1602016 is not relevant to the question.

Meg,

If you really think mothers like me are such a huge problem and need to see the light, consider treating us with respect and decency.

You need to understand that many of us are familiar with what you are doing (and what you are considering doing) to your child, and regard it as child abuse. It may be well-intentioned, but I personally consider subjecting a child to raw milk and chelation unequivocally to be child abuse - it exposes them to substantial risks with no proven benefits. I find it hard to feel respect towards someone who is arrogant enough to reject the advice of medical experts and use their child as a lab rat.

As others have pointed out, many (but not all) autistic individuals improve over time, some to such an extent that they lose their diagnosis. Your statement that, "There is no trend that I know of that would support the idea that these kids are randomly getting better" is simply wrong. Development in these children occurs in fits and starts, making it very easy to misinterpet any changes as the result of whatever intervention you have been trying. It's a classic way that people fool themselves into believing that anything from homeopathy to bloodletting is effective. That's why we have randomized clinical trials, as it is impossible to figure out if something is safe and effective the way you are attempting to do.

By Krebiozen (not verified) on 04 Jun 2014 #permalink

@Meg - "randomly" getting better has nothing to do with it. It is a part of autism that children do progress - in fits and starts, but they do tend to develop over time, and as Kreb pointed out, progressing to the point where they would no longer be considered autistic.

Of course, the spectrum is now quite large - so you will find kids on all different parts of it (some severely affected, others hardly at all) - so these other parents trying to find that "single-source" or cause or better yet, deciding they have found the cause, when modern medical science has not (to this point) is ludicrous and points to them being mislead by charlatans looking to sell them something.

Meg: I realize there is a lot of BS out there in the alternative health arena and I would love nothing more than to punch the knowingly dishonest ‘practitioners’ rightin the face.

Are there honest practitioners of alternative medicine out there, or are you the most naive person I've ever met? I'm leaning toward the latter. The ones who make news are nothing more than snake oil salesman and women.

As for our tones, well, excuse me, but I find it hard to be polite to people who abuse and belittle their children. I tend to be blisteringly insulting to people who think adhd/add are 'diseases' or 'mental disorders' or plain don't exist. And I really dislike people who persist in pigheaded ignorance.

In our day jobs, most of us here have to tolerate fools. Here we don't, and most of you biomeddlers have long since exhausted everyone's patience. Pearl clutching gets you nowhere.

Aluminum has been around on the Earth for half-past forever. If it didn't poison our ancestors, it's probably not gonna poison your kids.

By Politicalguineapig (not verified) on 04 Jun 2014 #permalink

I hope nothing I've written read as uncivil. None of it was intended that way. Personally, I'm in favor of conversations that include the open exchange of ideas and information among people of diverse opinion and/or background.

Or, as some might call it "disagreement." It's not always enjoyable. But it's got its civic virtues.

So.

I don't intend this to be rude. I take it for granted that you already know you're not beholden to my opinion, simply because I expressed it. But fwiw, I wouldn't say it lightly. Among other things, I'm kind of a serious person when it comes to words. And I'm about to use strong words:

I will certainly take a much deeper look into chelation if the bone test comes back with a high amount of anything.

^^What you're saying there is "I'd consider subjecting my child to torture if it met the narrative criteria that make me feel good about myself and the world."

And that would be a bad, irresponsible, and self-indulgent act, in my opinion.

But I'm pretty sure that you'll reach the same conclusion when you research it, if it comes to that. It's pretty unambiguous.

Many have been tested genetically and also have an ASD diagnosis, so it is possible to have it and have asd in a country w fortified food.

It's highly possible to have both an mthfr polymorphism and an ASD diagnosis in a country with fortified food, because both are very common.

What's unlikely is that there's a cluster of people in the United States who have the C677T polymorphism in association with an ASD diagnosis. Because that doesn't happen among adequately nourished populations.

And that's the only mthfr polymorphism that's associated with ASDs.

With myself and mother, I have seen drugs that were supposed to help with depression and anxiety acually make it worse.

That happens quite a bit with drugs for depression. They're overprescribed and/or wrongly prescribed by doctors who don't know much about them with mind-boggling frequency.

Despite which, I don't like to see antidepressants (or psychotropic meds generally, ftm) bashed or blamed or demonized. Some people need to take psychiatric medications in order to function/survive. That's not their fault, and neither are the overprescribing habits of some, or any, or even all doctors.

And they have a hard enough row to hoe without the additional stigma.

I mean....It's not like I'm cheerleading for psychotropic meds. They're problematic for most people who take them even when they're beneficial. There should be better options.

There frequently aren't, though.

Same goes for ADHD meds, more or less. A lot depends on individual circumstance.

I don't know what anti-anxiety drugs made the anxiety worse. The ones I know about have their downsides, too, though. FWIW.

WRT the randomly getting better --

What Lawrence said. Anecdotal evidence really doesn't mean a whole lot in this context It's entirely possible that the kids improve because the process of seeking and getting treatment alters the family dynamic in some favorable way. Or for any reason. Or none.

It may be well-intentioned, but I personally consider subjecting a child to raw milk and chelation unequivocally to be child abuse – it exposes them to substantial risks with no proven benefits.

I wouldn't put those two things on a par, personally. And I wouldn't call the raw milk abusive, just foolishly dangerous.

Chelation is over the line, though.

Speaking for myself only, obvs.

I tend to be blisteringly insulting to people who think adhd/add are ‘diseases’ or ‘mental disorders’ or plain don’t exist.

You should forgive people who think ADHD is a mental disorder. For one thing, it's coded "314" in the Diagnostic and Statistical Manual of 'em. And for another, when they go to the NIMH website, they find themselves reading this:

Attention Deficit Hyperactivity Disorder, ADHD, is one of the most common mental disorders that develop in children.

So you can see how they get the idea that that's what it is.

Ann: Okay, that's legitimate, but I meant people like the banned Greg, who use 'mental disorders' as code for 'retarded.' I think that's the way Meg's using it too.

Personally, I'm not fond of most medications for depression and add. Most didn't work for me, and while I should be taking add meds, I'm terrified of my insurance company noticing and just plain don't want to.

By Politicalguineapig (not verified) on 04 Jun 2014 #permalink

They mostly don't work for most people.

I'm not a fan. I just don't like to see them demonized for merely existing. They work better than nothing for a few.

...

Honestly, the problem is the huge inadequacy of healthcare services and/or delivery and/or other accommodations for mental disorders -- by which I mean simply "the grab bag of conditions thus characterized."

Limiting it to meds understates that.

while I should be taking add meds, I’m terrified of my insurance company noticing and just plain don’t want to

Noticing what? Not filling a prescription?

@ ann

I wouldn’t call the raw milk abusive, just foolishly dangerous.

Seconded.

Now, when people say they are lactose intolerant but can drink raw milk, I have some doubt. I would like to understand how the lactose in raw milk is suddenly tolerated because the milk hasn't been sterilized.
I'm also pondering Meg's assertion that "the cooked protein is harder to digest for many people". But I'm not an expert in nutrition, so what do I know?
I'm even more skeptical of claims that pasteurized milk is a trigger for allergies and other chronic illnesses (or rather, that switching to raw milk makes all of these illnesses disappear or prevents them altogether).

But aside from this, whatever floats your boat, people.

By Helianthus (not verified) on 04 Jun 2014 #permalink

ann,

I wouldn’t call the raw milk abusive, just foolishly dangerous.

I take your point, and to some extent I am using hyperbole to make a point. However, the CDC definition of child abuse is, "as any act or series of acts of commission or omission by a parent or other caregiver that results in harm, potential for harm, or threat of harm to a child". I'd say that giving a child raw milk fits that definition, since it substantially increases the child's risk of illness, hospitalization and death.

By Krebiozen (not verified) on 05 Jun 2014 #permalink

Narad: I don't want the insurance companies noticing that I exist. A physical is about the upper level of what they'll pay for; when I was on the meds, I was on my parents insurance and not a legal adult. Supposedly, people can't get kicked off anymore, but the ACA won't last past the next election, so it's foolhardy to risk my insurance coverage.

By Politicalguineapig (not verified) on 05 Jun 2014 #permalink

@Kreblozen --

I think the subjective experience of the child counts -- ie, it matters whether or not the acts of commission or omission are likely to make the child feel harmed, threatened or unprotected.

But point taken back atcha. I was really just speaking for myself.