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Bernadine Healy gets it wrong

17 Apr

Following Bernadine Healy’s April 14th post in USNews, Orac dealt her a dollop of respectful insolence which is a very good read, as are the comments.

However, I wanted to do a kind of accounting on Healy’s post, to see just how firm a grasp on the whole situation she has. So, lets start.

McCarthy and Carrey and two colleagues from the autism advocacy group she founded, Generation Rescue…

Oops. Sentence two, first error. McCarthy did not found Generation Rescue, JB and Lisa Handley did.

…and parents are raising legitimate concerns, yet unanswered…

I have been on the front line of this debate for the last six years. Once upon a time the question ‘do vaccines cause autism’ _was_ a legitimate one to ask. But that question has been asked and answered. Since about 2003/4 there have been _no_ legitimate concerns raised by parents or anyone else. The MMR question has turned out to be both a con and the result of bad science. The thiomersal question is just a defunct hypothesis, given that thiomersal was largely removed from vaccines by 2002 and yet autism rates continue to climb. Despite desperate attempts to rebrand the autism/vaccine question (aka when you know you’re right and yet turn out to be wrong, know you’re right with something else) into questions about greening vaccines when simple searching reveals that newborns contain most vaccine ingredients either naturally or via breast feeding. Or the hellacious vaccine schedule despite the fact that the UK for example has a higher rate of autism (1 in 100 vs 1 in 150) but a lower amount of vaccinations.

This controversy might be resolved if we can focus on a few big questions, with an open mind…

Mistake number three. There is no controversy. In the field of _science_ asking the _scientific question_ ‘do vaccines cause autism’, there is no controversy at all. What there is is a very good and well executed media campaign to manufacture one. However, the facts remain the facts – no vaccine, no vaccine ingredient and no vaccine schedule either solely or together cause autism. There is simply no sound science to support that set of ideas. If there is a controversy it is how the media continue to let people stoke the fire of this idea.

Influenza vaccine, mandated here starting at age 6 months…

Mistake number four. As far as I can tell, the flu vaccine is not mandatory in the US. Certainly this article covering the 2008/09 flu season states:

It will not be mandatory for every child to have the flu shot…

Onward.

…a study from Canada last year found that delaying the diphtheria, tetanus, and pertussis vaccination just a few months decreased by 50 percent the risk that a child develops asthma…

Mistake number five. This has absolutely no bearing an autism. The article is entitled ‘The Vaccines-Autism War: Détente Needed’. Not ‘vaccines, asthma, maybe other stuff as and when I think of it-autism war’. As such this strawman argument has nothing to do with autism.

(Side note: Healy says we should read two doctors thoughts on the pros and cons of a flexible vaccine schedule. It maybe will come as no surprise that the doctor who thinks the US needs a flexible vaccine schedule is ‘Vice chair, Section on Complementary and Integrative Medicine’ of the AAP).

The goal is to get all kids appropriately vaccinated…

Mistake number six. The organisation Healy references at least twice, Generation Rescue, have this on the front page of their Facebook Group

“I found that the whole vaccine business was indeed a gigantic hoax…” –Dr Kalokerinos MD June 1995

“There are significant risks associated with every immunization and numerous contraindications that may make it dangerous for the shots to be given to your child…” — –Dr. Robert Mendelsohn MD, pediatrician

Onward again.

…Hannah Poling, for example, who has an underlying mitochondrial disorder and developed a sudden and dramatic case of regressive autism after receiving nine immunizations, later determined to be the precipitating factor…

Mistake number seven. Nowhere, repeat, nowhere has it been published that Hannah Poling’s vaccines were the ‘precipitating factor’ in her autism. If anyone thinks that it has been published I would like a link to that document. I’ve been asking for this for over a year now and no one has ever managed to show me where this is stated.

What _has_ been said is that following her vaccines hannah showed ‘features of autism’. As I have said numerous times, ‘features’ of autism is not interchangeable with autism. If it was, then the medical report co written by four doctors including Hannah Polings father Jon Poling would have simply said ‘autism’. In fact, this medical case study listed a number of symptoms (over 20) of which only three were found on the DSM (IV) (the official diagnosis for autism). She may well have been autistic and she was determined to have been vaccine damaged but that does not automatically mean one caused the other and in fact by the lack of any of the many other symptoms needed to reach a diagnosis of autism, we can see that they were not.

Amd again, onward:

Other children may have a genetic predisposition to autism, a pre-existing neurological condition worsened by vaccines, or an immune system that is sent into overdrive by too many vaccines, and thus they might deserve special care. This approach challenges the notion that every child must be vaccinated for every pathogen on the government’s schedule with almost no exception…

Not exactly any mistake here but this is very misleading. Its well know _already_ that some kids _do_ have conditions that are not amenable to vaccines. Less than 30 seconds of searching the CDC website led me to the appropriate information. I think it is incredibly disingenuous and very ignorant of Healy to comment in the manner she has.

Onward we trudge through the morass.

Paul Offit, an infectious-disease expert from the University of Pennsylvania who has been a frequent spokesman and adviser on vaccine policy (and by his admission has become wealthy by developing the now mandated rotavirus vaccine)

Mistake number eight. The Rotavirus vaccine has never been mandated anywhere that I can see.

So this is Dr Bernadine Healy, a scientist with 125 records in PubMed. Impressive until you realise that, just like this, they are 125 blog entries from US News. That means we can say that on average Healy has got 1,000 mistakes into PubMed.

Good going Bernadine.

Features of autism

29 Mar

I was planning on writing something about this for the 1 year anniversary of when the Department of Justice concession to Hannah Poling was leaked.

Why wait until now? Because it was basically impossible to discuss this last year. Immediately after the leak, the phrase “features of autism” was made into a running joke. The vaccines-cause-autism people all made great fun of how the government coined the phrase, presumably to avoid using the simple word, autism.

Anyone want to go back and look at the document now? Search for the word “features”.

First hit:

Dr. Zimmerman observed that [Hannah Poling] watched the fluorescent lights repeatedly during the examination and would not make eye contact. Id. He diagnosed [Hannah Poling] with “regressive encephalopathy with features consistent with an autistic spectrum disorder, following normal development.”

Note that that’s in quotes: “features consistent with an autistic spectrum disorder”. That’s right, Andrew Zimmerman, Hannah Poling’s own neurologist used the phrase “features of autism” about her, long before the Department of Justice ever did.

This is the same Andrew Zimmerman who submitted an expert report on Hannah Poling. This is the same Andrew Zimmerman who wrote an expert report, for the government side, in the Autism Omnibus Proceeding.

Not the only place “features” is mentioned in the Rule 4(c) report, either:

Second Hit:

[Hannah Poling] was evaluated by Alice Kau and Kelley Duff, on May 16, 2001, at CARDS. Pet. Ex. 25 at 17. The clinicians concluded that [Hannah Poling] was developmentally delayed and demonstrated features of autistic disorder.

So, why is it surprising that the Department of Justice would write:

In sum, DVIC has concluded that the facts of this case meet the statutory criteria for demonstrating that the vaccinations [Hannah Poling] received on July 19, 2000, significantly aggravated an underlying mitochondrial disorder, which predisposed her to deficits in cellular energy metabolism, and manifested as a regressive encephalopathy with features of autism spectrum disorder.

That’s the third place that “features” is used in the concession document. But, hey, it isn’t funny to talk about Hannah Poling’s own specialists describing her as having “features” of an autistic spectrum disorder.

It is very easy to make more out of this than is warranted by the scant information we have available. We don’t know what is in the rest of the documents that were provided as part of the case. What we do know is that the U.S. government did not create the phrase “features of autism” to describe Hannah Poling.

Poling turns his back on genetics

13 Mar

It’s been a year since the concession in the Hannah Poling case was made public. I’ve been thinking that we would likely see some discussion on it again–especially since the Bailey Banks case didn’t turn into the media event that the autism-is-caused-by-vaccines groups would have liked.

OK, I’m not that good at predicting events, but I was thinking after a year it is time to write a couple of posts about some issues from the Hannah Poling case for a couple of weeks. So, I wasn’t totally surprised when Dr. Jon Poling came out with an op-ed piece in the Atlanta Journal Constitution, “Blinders won’t reduce autism”.

When I read this last night, I thought “why blog this?” But, one line in there bugged me–it’s a common misconception but one that a doctor, heck a neurologist, should never make: the idea that genetic conditions aren’t treatable.

Here’s the quote:

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention

Wow. I guess we should tell Dr. Randi Hagerman at the UC Davis MIND Institute and everyone else working on fragile-X (a genetic condition that is on the verge of demonstrating valuable interventions) to stop their work?

And, why is it that people who claim to support “gene-environment” interactions seem to have disdain for the “gene” part? How are we supposed to separate the various autism subgroups without identifying the genes? And, if we identify genes, won’t their function give us some idea of what environmental causes might be worth studying?

OK… I’ve got that out of my system….

As long as we are here, we might as well look at some other fallacies. A good place to start is the Autism Street blog, who covered the poling op-ed. It’s well worth the read, as he covers some things I won’t.

One thing we do both cover–this statement by Dr. Poling:

Public school systems are drowning in the red ink of educating increasing numbers of special-needs students.

Autism Street has a nice graph (again, I encourage you to take a look), but here I’ll just point out that this assertion by Dr. Poling about the increasing numbers of special education students is just plain false. The percentage of the student population in Special Education has remained remarkably constant over the past 10 years or so. The cost of some of the autism therapies (ABA in particular) has likely driven costs up, but that isn’t what Dr. Poling said.

The main reason I was going to avoid discussing Dr. Poling’s Op-Ed is the fact that is is rather poorly disguised attempt to air his ongoing battle with Dr. Paul Offit.

Dr. Poling writes discusses how Dr. Andrew Zimmerman is a hero to the cause because of a recent book he edited. He then makes Dr. Offit the villain for Autism’s False Prophets:

On the other hand, Dr. Paul Offit, the vaccine inventor whose Rotateq royalty interests recently sold for a reported $182 million, has written a novel of perceived good and evil called “Autism’s False Prophets.”

Frankly, I think Dr. Poling should have listened to that little voice in his head (which I hope was there) saying, “Don’t take the cheap shots”. By which, I think that describing Dr. Offit’s book as a novel was rather silly and just points out that this is a personal attack by Dr. Poling. It doesn’t add, it just detracts.

If you think calling that a personal attack is a stretch, here’s a bit of telling imagery:

In the story, Offit takes no prisoners, smearing characters in the vaccine-autism controversy as effortlessly as a rich cream cheese.

Actually, I thought that Dr. Offit gave people like Andrew Wakefield a lot of respect, considering the low quality of their research and their public actions.

I was struck by the “cream cheese” allusion. Anyone recall this?

Paul Offit is the Philadelphia cream cheese of the autism debate — he smears so effortlessly

–Dan Olmsted, September 13, 2008

It stuck in my mind because it was so bad. Seriously, I had some people outside of the autism world read that bit by Dan Olmsted and asked them what they thought Dan Olmsted was trying to say. The readers didn’t come away with Mr. Olmsted’s message (that Dr. Offit smears others easily). Instead, they came away thinking Dan Olmsted was saying that it was easy to smear Paul Offit! S

My guess is that Mr. Olmsted wasn’t writing for anyone other than the Age of Autism regulars who would overlook his clumsy writing for a chance to poke fun at Dr. Offit, so he probably isn’t bothered.

I guess Dr. Poling thought it was a good analogy.

But, back to my own clumsy writing. Dr, Poling makes this statement:

As both parent and doctor, I cannot fathom turning my back on a child nor science, in order to avoid inconvenient questions about vaccine safety or any other reasonable environmental factor.

For my part, I wonder how a neurologist can turn his back on considering genetic conditions worthy of intervention. I wonder how a scientist who supports the idea of gene-environment interactions can turn his back on genetics.

Dr. Poling closes with this statement:

In the end, logic and reason will prevail over politics and profits.

God, I hope so. Unfortunately, Dr. Poling seems to have allied himself with groups who have abandoned logic. Generation Rescue and David Kirby come readily to mind.

Did you think that was it? More MMR bull arrives

25 Feb

The recent decision by the Special Masters in the Autism Omnibus case that MMR/thiomersal can’t cause autism according to evidence presented by HHS and lack of evidence presented by Master et al hit the mercury militia hard. They genuinely thought they were going to win.

But, of course, there was a ‘Plan B’ ready just in case. Today we see its co-ordinated unveiling. In part one, that scientific heavyweight Jenny McCarthy, together with her partner Jim Carrey released a press release:

Jenny McCarthy and Jim Carrey’s Los Angeles-based non-profit autism organization, today announced that the United States Government has once again conceded that vaccines cause autism…

Both the inference and the statement of fact are in error here. The United States Government has _never_ conceded that vaccines cause autism. I challenge McCarthy and Carrey to show the statement that contradicts me. Team McCarrey’s announcement today also fails to establish that the US government have conceded vaccines cause autism.

Of course, the historical reference is to Hannah Poling. As has been discussed numerous times, Hannah Poling’s autism has not been shown to have been caused by vaccines. I have asked various people, including David Kirby numerous times to provide back up to their belief the government have said vaccines caused ehr autism. They cannot. They have not. In point of fact, only three of Hannah Poling’s symptoms that were described by both HHS and a scientific case study co-authored by her father as those being caused by vaccines, tally with the DSM (IV) criteria for ASD.

The case of Hannah Poling is a red herring.

As we shall see, so is this ‘new’ case.

Team McCarrey go on:

The announcement comes on the heels of the *recently unsealed* court case of Bailey Banks vs. HHS

If by ‘recent’ one means July 2007 then they may have a point. But I don’t think ‘recent’ can really apply to a case which has had open access to it (Kathleen blogged about it in May 2008) for about a year and a half. So why lie? To add to the drama, whip up mystery and confusion of course.

But now we get to the meat of it – the actual ruling. In Part II of today’s coordinated attack, RFK Jr and David Kirby blogged about this case.

Kennedy jumps straight in:

…last week, the parents of yet another child with autism spectrum disorder (ASD) were awarded a lump sum of more than $810,000 (plus an estimated $30-40,000 per year for autism services and care) in compensation by the Court, which ruled that the measels-mumps-rubella (MMR) vaccine had caused acute brain damage that led to his autism spectrum disorder.

Whereas David is a tad more circumspect:

Is vaccine-induced ADEM (and similar disorders) a neurological gateway for a subset of children to go on and develop an ASD? That question will now become subject to debate…Special Master Abell had no trouble linking MMR to ADEM in Bailey Banks’ case. But linking his ADEM to PDD/ASD was more difficult.

So, lets rewind a little. Bailey was awarded a payment because he was found to have suffered vaccine induced damage. Cool. Thats the system working as it should – a child is damaged by a vaccine, they get compensated. What the MMR vaccine was established to have done in Bailey’s case was cause something called ADEM. What McCarthy, Carrey, Kennedy and David are now all claiming is that this ADEM resulted in an ASD diagnosis.

They rest their case on the conclusion of Special Master Abell:

The Court found that Bailey’s ADEM was both caused-in-fact and proximately caused by his vaccination. It is well-understood that the vaccination at issue can cause ADEM, and the Court found, based upon a full reading and hearing of the pertinent facts in this case, that it did actually cause the ADEM. Furthermore, Bailey’s ADEM was severe enough to cause lasting, residual damage, and retarded his developmental progress, which fits under the generalized heading of Pervasive Developmental Delay, or PDD. The Court found that Bailey would not have suffered this delay but for the administration of the MMR vaccine, and that this chain of causation was not too remote, but was rather a proximate sequence of cause and effect leading inexorably from vaccination to Pervasive Developmental Delay.

On the fact of it, it looks like they are right. But they aren’t.

Bailey has a diagnosis of PDD-NOS (Pervasive developmental disorder not otherwise specified) which is indeed a subtype of ASD.

However, whilst PDD-NOS is a subtype of ASD (alongside autism etc). ASD is in turn a subtype of PDD. As the National Dissemination Center for Children with Disabilities notes, the term PDD actually refers to a category of disorders and is not a diagnostic label. So when Abell refers to Bailey’s vaccine induced ADEM as leading to PDD he is not referring to ASD. He is referring to PDD. Not PDD-NOS, which _is_ a subtype of ASD but PDD, of which ASD itself is a subtype. Or, to quote Wikipedia:

PDD-NOS is often incorrectly referred to as simply “PDD.” The term PDD refers to the class of conditions to which autism belongs.

Abell made something of a worrying statement in his conclusion. I’ll quote from David Kirby:

Abell also chided MacDonald for his assertion that “all the medical literature is negative” in regards to an ADEM-PDD link. “However, soon thereafter, he corrected this statement by clarifying, ‘I can find no literature relating ADEM to autism or [PDD],'” Abell wrote. “It may be that Respondent’s research reveals a dearth of evidence linking ADEM to PDD, but that is not the same as positive proof that the two are unrelated, something Respondent was unable to produce. Therefore, the statement that ‘all the medical literature is negative’ is incorrect.”

Was any evidence that there _is_ a link between ADEM and PDD produced? I’ll have to read through more carefully. Its worrying that the SM is reduced to ‘chiding’ a witness for such a thing as a clarification of terms. Wasn’t he more worried that there was an extreme lack of evidence linking ADEM to PDD at all? Did Petitioners produce _any_ evidence that there was a link? A quick search of PubMed reveals nothing for ‘ADEM autism’ or ‘ADEM PDD’. I don’t want to second guess a Special Master but it does make me worried that maybe he simply didn’t get some of the science.

David also lists some of the symptoms of ADEM:

Symptoms usually appear within a few days to a couple of weeks. They include: headache, delirium, lethargy, seizures, stiff neck, fever, ataxia (incoordination), optic nerve damage, nausea, vomiting, weight loss, irritability and changes in mental status.

None of these say autism to me. I also did fine one ADEM paper in PubMed together with measles:

We report a seven year old male with measles associated acute disseminated encephalomyelitis (ADEM) despite having received measles vaccination in infancy. The diagnosis was based on serum antimeasles antibodies and MRI brain. The patient was managed with high dose corticosteroids along with supportive measures. There was a complete neurologically and physica recovery.

There was a complete mental and physical recovery. This doesn’t seem to indicate causation or autism.

In my opinion based on what I’ve read so far here we have a little boy who either already had or was on the cusp of PDD-NOS. He was also vaccine damaged resulting in ADEM….and thats where the link breaks down. It might be enough for 50% and a feather but the fact that PDD is not PDD-NOS, together with the total lack of any evidence I can see to link ADEM to PDD, let alone PDD-NOS speaks volumes.

David Kirby didn't look before he leapt

7 Dec

On Wednesday 3rd December, Ginger Taylor sent an email around to a maillist of journalists she maintains contact with saying:

Last spring I wrote to you and told you to be on the look out for the story of Hannah Poling, who was the first child with autism to be paid from the vaccine injury compensation fund. In the months following the Poling story, we found that she was actually at least the tenth child with autism compensated for her vaccine injuries by the government, but only the first to go public. Her case caused a profound shift in the public recognition of vaccination as one of the causes of autism.

I am writing to you today to let you know that tomorrow another story of equally profound weight will be breaking.

Specifically that the Department of Defense now holds the position that autism is one of the adverse reactions to the DTaP vaccine. In addition, The US Armed Forces Institute of Pathology holds that thimerosal is likely a cause of autism and recommends methyl B12 and chelation as the course of treatment for this mercury exposure

This entry is about the DoD story here but I really can’t let the Hannah Poling reference go by without a few notes. Hannah Poling was _not_ the first child with autism to be paid from the Vaccine Injury fund, a story first broken by Kathleen on her blog. And please note that yes, these kids had autism and yes these kids had vaccinations. And thats it. No link was ever made. This is just the same as the Hannah Poling case where no court or HHS employee has stated that Hannah’s autism was caused by her vaccines despite the numerous claims that they have. if anyone ever tells you they they have, ask for them to provide a link. All these cases are once you get right down to it are dressed up cases of correlation being presented as causation.

Anyway.

Following Ginger’s email, the next day found David’s blog post on the Huffington Post asking if the Pentagon was was a voice of reason on autism and vaccines, by which he means – do they think vaccines cause autism.

During the course of the post, he cited this presentation from José A. Centeno of the U.S. Armed Forces Institute of Pathology and specifically referred to Slide 22 which I urge you to download and look at yourself (its a PDF). The slide is headed ‘Thimerosal’ and discusses sources, health effects and treatment. The health effects section states (in its entirety):

– Exposure to Hg in utero and children may cause mild to severe mental retardation and mild to severe motor coordination impairment;
– Autism?
– Dementia?

to which David asks:

My question is: Why does autism appear on a list of health effects on a slide about thimerosal, even if it is followed by a question mark?

To me its obvious: This PDF was created in 2005. . Some mainstream researchers still thought it was a slight possibility that thiomersal was involved I guess. Its further notable that even Centeno knew it was a doubtful link by the placing of a question mark after the word ‘autism’.

Lets also note that these are bullet points on a slide. I imagined the discussion at the time of presentation revolved around the debunking of the thiomersal hypothesis and it seems that was accurate.

I wondered at the time if David had actually spoken to anyone in the US military about this before passing it on to Ginger as a story of ‘profound weight’ and now, after reading David’s update on the post itself, it seems he didn’t:

UPDATE – I recently received a response to my query from Paul Stone, AFIP Public Affairs. He wrote that: “Dr. Centeno’s presentation, entititled ‘Mercury Poisoning: A Clinical and Toxicological Perspective,’ did mention Thimerosal. However, its inclusion was specifically intended to point out that although there has been some speculation about a potential association between Thimerosal and Autism, currently there is no data or science to support such a claim. Neither the AFIP nor Dr. Centeno have been involved in or conducted research on Autism.”

Its unfortunate David decided to ‘publish and be damned’ before waiting for a response from Centeno or the AFIP. Its clear that rather than a story of ‘profound weight’ this is something of a non-event. However, as is usually the case, no matter how incorrect it seems to be (and I am sure that this is _far_ from the last that will be heard about this from bloggers eager to get to the accuracy of this mini debacle) it will be quoted again and again and again from anti-vaccine believers who care little for accuracy. This will have an impact on both the well being of autism research and public health. I really hope David does the right thing and simply apologises and retracts the story.

David Kirby on mitochondral autism

1 Dec

Over the last few months David Kirby has been talking about a new paper that would be forthcoming that would postulate a link between autism and vaccines via Mitochondrial disease. He claimed to have some inside knowledge of this due to interviewing one of the co-authors.

That co-author was Richard Kelley and that paper has indeed been published prompting another excited flurry of posts from David on the Huffington Post. I know it was Richard Kelley as I’ve also been conversing with Dr Kelley via email. Following David’s initial post on the subject several months ago, amongst many other things Dr Kelley expressed:

…furor and frustration that we all feel right now is due to the very poor way in which this has been handled by several people each trying to claim an undeserved 15 minutes of fame.

It was easy to tell that here was a man who was immensely angry but was determined not to discuss any results – possible or actual – until they had gone through the rigour of peer review.

A day or so ago David published a post about this new study but I have to say that in my lowly opinion it left quite a lot unsaid and inflated the significance of what it did say.

David made much of key sentences of this paper (Cherry picking) and really the overall importance of it was a bit sidelined. For example, David says:

[This paper tackles]..The widespread misconception that Hannah’s case was “unique,” and without any bearing on other autism cases…

Whereas, the actual paper states:

Recently, there has been increased concern regarding a possible causative role of vaccinations in autistic children with an underlying mitochondrial cytopathy. For one of our 25 patients, the child’s autism/neurodevelopmental deterioration appeared to follow vaccination. Although there may have been a temporal relationship of the events in this case, such timing does not prove causation.

That one patient was, of course, Hannah Poling. Now, if there was ever ‘widespread misconception’ that mitochondrial autism was real (which I don’t believe there was) then this paper certainly adds weight to the argument that it exists. However, if David is trying to claim that this paper indicates that autism caused by vaccine fuelled mitochondrial disease is not unique to Hannah Poling then I think he has misunderstood or misread it. One out of twenty-five is pretty much the definition of uniqueness.

David then goes on to claim that this study gives weight to the claim that regressive autism is real. As it happens I agree with that. However, it should be placed in its proper context. David states:

Nearly all of the children in my book regressed into autism – a process that often began almost immediately after receiving multiple vaccinations.

Perhaps that is why the very idea of regressive autism has been cause for derision among many scientists, who insist that the parents were simply too ignorant to “notice” autism symptoms in their children earlier on.

That is, with due respect to David, simplistic and not representative of either data, or testimony. During the Autism Omnibus hearings, Professor Sander Greenland gave testimony (for the petitioners it should be noted) that clearly demonstrated that such scientists as Eric Fombonne clearly accept that regression exists and can possibly account for 28% of autism cases. Thats not exactly science being derisive of parents ideas about regression. However, it must be evaluated on a scientific case-by-case basis. As also testified to during the Autism Omnibus proceedings, parents who thought their child (Michelle Cedillo) had regressed were clearly shown to be in error when video evidence demonstrated obvious indicators of autism prior to vaccination.

However, David suggests that ‘nearly all’ the children in his book were regressive following vaccination. As Greenland showed during testimony. At most, this group of ‘clearly regressive autistics’ (autistic people who allegedly regressed following vaccines) could – at most – account for 6% of all ASD cases. If we take the numbers down to the sort of ‘low functioning only’ cases that I have heard many autism/vaccine believers in then we are down to 2% of all autism cases. This translates to approx 11,200 0 – 21 year olds in America. How this number constitutes an autism epidemic I have no idea.

David goes on:

Most of the children in my book – and Hannah Poling as well – had rather severe physical, biomedical problems associated with their regression. Again, this claim has been met with scorn by many in the medical and science communities, who say that autism is much more of a behavioral/neurological than biomedical condition. Parents and doctors who do try to treat these physical symptoms – with conventional and alternative therapies alike – are singled out for particular damnation by many of these so-called experts.

Firstly, I very much doubt that any parent who is treating a childs illness with conventional therapy has been scorned by anyone. There is however, no epidemiology that associates autism per se with the mainly toxicological and/or gastric issues most biomed parents talk about. The paper states:

Twenty-one patients (84%) had histories of major non-neurological medical problems, most commonly of the gastrointestinal system, with gastroesophageal reflux affecting nine and constipation affecting eight subjects.

The other ‘major non-neurological’ were things already associated with autism or other developmental disorders such as Prader Wili.

Lets also note that none of the symptoms listed by David would be treatable by chelation for example.

This study found 64% had GI dysfunction. This is very high and warrants further study, no doubt about that but…what relation has this to vaccines?

The claim that vaccines cause GI dysfunction revolves around the MMR hypothesis – a hypothesis that has taken an absolute battering of late. It has been established in clinical science that the findings of Wakefield et al cannot be replicated and the original findings that indicated a link were based on corrupt data. Of all the various vaccine hypotheses this is by _far_ the weakest.

There is also the fact that the GI Symptoms listed in the study are common amongst a whole range of Mitochondrial diseases and thus its hard to see what particular significance they have to mitochondrial autism.

David goes on:

VACCINES MAY PLAY A ROLE IN AUTISTIC REGRESSION IN SOME CHILDREN WITH MITOCHONDRIAL DYSFUNCTION

“Recently, there has been increased concern regarding a possible causative role of vaccinations in autistic children with an underlying mitochondrial cytopathy (cellular disorder),” the authors wrote. “For one of our 25 patients [Hannah, who DOES have autism, contrary to claims by Gerberding, Offit et al, who erroneously insisted, without ever meeting the child, that she only had “features” of autism], the child’s autism/neurodevelopmental deterioration appeared to follow vaccination. Although there may have been a temporal relationship of the events in this case, such timing does not prove causation.”

Maybe not – but one must wonder, then, why medical personnel at HHS’s Vaccine Injury Compensation Program conceded that the “cause” of Hannah’s “autistic encephalopathy” was “vaccine induced fever and immune stimulation that exceeded metabolic reserves.”

Inserts are David’s.

Lots of things to cover here. Firstly, David says “VACCINES MAY PLAY A ROLE” whereas the study authors say: “..the child’s autism/neurodevelopmental deterioration appeared to follow vaccination. Although there may have been a temporal relationship of the events in this case, such timing does not prove causation.”

I think its pretty clear that the study authors are – at best – dubious that vaccines played a role. They are simply saying what the rest of us have always said: correlation does not equal causation.

David once again insists that HHS medical personnel “conceded that the “cause” of Hannah’s “autistic encephalopathy” was “vaccine induced fever and immune stimulation that exceeded metabolic reserves.””

Where?

I asked twice in the comment thread that followed where this HHS document was and if we, the general public, could read for ourselves – and in context – these words. I am not suggesting David is lying at all. However, by his own admission David has been wrong more than once on what were previously firmly held opinions. This is nothing that should be being speculated about. We need to see this document.

Lastly, Gerberding, Offit et al were quite right to use the phrase ‘features of autism’. That is the phrase that both the HHS report and the case study (co-authored Jon Poling) used. Some say it is hair splitting but I don’t believe that saying someone has autism is the same as saying someone has features of autism. I’ve expounded on this before for those interested but suffice it to say I have a similar eye colour to Clive Owen. This doesn’t make me Clive Owen (much to my wife’s disappointment).

David goes on:

When I first reported this story, the researcher I spoke to told me there had been 30 children in the study, and two of them (8%) showed signs of brain injury from vaccines. Of the five children since excluded from the final published review, one must have been the second vaccine-related regression.

I very much think David might have been incorrect about that. I’m reasonably sure that Dr Kelley would not have referred to ‘brain injury from vaccines’. Given that the study he has just put his name to has cast doubt on that idea I don’t think its a valid idea.

There follows a series of what can only be called strawmen- this study didn’t do this, didn’t do that etc. For example:

….we now find out that nine of the children (36%) had so-called “multiple regressions,” and nothing in this review indicates that any attempt was made to determine if vaccines, febrile infections, or some other factors acted as triggers in the subsequent regressive episodes.

But in the sentence immediately before that David says:

Most of the children had regressed following illness-induced fever, the doctor told me.

The answer to the ‘question’ is right there. One regression, two regressions, twelve regressions – the Doctor states that regression followed illness-induced fever. In other words, given that these doctors know what caused the regressions why would it be necessary to look for something else? Something else that the authors have stated fairly clearly they don’t see any evidence for. However, as befits scientists discussing something both fairly new and of large public interest, they are careful:

Large, population-based studies will be needed to identify a possible relationship of vaccination with autistic regression in persons with mitochondrial cytopathies.

Thats fair enough I think. However I also think its going to be difficult. Sander Greenland made it very clear that detecting the hypothetical ‘clear;y regressive autism’ (i.e. autism caused by vaccines) was going to be next to impossible in large population-based studies, stating the the case amount was so small it would be pretty much undetectable by epidemiology. How to perform the kind of studies necessary to prove/disprove a relationship in such a small amount I have no idea. We’re basically trying to prove that vaccines trigger a mitochondrial cytopathy that leads to autism in – no matter what David thinks – is a pretty small group of people:

28% of people have a regressive form of autism. In 2003 at a LADDERS conference in Boston, Kelley postulated that 20% of regressive autism is due to mitochondrial cytopathies. CDC says that approx 560,000 of autistic people in the US are between 0 – 21. Therefore 28% of 560,000 = 156,800. 20% of 156,000 = 31,360. That’s about 5.6% of autistic children.

Rare? Not sure. Common? Hardly.

Autism Myths

11 Nov

It is my great pleasure to release my latest website – Autism Myths. Its not a blog, its more like a collection of blog posts on very specific subjects regarding autism.

Topics referenced so far are:

The IOM Are Afraid to Look At Susceptibility Groups
The Myth That Autistic Children Can’t Develop
The Myth of No Autistic Adults
The ‘Leaky Gut’ Hypothesis
The Myth of Overwhelming Immunity
Misleading Lab Reports
“Mrs Toast”
The Autism Epidemic
The Verstraten Paper
The Poling Concession
The Simpsonwood Conspiracy
The Amish Anomaly

Please use the contact page to send me comments and suggestions but if you do suggest stuff, please include a link to a blog entry that you think best dispels the myth in question. Please further note that the site is *not* just about vaccines, it is about all myths related to autism.

Expert opinions on vaccines and mitochondrial disorders

7 Nov

ResearchBlogging.orgThe Hannah Poling case has raised many questions about vaccines and metabolic disorders (of which mitochondrial disorders is a subset). Which is a way of saying, yes, the paper we are about to discuss covers more than just mitochondria. But, would you have read this if you saw the title of the paper:


Attitudes regarding vaccination among practitioners of clinical biochemical genetics

But, don’t let that stop you. The paper takes a look at questions asked by many since the Hannah Poling case went public:

The issue of vaccination in patients with diagnosed—or undiagnosed—metabolic disease has been an important question for those of us who care for patients with inborn errors of metabolism, but has come to the fore recently as an item of general interest.

While it is acknowledged that there is a lack of hard data on many questions, the paper’s authors polled experts in the field with a series of questions about vaccines. For experts, they chose members of the Society for Inherited Metabolic Disorders (for which there were 379 email addresses: that gives us an idea of how specialized this field is). They received 111 responses. But, it is worth noting that they requested one response from each group, not individual, so they consider this to be a fairly complete response.

So, what do these experts think about vaccines and their patients with metabolic disease (mitochondrial or otherwise)?

When asked, to respond to the position: ‘‘I view the risk of vaccination in known metabolic disease patients to generally be outweighed by the risk of the infectious diseases being vaccinated against”

63.2% strongly agreed
31.1% agreed
0.9% disagreed
and 0.9% strongly disagreed.

Asked about the opinion that the risk of vaccination in metabolic disease was ‘‘greater than the risk of the infectious diseases being vaccinated against”

52.9% strongly disagreed
40% disagreed
3.5% agreed
and none strongly agreed

One idea that has been floating around the autism blogosphere and discussion groups is that metabolic specialists prefer an alternate vaccine schedule. Well, only 21.3% said that they recommend the routine vaccination schedule, it is true. But, 73.1% use the routine schedule plus the annual influenza vaccination. 5.6% recommended a modified schedule. If you’ve been adding this up in your head, you already know that none indicated no vaccination.

Since this is such a key question, let’s repeat: over 90% use the recommended schedule or the recommended schedule plus the flu vaccine.

Similar trends were noted for live-virus vaccines:

45.7% recommending restriction of the practice for none of their metabolic disease patients
44.8% for a few
6.7% for most
2.9% for all of their patients

A big question that comes up often is “how many Hannah Polings are there?”, which in this community is a fairly narrow question of “how many people have had adverse reactions to vaccines resulting in autism or autistic-features”. The paper asks the more broad question, how many groups have seen a patient suffer “long-term deterioration or adverse outcome attributable to a vaccination:

78.3% ‘‘never”
8.5% ‘‘once”
12.3% ‘‘seldom”seen this in a patient

Again, this is not to say that autism or autistic features were seen, or that mitochondrial disease was the metabolic disorder linked in the deterioration. The group is more broad than that.

Now, the flip side of that coin: how many groups have seen long term deterioration from a vaccine preventable disease:

48.5% replied they had ‘‘never” seen this
12.1% ‘‘once”
33% ‘‘seldom”
3% ‘‘routinely”
3.0% ‘‘frequently seen this in a patient

Asked if whether ‘‘the benefits of the current vaccination schedule outweigh the risks to patients with undiagnosed metabolic disease in the general population,”

64.8% strongly agreed
27.8% agreed
4.6% disagreed or strongly disagreed

An open ended question was posed as to whether there were ‘‘reasonable health policy changes you would make regarding undiagnosed metabolic disease patients”. 43 groups responded, 29 said no, 4 said “no” or “not sure” and 1 suggested adding additional influenza and/or pneumococcal vaccine. A few stressed evaluation by IEM specialist in any case with deterioration after vaccination.

There is some more. All good stuff. But, I am at risk of basically copying the entire paper here if I add it.

If there is one thing to take away from this, it’s the concluding paragraph:

In summary, it is clear that the general opinion held by practitioners in the field of Clinical Biochemical Genetics favors the full schedule of vaccination for their patients. The overwhelming majority also feel that the benefits of the current schedule outweigh the risks to individuals with undiagnosed metabolic disease. Most have never observed any significant adverse event which was attributed to a vaccine reaction. Some respondents have seen the association once or seldom in their careers, but none felt it to be frequent. The fact that there were few encountered events of long-term deterioration due to a disease for which vaccination is available probably simply reflects the low incidence of those diseases, due to the effectiveness of vaccination practices. A panoply of questions remain, however, and there is a great need for more data.

B BARSHOP, M SUMMAR (2008). Attitudes regarding vaccination among practitioners of clinical biochemical genetics Molecular Genetics and Metabolism, 95 (1-2), 1-2 DOI: 10.1016/j.ymgme.2008.08.001

Sometimes the HuffPo gets it almost right

25 Oct

Regular readers will know of my concern regarding the HuffingtonPost and its clear antivax agenda. Kim Stagliano, David Kirby and (I think) Barbara Loe Fischer post there and whilst I don’t believe David has an antivax belief, I do think he is unfortunately promoting unfounded statements that feed antivax talking points (eg the claim HHS conceded vaccines caused Hannah Polings autism).

However, I was really pleased to see a post today in my Google Alerts from HuffPo that got it 95% right. Before I say why I have to clarify once again my position as a UK citizen and therefore my belief that I really shouldn’t take a position on the upcoming US elections. However, thats becoming increasingly difficult to do as I read such monumentally stupid things from McCain as:

[Sarah Palin knows]…more about autism then anyone I know…

Which I take to mean that the only person he knows with a connection to autism is Sarah Palin. Also his confused and pretty desperate looking pandering to the antivax crowd is downright annoying. But anyway.

The HuffPo post I’m referring to is Obama and autism by Elaine Hall. She describes:

Neal is my resident expert on autism. Now 14 years old, Neal was adopted from a Russian Orphanage at 23 months, and diagnosed with severe autism at age 3 . Neal is non verbal (or as we prefer to refer to him “a man of few words”) so when he speaks his truth through typing – WE LISTEN.

Me like.

Last January at one of his sessions with Darlene she asked, “”So, Neal, what have you been thinking about lately?”

“The Elections,” he typed on his Alpha Smart keyboard.

“What about the elections?” asked Darlene.

“I’m for Obama, he typed.”

“Obama? Why?”

“Obama is for Autism, ” he finished.

That evening my husband and I Googled Obama and Autism. And there it was, pages and pages from people with autism. Supporting Obama.

Me like even more.

This tells me a number of things. First it tells me that Elaine Hall and her partner are smart enough to see their autistic son as the resident autism expert. What a refreshing attitude. Second it tells me that when their expert speaks – THEY LISTEN. Also a refreshing attitude. Thirdly it tells me that someone being non-verbal does not mean they cannot communicate. I can think of more than a few people who read this blog who need that lesson drummed into their heads. Fourthly, it tells me that autistic people by and large support Obama. This means (for whatever the opinion of a non-voting Brit is worth) that I’m for Obama too.

Now, I said at the start of this piece that HuffPo only got it 95% right. They would’ve got it 100% right if they’d let Neal do the typing. However, he is only 14 and maybe thats why he’s not contributing publicly just yet. For now, I’m more than happy to read Elaine Hall’s words. This is from the front page of her website The Miracle Project:

The Miracle Project is a theatre and film arts program for children with special needs and their typically developing siblings and peers. Our mission is to provide a loving, accepting nurturing environment which celebrates and honors the unique and often unrecognized talents of these young people by guiding them through creative workshops and artistic programs.

Thank you Elaine Hall and thank you Neal. I’ll be looking out for more from both of you.

The next mito-autism case?

20 Oct

It’s been nearly a year since the first autism/mitochondria case was conceded. The question of mitochondrial dysfunction and autism has evolved significantly in the minds of the public and insiders in that time.

Shortly after the concession, Tom Powers, lead attorney for the petitions was asked

.”..whether this was a possible break in the case, he replied that the particular case dealt with a claimant who had a diagnosed mitochondrial disorder. As a result, it probably won’t have much of an effect on the other cases.”

It wasn’t really on the radar for the Petitioners.

But, that was in December of 2007. In February of 2008, the concession document was leaked, followed by TV, online and print news-stories on the topic. Coincidentally, mitochondria and autism has changed from not “much of an effect on the other cases” to some people claiming as much as 1/2 of the Autism Omnibus cases being associated with mitochondria.

We’ve seen one Omnibus test case removed from the Omnibus because, the parents claim, the child’s case needs to be argued as a mitochondrial dysfunction case. We’ve gone from diagnosing mitochondrial dysfunction involving a difficult task of many tests and specialist’s opinions, to the point where David Kirby, a blogger, claims to be identifying mitochondrial dysfunction based on parental reports. We now have self-taught “experts” ready to answer questions on discussion boards about mitochondrial disorders, one of the extreme specialties of medicine.

While this is all lamentable, we now have the first “test case” for the mitochondrial autism notion, post concession. A family is arguing mitochondrial disorder (or an oxygen depletion disorder).

The case has gone through the first steps in the Court of Federal Claims (the “vaccine court”). The case hasn’t concluded, but a decision has been published. To summarize:

First, note that the parents are representing themselves, it appears. The decision notes:

On August 29, 2008, petitioners filed a Reply to the Order, making two assertions: (1) [The child] suffered from a mitochondrial disorder and oxygen depletion disorder which a later vaccination significantly aggravated, leading to autistic like symptoms (somewhat similar to the Hannah Poling case that respondent agreed to compensate); and (2) the vaccinations which [the child] received caused him mercury poisoning from thimerosal or ethyl mercury (which is the subject matter of the second round of autism cases in the Omnibus Autism Proceeding, the first round of cases having to do with MMR and autism).

Tthey seem to be both arguing the mitochondrial disorder idea and the Omnibus thimerosal theory. In support, they gave no expert medical reports. Instead, they submitted a single paper (which presumably is supposed to cover both, very different assertions):

by D.S. Baskin, et al., entitled “Thimerosal Induces DNA Breaks, Caspase-3 Activation, Membrane Damage, and Cell Death in Cultured Human Neurons and Fibroblasts,” published in 74 Toxicological Sciences (2003), available on the internet.

That’s really thin evidence (as discussed at some length by the Special Master). Some sort of expert report should link the theory to the specific child. The parents state:

They have not filed a medical report in support of their assertion of significant aggravation of [the child’s] autistic like disorder, claiming that no doctor would risk criticism from the medical community by providing such a report.

Anyone want to volunteer some names of people who would risk the criticism?

But, seriously, diagnosing a mitochondrial disorder is not a simple task. This isn’t something a parent (or David Kirby) can do by looking for similar markers to another case. Heck, it isn’t as though all the biomarkers for the conceded case are universally accepted by mitochondrial experts.

With such little support for the case, the Special Master was forced to conclude:

Petitioners have still not proved their assertion of significant aggravation.

Basically, the decision ends with a statement that the family has not made its case, but they have a chance to come back with a status report as to what their intentions are.

They have already signaled a possible intention:

Petitioners express an interest in suing civilly.

This case is built on even thinner evidence than most internet-discussion-group claims. At least with those, there are challenge tests, porphyrin tests or some other questionable test, together with the opinion of the doctor who ordered the questionable tests to support an idea of “mercury poisoning” or some such diagnosis. But here, we seem to have: the child is autistic, therefore it is mercury and/or mitochondrial disorder aggravated by vaccines.

The Special Master gave the family information on how to contact a lawyer familiar with the vaccine court. I hope, for their sake, they did. I doubt it will have much of an effect on their case, but at least they would have some advice as they move forward to civil court–where the expenses will be charged to the family.