Autism quackery in my second hometown

In case anyone is wondering about the respectable sounding American Medical Autism Board, you don't even need to go beyond it's home page to see that it's an organization established to push autism biomedical quackary.

http://www.americanmedicalautismboard.com/

Whatever sort of name is "Gannon"? Got the poor kid off to a ropey start right there.

If I wasn't going to be on vacation in Bermuda, I'd make the trip out home just to try and bring some sanity to the insanity that will certainly be spouted. Bah! Michigan has enough problems without this nuttiness.

Maybe I'll see if I can talk my evil twin Zelda (aka my best friend from high school) into going, since she still lives in the state.

Wow, a mannequin-looking milf(-), a health food store, and a bunch of parasitic quacks lying to desperate parents. Maybe as punishment they could be forced to watch the 2012 trailer... until 2012.

I just saw a banner ad for this on another site and had to share it:
http://www.soundsofpertussis.com/
Seems like some celebrities haven't drunk the kool-aid yet. There's still hope.

I was just reading the TIME magazine article. Autism Spectrum rates appeat to be the same for 70 year olds as 10 year olds, so much for recent epidemic. Do you know details on that study orac?

Hi rb
you can download the report here.

It is the first study of its kind and I am sure there will be some serious caveats attached to its conclusions. But it is a collaboration by some of the top people in autism research in the UK will be taken seriously by our policy makers.

The link seems to have disappeared from my comment. Here it is again.
http://www.ic.nhs.uk/statistics-and-data-collections/mental-health/ment…

What I found most interesting and disturbing about this video is how this woman apparently became an autism expert in just a weekend online. As if she was reading up on how to build a DIY deck in her back yard.

To me, this comes back to Nick Carr and "Is Google Making Us Stupid?"

http://www.theatlantic.com/doc/200807/google

I'm beginning to wonder, are there any autism advocacy organizations that put science first and avoid the woo-ness of places like GenRes?

Do you know details on that study orac?

Let me answer that. The study has been discussed over at LB/RB. The last post is 1 in 100 adults are autistic. There are 2 more, but if I link them, the comment will get spam-trapped.

This biomed whack-a-mole game is exhausting. Yet it's clearly important for science based MDs to to point and say "quack" each time it arises.

These quacks have become so slick with their "board certification," pseudo-peer reviewed journals, national charities, fake research institutes, and fake laboratories. Anything is possible once one learns how to use the quack miranda warning. The public --and even other physicians-- are absolutely going to be taken in by this nonsense.

So thanks, Orac, for the heads up about this event.

I'm beginning to wonder, are there any autism advocacy organizations that put science first and avoid the woo-ness of places like GenRes?

The Autism Science Foundation probably comes close to that. It's interesting, though, that they haven't mentioned the adult prevalence finding (the first of its kind) in their front page, whereas they do mention a recent ordinary (and methodologically poor) count of autistic children in the US.

Autism organizations are typically run by parents, and focus almost exclusively on children, to their own detriment I might add.

The National Autism Society (NAS) of the UK is pretty good at not being woo-friendly. But it's not exactly a scientific organization. I like the fact that they issued a statement on the adult prevalence finding.

@Joseph

Thanks for the info. I'm taking a look at Autism Science Foundation's web site, now. So far, it looks pretty good.

You are SO irrelevant.....

Documented medical research linking gluten to neurological disorders indeed exists.

For those visiting this blog who have an interest in documented medical research demonstrating children recovering from mental disorders because they were misdiagnosed with one disease when they actually had celiac disease, see the links below. Celiac disease has an estimated prevalence of 1 in 100, making it more common than breast cancer, autism or type 1 diabetes, yet it is properly diagnosed only 5% of the time. Doctors will almost never look for celiac disease if a patient has no gastrointestinal issues.

Here is a medical case report of a boy (age 5) who recovered from "autism" when physicians finally realized he had celiac disease and treated his malnutrition, thus providing his brain with the nutrients it needed to function properly. He had been misdiagnosed with severe autism at an autism specialty clinic. Taken from Journal of Child Neurology - a highly respected medical journal.

http://blog.glutenfreeworks.com/2009/08/06/can-celiac-disease-be-mistak…

Here are two amazing videos of another little boy (age 3), who was regressing and had been misdiagnosed with a seizure disorder by a neurologist. After a serendipitous series of events, he was properly diagnosed with celiac disease and made a full recovery.

http://blog.glutenfreeworks.com/2009/05/08/can-celiac-disease-make-your…

Medical studies in the 1970s linked gluten to schizophrenia IN SUSCEPTIBLE PERSONS. That is an important qualifier because only certain people are sensitive to gluten. Two weeks on the gluten-free diet (wheat, barley, rye and oats are removed) and they recovered. Three days after reintroduction of gluten and they exhibited symptoms. Ask yourself why the "experts" in schizophrenia and other neurological disorders discount the concepts of diet affecting the mind and dietary treatment. Then ask whether it makes more sense to label a patient as incurable and spend tens of thousands of dollars using medicines and occupational therapy every year or to RUN A $100 BLOOD TEST (AGA-IGA, AGA-IGG, TTG-IGA) AND TRY A DIETARY CHANGE FOR 3 WEEKS.

Be careful to discount anecdotal evidence that conflicts with "expert" opinion. A) Expert opinion is just that - opinion. B) Experts admit they have no idea what causes autism. The only reason they offer to discount dietary intervention is that there have never been any large studies demonstrating it works. C) Much peer reviewed medical research in the United States is paid for by pharmaceutical companies - who have no interest in dietary intervention. Drugs to treat mental disorders make up 2 of the top 10 selling drugs. http://en.wikipedia.org/wiki/List_of_bestselling_drugs

For more information about how gluten damages the body, go to http://www.glutenfreeworks.com. For a medical manual that will help you understand celiac disease and determine which nutrient deficiencies are causing your symptoms see http://www.recognizingceliacdisease. It has 17 pages of neurological disorders, everything from anxiety to depression to schizophrenia to epilepsy. This book is helping people reclaim their lives and contains 100% evidence based research in laymans terms. Professors and physicians at Harvard, Columbia, U. Chicago and others recommend it for patients and use it themselves.

[ORAC NOTE: I realize this is comment spam for http://www.glutenfreeworks.com, but I let it through anyway because I thought my readers might want to have a bit of fun.]

@Mary Hirzel

Heh.

Apparently I'm relevant enough for you to have read and then declared my "irrelevance."

Orac, you have a troll from outside anti-vax. Congratulations...I guess.

Orac,
I assume Mary Hirzel means that science, the cause celeb you espouse, is irrelevant too. I sure hope she feels that way when her kid gets whooping cough or polio. Fools are everywhere.

Gannon?

She named her kid... Gannon?

Okay, when the kids get together on the playground and pretend to be Zelda characters, guess who never, ever gets to be Link.

One thing that caught my eye: it's entirely possible that her son is indeed gluten-intolerant, and that by changing his diet, she's made him far more comfortable. That has nothing to do with his autism, of course. But I hope she's done him at least a little good in the midst of all this quackery.

@#20 - Jeff Read

If we had played The Legend of Zelda when I was a kid I would have rather been Ganon. I always thought the Tri-force of Power was superior to the Tri-force of Wisdom. Now that I'm older I don't but back then I did!

@Dave

One thing that caught my eye: it's entirely possible that her son is indeed gluten-intolerant, and that by changing his diet, she's made him far more comfortable.

Yep. A possibility, though proper diagnosis of such would be the preferable way to go, so as not to eliminate perfectly fine (and nutritious) foods from his diet.

Of note, I read on Autism Science Foundation's site (thanks, Joseph!) about a recent study out of the Mayo Clinic finding that digestive issues are not significantly different in autistic vs. non-autistic children, though autistic kids tend to be pickier eaters and more prone to constipation.

Hi Dave -

One thing that caught my eye: it's entirely possible that her son is indeed gluten-intolerant, and that by changing his diet, she's made him far more comfortable. That has nothing to do with his autism, of course. But I hope she's done him at least a little good in the midst of all this quackery.

Indeed, you might be interested in knowing that evidence indicates that children with autism have more robust immunological responses to proteins in wheat and dairy when compared to their non diagnosed peers.

Evaluation of an association between gastrointestinal symptoms and cytokine production against common dietary proteins in children with autism spectrum disorders

Innate immunity associated with inflammatory responses and cytokine production against common dietary proteins in patients with autism spectrum disorder

Similarly, two studies have found increased levels of antibodies to gluten/casein in this subject group.

Higher Plasma Concentration of Food-Specific Antibodies in Persons With Autistic Disorder in Comparison to Their Siblings

IgA antibodies in Rett syndrome

It isn't a coincidence that so many parents of children with autism report that their childrens behavior, and in some instances, cognition, improves on restriction diets. Of particular interest, to me, is that non idiopathic autism (i.e., Rhetts) shows similar immunologic profiles; which would indicate that it isn't that autism or caesin cause autism, but rather, having autism predisposes you have problems with food intolerances.

- pD

Mayo Clinic finding that digestive issues are not significantly different in autistic vs. non-autistic children, though autistic kids tend to be pickier eaters and more prone to constipation.

Also discussed recently at LB/RB.

Personally I was surprised that only 25% of autistic children are picky eaters, and only 16% of non-autistic children are picky eaters.

The Mayo Clinic study involved record reviews. It is highly likely that selectivity would be more often not reported than constipation. For what that's worth.

I've always found it kind of funny that the MSDS for sodium chloride is one of the longest we have in the lab, but I never thought anyone would ever seriously consider it dangerous!

Todd W wrote;
"...a recent study out of the Mayo Clinic finding that digestive issues are not significantly different in autistic vs. non-autistic children, though autistic kids tend to be pickier eaters and more prone to constipation."

Now that is interesting. I would from experience believe that not to be necessarily true. However I also realize Orac's perspective on experience versus statistical analysis. I need to read that study.

JB wrote;
"Personally I was surprised that only 25% of autistic children are picky eaters, and only 16% of non-autistic children are picky eaters."

I would agree with JB. I would have expected a higher percentage of the "picky eater" in autistic children

Picky eating habits are one of the classic signs of autistic tendencies (issues with food textures etc.)
The diet issue as well as, "he only eats baloney sandwiches" comes up quite a bit with some parents of autistic children. Many mothers (majority of fathers tend to be passive in the childs development issues) are quite adamant about the gluton diet being the "answer" as evidenced quite a few times by some parental responses to "gastrointestinal issues as a symptom" on this site in the past.
I have seen a certain level of experimentation done by some parents in an attempt to illicit a change in thier childs autistic symptoms.

I would agree with JB. I would have expected a higher percentage of the "picky eater" in autistic children

I suspect JB's surprise is more to the fact that only 1/6 of non-autistic children are picky eaters.

I suspect it has to do with the fact that, in order to actually study something like this, you have to create objective standards for what you mean by "picky eating." I'm sure every parent can provide stories about how their kid wouldn't eat this or wouldn't eat that, but most of the times such things don't rise to the level of "picky."

@Uncle Dave

Now that is interesting. I would from experience believe that not to be necessarily true. However I also realize Orac's perspective on experience versus statistical analysis. I need to read that study.

Yeah. I need to give the study a closer read, as well, but thought the preliminary summary at ASF was intriguing. The higher incidence of constipation I was aware of from personal (anecdotal) experience, but the rest I hadn't noticed.

In my house, 100% of autistic children are picky eaters, as are 100% of non-autistic children. Please don't call me JB, though. Understandably, I was somewhat disturbed by that.

Hi Todd W. -

The authors of the Mayo study admit that their study design fails to account for duration or intensity of symptoms, which, if you know any parent of a child with autism and gastro problems, is where the action is.

For example, if one of my children had constipation once and reported it to my pediatrician, it counts the same as my other child being constipated for a year straight. These should not be comparable situations if our goal is to gain insight towards systemic problems in one population.

This is how the rather alarmling looking total values, 72% of all children having gastro issues can be made to make more sense. Any time a child had any report of any gastro intestinal problems over an eighteen year period counted.

- pD

Case-control studies that rely on records could be biased too. For example, it wouldn't be surprising that parents of autistic children would tend to report GI complaints more often, because the internet says autistic children should have more GI complaints.

Blinded medical tests would be more accurate; probably not invasive ones. There are other ways no doubt.

Pablo wrote;

"I suspect it has to do with the fact that, in order to actually study something like this, you have to create objective standards for what you mean by "picky eating." I'm sure every parent can provide stories about how their kid wouldn't eat this or wouldn't eat that, but most of the times such things don't rise to the level of "picky.""

Very true. Most of the time parents do not see the "picky" eating habits as noteworthy. My wife in special education often has to point out the fact that a diet of baloney sandwiches everyday does not constitute an acceptable diet. Which of course brings up the issue of gastrointestinal issues potentially created by a monotonous diet of white bread (gee maybe some constipation there?)and processes meats.
So "Picky" as a reportable issue it becomes opinion.

It isn't a coincidence that so many parents of children with autism report that their childrens behavior, and in some instances, cognition, improves on restriction diets.

Are you sure? Autistic children do sometimes improve on their own, as every placebo-controlled trial of autism medication has shown. It is not uncommon in such studies to see 30% or more "responding" to placebo. And a lot of people are giving their autistic kids restriction diets. So it is certain that many children will indeed improve on such diets just by coincidence. Are there any controlled trials showing that such diets work better than placebo?

Hi Trrl -

Are you sure? Autistic children do sometimes improve on their own, as every placebo-controlled trial of autism medication has shown. It is not uncommon in such studies to see 30% or more "responding" to placebo. And a lot of people are giving their autistic kids restriction diets. So it is certain that many children will indeed improve on such diets just by coincidence. Are there any controlled trials showing that such diets work better than placebo?

How about, pretty sure?

There is a 'high quality' trial, Elder, that showed 'no group differences', but did note that some children did show improvement and there were unsolicited comments from therapists / teachers for a few children regarding rather sudden improvements. This was a small trial (13 children with a crossover period), wherein 'some' children were found to have been sneaking food. There are several unblinded studies on the diet that have findings more in line with the annectodal. Supposedly there has been a year long study completed a while ago involving thrity children, but the results haven't been published. (?)

What is driving it home for me are the immunological findings that I linked to; unless all of those studies are wrong in the exact same way, children with autism are reacting differently to the proteins in wheat and dairy. These are findings that aren't subject to the perils of placebo. Do you have any ideas why we might want to think that the clinical observations I listed are incorrect?

The chance exists that it could be a coincidence that the immune response relationship was detected, and so many parents report changes in their children on restriction diets, but in general, I hate believing in coincidences without any good reason.

Also, I've seen it happen with my own son again and again. Give him a trial of pizza, and watch him bounce off the walls until 2:00 am. For the next few days there are rather difficult to misinterpret changes in terms of eczema on his arms, and indeed, in his bowel movements. You'd be surprized how few trials you need to undertake to become convinced that it isn't your imagination.

- pD

How about, pretty sure?

Pretty sure that there was an effect, based upon a study that found none?

There is a 'high quality' trial, Elder, that showed 'no group differences', but did note that some children did show improvement and there were unsolicited comments from therapists / teachers for a few children regarding rather sudden improvements. This was a small trial (13 children with a crossover period), wherein 'some' children were found to have been sneaking food. There are several unblinded studies on the diet that have findings more in line with the anecdotal.

Yes, this is pretty much what one always sees with ineffective treatments for autism. The secretin story was much the same. Effects, sometimes large, are seen in unblinded studies, but not in properly controlled studies, because autistic children do occasionally show "rather sudden improvements" no matter what the treatment might be, even placebo--and whatever treatment they happen to be getting at the time gets the credit. Of course, it's a small study, but the crossover design is quite powerful--so if there was a strong effect, it should have shown up. It could still turn out that the benefit from such a diet is very small, or else that only a small percentage of autistic children respond to such a diet. Probably worth doing a larger study, but I'm not optimistic. The bit about "sneaking food" is the usual straw-clutching you hear from researchers disappointed that the results didn't fit their hypothesis. Especially in a crossover design, it should be possible to see the benefit even if a few kids managed to sneak an illicit snack here and there. So again, we're talking about an effect that is either small or rare...or nonexistent.

You'd be surprized how few trials you need to undertake to become convinced that it isn't your imagination.

And you'd be surprised at how dramatically expectation can influence one's perceptions. Many parents are absolutely convinced, for example, that sugar makes their kids hyperactive, and will tell the same kind of tales you do of kids "bouncing off the walls," yet multiple placebo-controlled studies have shown that it is not true--but if parents are told that their kid received a sugary meal, they will perceive him as hyperactive. Not coincidence, just power of suggestion and selective perception.

What is driving it home for me are the immunological findings that I linked to; unless all of those studies are wrong in the exact same way, children with autism are reacting differently to the proteins in wheat and dairy. These are findings that aren't subject to the perils of placebo.

Actually, researchers can fall prey to placebo effects as well. One thing science teaches us is that we are all vulnerable to expectation bias. It is all to easy to come up with rationalizations to discard data that don't fit with expectations. And even if there is some sort of genuine biochemical difference, it does not follow that the difference has any clinical significance, except to the extent that hearing about such studies influences parental expectations.

trrll states:

Many parents are absolutely convinced, for example, that sugar makes their kids hyperactive, and will tell the same kind of tales you do of kids "bouncing off the walls," yet multiple placebo-controlled studies have shown that it is not true--but if parents are told that their kid received a sugary meal, they will perceive him as hyperactive. Not coincidence, just power of suggestion and selective perception.

My favorite study of this phenomenon is Hoover and Milich, "Effects of sugar ingestion expectancies on mother-child interactions." [J Abnorm Child Psychol. 1994 Aug;22(4):501-15.]. In this study, the researchers told the parents (mothers, in this case) that the child had received a sugar-containing drink when they hadn't and then asked them to rate their children's behavior. The researchers observed the parent-child interaction, with emphasis on the parents' behavior.

Not surprisingly, the parents who had previously stated that sugar made their child "hyper" found that they were "hyper" after receiving an sugar-free drink. To quote the study:

"Mothers in the sugar expectancy condition rated their children as significantly more hyperactive. Behavioral observations revealed these mothers exercised more control by maintaining physical closeness, as well as showing trends to criticize, look at, and talk to their sons more than did control mothers."

We not only tend to see what we expect, sometimes we cause it. Interesting, especially in light of the supposed connection between autism and GI problems and "picky" eating.

Prometheus

Hoover and Milich is one of my favorite studies to discuss when talking about pediatric feeding problems, autism, and the perceived effects of diets. The study showed that not only was there a false positive but also a "false" negative (regarding the hypothesis that sugar = hyperactivity) in that when given a sugared drink and told they had a sugar-free drink, there was no indication of hyperactivity in parental report.

As an aside, I've likely placed more children on gluten-free diets for a good reason than most have for bad reasons. Food allergies require removal of the allergen from the diet but that is not going to "cure" autism. A child with an allergy usually has overt signs of the allergy and does feel and act much better when the allergen is removed from their diet. Maybe they are better prepared to benefit from instruction but if they have an ASD, the ASD is still there. Gluten allergies also are often outgrown by the age of 8 or so. Rechallenging the allergen at that age can reveal that the allergy is no longer present (n=26 of 29 in my experience, granted a small sample).

Orac,
I find your posting abrasive and arrogant. Why do you feel the need to attack a group of people who are trying to help their children. I wonder how this meeting even affects you directly. My son has autism which I do not blame on vaccines. However, he does have high levels of mercury and chelation has helped him. Changing his diet has also significantly reduced his symptoms. Your post would explains this away as a placebo syndrome because we are seeing what we want to see which sounds like something a moron would say. You know who who noticed his improvement besides us - his pediatrician. Do you have a child with autism? Do you no how hard it is for a parent of an autistic child? If you did, you probably would try "quackery" as long as it was safe and offered the possibility of improvement to a child`s life.

Do you have a child with autism? Do you no how hard it is for a parent of an autistic child? If you did, you probably would try "quackery" as long as it was safe and offered the possibility of improvement to a child`s life.

@Norquist: Plenty of parents of autistic children (like me) don't use quackery, not just because it's woo with unlikely and unproven benefit, but because we don't think it's a good idea to do medical experimentation with our children.

Additionally, I don't appreciate your appeal to pity.

Why do you feel the need to attack a group of people who are trying to help their children.

Because these people are not helping children, they are fattening their wallets at the expense of the children and their parents.

Also, these people are taking resources away from more viable ways of helping our children.

My son has autism which I do not blame on vaccines. However, he does have high levels of mercury and chelation has helped him. Changing his diet has also significantly reduced his symptoms. Your post would explains this away as a placebo syndrome because we are seeing what we want to see which sounds like something a moron would say.

One doesn't have to be a "moron" to be deceived by expectation bias, or to mistake correlation for causation. There is a certain natural human arrogance--we all like to imagine that we are special, that because of our intelligence, or experience, or our special connection with our children, that we are somehow immune to those universal errors of thought that afflict other mere mortals. One thing that doing science teaches us is humility; in the words of the great physicist Richard Feinman, "The first principle is that you must not fool yourself - and you are the easiest person to fool."

So I'm sure that you sincerely believe that you don't need all that placebo stuff to tell if a treatment has helped your child. And yet study after study has shown that parents are just like everybody else in being extremely susceptible to expectation bias and to inferring causality where none exists.

It is worth noting that unless you are living in a toxic waste dump, the chance that your child actually has abnormally high levels of mercury is essentially zero. No study has ever confirmed the presence of elevated mercury in autistic children. There are a few labs that cater to quacks, and use invalid tests, such as "provoked" mercury testing to convince parents of autistic children to invest in costly and potentially dangerous chelation therapy. And parents who fall prey to this sort of fraud are highly prone to perceive some "improvement" (which may be real; as placebo trials show, perhaps 30% of autistic children will show improvement over a study period of a few weeks even with placebo treatment) and will credit chelation. The fact that you misinterpret genuine outrage over parents being defrauded, and concern for autistic children being subjected to dangerous and ineffective treatments, as "attacks" upon parents of autistic children is an indication of the extent to which your emotional investment is impairing your judgement.

Went to her website. Yes, she has done the required 3 days of research on the "INTERNETS". Playboy Bunnies and now Pagent Queens. Why do we need MD's and PHD's anymore?

Wow Guys- for trying to BASH SOMEONE you sure did promote her (lol) that us exactly what she wants,

lets start with the fact that she got the video cam out aftre her "precious child " was nearly gone ... as far as the whole mrs michiagn PLEASE............ she was year a ago... remember that her heart is in the right place and again her goal is to promote herslef and declare herself as a national spokespaerson.. HOW DARE YOU COMPAre her to jenny........ even thought you do not like her (as we all know) that is what she would like you to promote... dont you get it??? she is and told a friend of mine that if she could only get a national spokeperson position she couls tour.... with 3 kids and a magician as a dad one of the kids autistic , why would you ... YOU WOULD HAVE TO KNOW HEIDI HA HA

SHE LOVES ANY PUBLICITY AND IS A SELF PROCLAIMED WHATEVER SHE WANTS.. SATY HOME WITH YOUR KIDS AND HELP GANNON

YOU KNOW SHE IS A SELF PROCLAIMED ANT'L WHATEVER, SHE TOLD A FRIEND OF MINE ALL SHE NEEDS IS TO HOOK UP WITH A NA'TL CO AND TOUR.... HELLO 3 KIDS AND ONE IS AI/////////

Wow! I can't believe the reaction from so many people up there in my home state. The truth is vaccines can cause a number of problems for some. A dear friend of mine did have a child who was injured by a vaccine the same day the shot was given and the child's life, as well as the family's life have been changed forever. I'm not sure of this woman's intentions, but I would assume mostof these mothers are acting from a place of desperation, instead of publicity. Don't kid yourself into thinking that vaccine injury is not possible. That is why the vaccine compensation fund has been established. Take a look at the VAERS website and you can read about some of the injuries that have happened to individuals.

Regarding the VAERS database:

http://scienceblogs.com/insolence/2008/01/how_vaccine_litigation_distor…
http://scienceblogs.com/insolence/2008/08/woo_and_antivaccinationism_in…
http://scienceblogs.com/insolence/2008/08/why_medscape_why.php
http://scienceblogs.com/insolence/2009/10/now_theres_a_cage_match_id_li…

Bottom line: The VAERS database is not a reliable estimate for the frequency of adverse reactions to vaccines.

Second bottom line: The road to hell is paved with good intentions.

@Beth

Just to add on to Orac's comment, VAERS shows adverse reactions purported to have occurred. None of the claims in there can be taken at face value. FDA spends a fair bit of resources following up on VAERS reports to determine if the event reported a) actually happened and b) bears any real relationship to the vaccine or is due to some other medical condition (or something else entirely).

You are correct in the fact that VAERS is not reliable. As a matter of fact, it is believed that only 10 % of all vaccine injuries are actually reported to VAERS.

@Orac

After reading the links you posted, I can see we only agree on this- vaccines are not 100% effective and not 100% safe (as with most medicine) and what parents have to do is decide if the benefit of vaccination outweighs the risk. To me, there are some vaccines that just don't fall under those guidelines, i.e. the varicella vaccine, the Guardisil vaccine and the flu vaccines.

Really? Please explain how you determine if the benefits outweigh the risks (which they clearly do for the flu vaccines, both seasonal and H1N1, the varicella, and the Gardasil vaccine by the way).

Please be specific and show your reasoning, with statistics for the risk versus the benefit.

Have you heard of Dr. Andrew Moulden? If you get a chance, please read the below article and let me know your thoughts.

www.kickthemallout.com/article.php/Story_Dr_Moulden_On_Vaccines

I think there are those who benefit from receiving vaccines, such as those who may already have compromised immune systems, but doesn't the very vaccines they are given put them at risk for developing what they are being vaccinated against? How do you explain the increase in autoimmune disease today? Don't you think there is a correlation between the amount of vaccines that are given and the increase in such diseases? When I think back to when I was growing up, we all had the chicken pox and no one I knew of ever had a problem with them (although I am aware, again, that it is dangerous for those with a compromised immune system). Now, by vaccinating all these kids with a vaccine that is believed to only be effective for 10 years, we have put these kids at risk for getting chicken pox into their adult years, which of coarse, is more dangerous.

Please let me know your thoughts.

Beth, Andrew Moulden is either a con man or mentally ill or possibly both. He is head of a whackaloon Canadian political party that caters to conspiracy theorists etc. He claims he can diagnose people from a short video. He is a credible a source for medical information as David Irving is for history or Orly Taitz is for legal advice.

@Beth

but doesn't the very vaccines they are given put them at risk for developing what they are being vaccinated against?

For nearly every vaccine, no, they cannot develop the disease being vaccinated against from the vaccine. Vaccines use part of the virus/bacteria (not able to cause infection), "killed" virus/bacteria (not able to cause infection) or live, weakened virus/bacteria (not able to cause infection), depending on the disease being targeted.

As for chicken pox, natural infection makes a person immune to further chicken pox infections, depending on the severity of the initial bout. Some people may get it multiple times if they do not have a sufficient immune response. And even with a robust response, there is still the potential for infection later in life.

Further, natural infection puts the individual at risk for shingles later in life, which can cause debilitating pain and potentially blindness, neuropathy and a host of other bad things. The vaccine does not do this. What's more, vaccines give immunity without the adverse effects of the disease. Any serious adverse response to the vaccine is far less likely than serious complications from the disease itself. Take a look at the following link for some comparisons: http://www.cdc.gov/VACCINES/vac-gen/6mishome.htm#risk

@Todd W.

You are incorrect with what you are saying about the varicella vaccine. You can develop shingles from the vaccine, as my friend's daughter did. My friend's daughter had 4 strokes hours after receiving the varicella vaccine (which stroke is a side effect of natural chicken pox, as well). Obviously, a serious complication from the vaccine. Are you familiar with Dr. deVeber from Toronto? She has done a lot of studies with children who suffer strokes from the varicella vaccine. Even on the CDC's website, it states sever brain reactions are a rare, but severe side effect of the vaccine.

@Beth

In the case of your friend's daughter, was a diagnosis of shingles made (as opposed to a diagnosis of chicken pox or a diagnosis of vaccine adverse reaction)? If so, based on what? Was a causal link to the vaccine found? If so, how? Was the lot the vaccine came from investigated to determine if it was contaminated in some fashion?

Vaccines do carry a very remote risk of adverse reactions. While your friend's daughter may have been one of these rare cases, I remain skeptical that the vaccine caused infection. Even more, I am skeptical that it caused shingles, as opposed to chicken pox. I may be wrong. Present adequate data, and I'll change my mind.

@Todd W.
A diagnosis of shingles was made w/in 5 months of receiving the vaccine by neurologists at the U of Michigan hospital, where she was treated after strokes. The lot number, I believe, was looked into, but I'm not sure of the findings. I do believe she was one of the rare cases of the vaccine causing significant injury. The problem is the virus still lies dormant in our system, as in the case of naturally acquiring the disease, and we (the kids) are still all susceptible to shingles. The other problem is parents are not told of the serious side effects and do not have the knowledge to make an informed decision.

@Beth

I'm curious, had the daughter contracted or been exposed to chicken pox at all before? Because, as far as I know, the only way to get shingles is to have been exposed to and contracted the live varicella virus previously. I took a look to see what form of antigen the vaccine uses and found that, at least in the U.S., it uses a live, attenuated virus. It is a very rare possibility that the vaccine version of the virus can mutate to become a virulent strain again, but that is exceedingly rare. At any rate, it would be interesting to know what was found when the vaccine lot was examined.

I also found the following on the CDC site, regarding length of protection, emphasis mine (http://www.cdc.gov/VACCINES/vpd-vac/varicella/vac-faqs-gen.htm):

The length of protection/immunity from any new vaccine is never known when it is first introduced. However, available information collected from persons vaccinated in Japan in the United States show that protection has lasted for as long as the vaccinated persons have been followed (25 years in Japan and more than 10 years in the U.S.). Follow-up studies are ongoing to determine how long protection will last and to evaluate the need and timing for booster vaccination. If it is determined in the future that a booster dose is necessary, your health-care provider will inform you. Currently, no booster dose is recommended beyond the recently recommended two-dose vaccination series.

A quick note on being informed. You said:

The other problem is parents are not told of the serious side effects and do not have the knowledge to make an informed decision.

Not the fault of the vaccine, there, but the physician should be telling the parents/patients about the risks of any and all treatments received, as well as a copy of the labeling, which lists the possible side effects. I'm not sure how well doctors as a whole do this.

Even with that information, however, people are really bad with calculating risk, and tend to go with what is perceived to be the less risk in the short-term, as well as which option is less likely to result in feelings of guilt. When it comes to vaccines, it is generally a "if I go ahead with the vaccine, and something bad happens, then I'm responsible, but if I don't go ahead with the vaccine, and something happens, that's just bad luck". Short term, known, but highly unlikely risks tend to outweigh long-term/far-off, unknown, more likely risks.

Beth:

Have you heard of Dr. Andrew Moulden? If you get a chance, please read the below article and let me know your thoughts.

That does not answer Orac's question.

You might want to try using the search box on the left hand side of this page. Moulden is mentioned a few times on this blog.

And a reminder, the plural of anecdote is not data.

Beth, if you have any doubts that Moulden is either a whackaloon or a con man exploiting whackaloons, Check out the Canadian Action Party http://www.canadianactionparty.ca
that Moulden led until recently. Apparently Moulden has now gone over to the Christian Heritage Party (right wing whackaloons as opposed to left wing whackaloons). The CAP was founded by a former defense minister after he had deteriorated from eccentric to barking mad.

@ Todd W.
No, my friend's daughter was not exposed to chicken pox previously. You are correct with the fact that the U.S. uses the live, attenuated virus and yes, the virus has been shown to be active for approximately 4 years. In my friend's case, the daughter had a fifth stoke 4 months after the initial four.

As far as the longevity of the vaccine, does it really matter if the vaccine lasts 10 or 25 years? We've still put all these kids at risk of getting the chicken pox as adults either naturally or from others receiving the vaccine.

While I do believe the responsibility of vaccine injection for children lies with the parents, I, also, think the information needs to be given from the doctors and from the CDC in a language that non-medical people can understand. "Severe brain reaction" does not mean stroke to someone not familiar with the terminology.

@ Chris

As far as the varicella vaccine goes, the majority of kids who develop chicken pox naturally are between 5-9 yrs. old and most recover completely and have a lifetime immunity to the disease. Per VAERS, as of 2000, approximately 4% of reactions from the vaccine were serious and included seizures, shock, encephalitis and 14 deaths. The numbers today of all reported adverse reactions are about 7 times higher than they were in 2000. You do the math.

@ militant agnostic

I have read more on Moulden and his position. I would hate to think that he is taking advantage of those who are so desperate to find an answer to what has happened to their children. Shame on him, if that is what he is doing. Time will tell. I will repost if I find out later he is bogus.

You have still not answered Orac's question with real data.

VAERS is a self selected survey and cannot be used as evidence. Children who get chicken pox are also eligible for shingles later, because the virus does not go away.

Did you read the link I provided of Orac's Moulden article? Why would you think he can diagnose anything from a video?

@Chris

Here's a link to a study that Gabrielle de Veber was a part of. She does a lot of research in this area.

http://stroke.ahajournals.org/cgi/content/abstract/32/6/1257

and another link-
http://www.jpeds.com/article/S0022-3476(04)00718-8/abstract

Moulden is a quack, pure and simple, in my not-so-humble estimation. The link provided by Chris says all I need to say about him.

The first was a study of the disease, and the second was a pair of case studies (which are really well documented anecdotes). The latter is probably what prompted this paper: Varicella vaccination and ischemic stroke in children: is there an association?

CONCLUSION: Our retrospective cohort study of >3 million children found no association between varicella vaccine and ischemic stroke.

You have still not answered Orac's question. Here it is again in case you forgot:

Please explain how you determine if the benefits outweigh the risks (which they clearly do for the flu vaccines, both seasonal and H1N1, the varicella, and the Gardasil vaccine by the way)... Please be specific and show your reasoning, with statistics for the risk versus the benefit.

@Beth

As far as the longevity of the vaccine, does it really matter if the vaccine lasts 10 or 25 years? We've still put all these kids at risk of getting the chicken pox as adults either naturally or from others receiving the vaccine.

You appear to have misread what I posted. It does not say that protection only lasts 10 years or 25 years. It says that for as long as people have been followed after vaccination, protection has lasted. In other words, so far the data conclusively show that it lasts at least 10 or 25 years, but probably lasts longer. No study has looked beyond 10 years in the U.S. and 25 years in Japan, so we cannot conclusively say that immunity lasts past that time.

As to doctors explaining things to parents, yes, I agree. Parents should be taking responsibility to read the labeling and asking questions about anything they are unclear on. They should also be informed of the risks of not vaccinating and how that compares to the vaccine. E.g., a 1 in 1,000,000 chance of X from the vaccine vs. 1 in 10,000 chance of the same thing from the disease.

And just to clarify with your friend's daughter, was it stroke or seizure? Stroke would, I think, indicate some other underlying condition not related to the vaccine, to have happened 4 times in 4 months. But then, I'm not a neurologist, nor do I know the full details of the case.

@ Todd W.

My friend's daughter had 4 ischemic strokes the same evening after her vaccination. She went on to have a fifth stroke about 4 months later. The doctors (neurologists from the U of M) are stating that the stroke was caused from the vaccine. The child, also, has vasculitis now, as a result. Testing was done, as well as genetic testing and the conclusion from the medical establishement was that the child was injured due to the chicken pox vaccine. Obviously, I am not a medical expert, but I hope I was able to convey the situation to you. I appreciate your information and frankly, your willingness to have a discussion regarding vaccines, this one in particular, without dismissing the possibility that these things do happen. I wish you all the best and thank you.

Beth:

Obviously, I am not a medical expert, but I hope I was able to convey the situation to you.

Still, what you are saying is hearsay, basically you heard from the parent and are not reading the medical reports. Many of these remarkable cases get published as case reports (like the second paper you linked to), but they are still anecdotes.

There were enough anecdotes that there was a large scale study, which showed that the number of strokes was about the same that could happen without the vaccine. Unfortunately things like this happen. In two of Dr. Paul Offit's books he recounts a story of a child who had a seizure just moments prior to getting a vaccine (which was not given). If the seizure had happened a few minutes later, what do you think would be pointed to the cause of the seizure? He also tells the same story in this Books and Ideas podcast (the podcaster is an emergency room doctor with an interest in books, neuroscience and Buffy the Vampire Slayer).

Note, there are risks to vaccines, just like any other medical procedure. But you have to compare the risks from the vaccine to that of getting the disease, which is why Orac asked you for that information. You did mention that strokes do happen with the disease of chicken pox, but how many actually occur due to the vaccine? The data show that the vaccine is much safer than the disease.

Orac, you have my deepest sympathies. Seeing as Wakefield is about to keynote a convention within walking distance of my house, I understand all too well.