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Omnibus: the decisions are decisive

13 Feb

The first autism omnibus proceeding decisions are in: MMR does not cause autism, either alone or in conjunction with thimerosal.

Having said that, I can imagine that some of my readers are already accusing me of spinning the conclusions. That’s because the spin has already been put forth that the decisions are weak on the idea of general causation. Another theme is that the decisions only pertain to the test case families. But, as we will see, those ideas are the spin.

Here is a section from the From Autism Speaks statement on the Omnibus:

Today the National Vaccine Injury Compensation Program ruled that the combination MMR vaccine — with and without the preservative thimerosal — did not contribute to three particular children’s autism.

Why did they chose to say “…three particular children’s autism” when they know full well that the point of using “test cases” is to discuss general causation?

TACA is less subtle:

The fact that it took this long for these three decisions has to mean that the vaccine injury evidence had some merit. Poor evidence would have produced a negative decision very quickly.

The fact that they took a long time to decide indicates a tough decision? Either they didn’t read the actual decisions or they are deliberately trying to muddy the waters. Seriously. The comments in the decisions are so clear, so decisive, that one just can not make the TACA statement in good conscious.

Take a look at what the special masters actually said. Granted, there are hundreds of pages of decisions and I am picking a few paragraphs out, but I think you will agree–the statements are very (very!) clear. The decisions were not close. It was not a struggle for the special masters to come to these conclusions.

From the conclusion of the Cedillo case by Special Master Hastings:

This case, however, is not a close case. The overall weight of the evidence is overwhelmingly contrary to the petitioners’ causation theories. The result of this case would be the same even if I totally ignored the epidemiologic evidence, declined to consider the video evidence, and/or excluded the testimony of Dr. Bustin. The result would be the same if I restricted my consideration to the evidence originally filed into the record of this Cedillo case, disregarding the general causation evidence from the Hazlehurst and Snyder cases. The petitioners’ evidence has been unpersuasive on many different points, concerning virtually all aspects of their causation theories, each such deficiency having been discussed in detail above. The petitioners have failed to persuade me that there is validity to any of their general causation arguments, and have also failed to persuade me that there is any substantial likelihood that Michelle’s MMR vaccination contributed in any way to the causation of any of Michelle’s own disorders.

emphasis in the original.

Take a couple of lines out, shall we? Starting with, “…not a close case”. He even emphasized it with italics.

“The overall weight of the evidence is overwhelmingly contrary to the petitioners’ causation theories. ”

and

” The petitioners’ evidence has been unpersuasive on many different points, concerning virtually all aspects of their causation theories, each such deficiency having been discussed in detail above. ”

This is a clear and decisive decision, not doubts about it.

From another section of the decision, this one entitled Summary concerning general causation issue

For all the reasons stated above, I conclude that the petitioners have failed completely to demonstrate that it is “more probable than not” that the MMR vaccination can be a substantial factor in contributing to the causation of autism, in individuals suffering from regressive autism or any other type of autism. To the contrary, the evidence that I have reviewed makes it appear extremely unlikely that the MMR vaccine can contribute to the causation of autism. It is clear that the causation theories themselves are weak, not just the case in specific for Miss Cedillo.

I expect fragments like “extremely unlikely” to be taken out of context.

An entire section of the decision (page 34) is titled, “I have found above that petitioners general causation theory concerning immune damage is without merit.”

As to part (1) of petitioners’ three-step theory (see previous paragraph), I have already explained in detail, at pp. 22-34 of this Decision, why I have found no merit in the petitioners’ theory that thimerosal-containing vaccines in general can damage infant immune systems.

Doesn’t bode well for the next three Omnibus test cases, does it? The second three focus on thimerosal alone.

Back to MMR, there are two more decisions. From the concluding paragraph to the Hazlehurst decision, by SM Campbell-Smith,

Having carefully and fully considered the evidence, the undersigned concludes that the combination of the thimerosal-containing vaccines and the MMR vaccine are not causal factors in the development of autism and therefore, could not have contributed to the development of Yates’ autism.

Again, for emphasis, let’s pull a phrase out: “the undersigned concludes that the combination of the thimerosal-containing vaccines and the MMR vaccine are not causal factors in the development of autism”

From the Snyder case,

To conclude that Colten’s condition was the result of his MMR vaccine, an objective observer would have to emulate Lewis Carroll’s White Queen and be able to believe six impossible (or, at least, highly improbable) things before breakfast. The families of children with ASD and the court have waited in vain for adequate evidence to support the autism-MMR hypothesis.

Pretty strong words, but I can see some people saying that there is the indication that it is just “highly improbably” raised to the sixth power. “Highly improbably^6 is not zero!” we will hear.

From another section, specifically addressing the general causation question:

However, the problems with the case presented by petitioners for general causation are overwhelming. The quality of the petitioners’ experts paled in comparison to the world-class experts proffered by respondent. The theories petitioners’ experts advanced lacked support in both logic and research. As Dr. Ward testified, an hypothesis has a life span. An hypothesis may be biologically plausible at the time it is first advanced. As evidence accumulates, the hypothesis may be strengthened or weakened. The MMR hypothesis may have appeared biologically plausible at its inception, but the accumulating body of scientific evidence has tipped the scales decisively against it. Snyder Tr. at 975. The weight of the scientific evidence is that the measles vaccine virus plays no role in the pathogenesis or triggering of autism. I thus conclude that petitioners have failed to demonstrate that the MMR vaccine can cause autism, even in the highly circumscribed subset of children with regressive ASD and gastrointestinal symptoms.

Again, for emphasis, here is a line pulled from the above “The weight of the scientific evidence is that the measles vaccine virus plays no role in the pathogenesis or triggering of autism”

It will be frustrating to watch the spin continue. I expect to hear “The decisions weren’t really that decisive” for some time to come.

But, the fact of the matter is that these decisions are clear and, well, decisive.

This is not just a statement about the spin-factor, by the way. The vaccine lawyers have just done millions of dollars worth of groundwork for their appeal and later civil cases on the taxpayer’s dollar. The fact that the Court of Federal Claims has issued such incredibly strong decisions makes it much more difficult for those cases, especially the civil cases, to actually go to trial.

Arthur Allen chimes in on the Omnibus

13 Feb

I hate to give away the title, but I will,

In Your Eye, Jenny McCarthy

here’s the first paragraph. I like the fact that he brings it back to the important question, will this help with vaccine confidence?

The three federal judges who convincingly rejected the theory that vaccines cause autism delivered a devastating blow to crank science today. The battle will go on in the blogs and in the courts. But the most important arena has always been the space between the ears of parents who are deciding whether it’s safe to vaccinate their kids. This decision could do a heap of good by stemming the tide of vaccine-shunning that has led to outbreaks of preventable disease.

Go over, take a look.

Cedillos, Hazlehursts, Snyders

12 Feb

Three brave families who were placed in harms way not by an MMR injection but by a string of bad doctors, worse autism/antivax organisations and really terrible witnesses. A combination of these three factors placed these three families – they who stood for the utterly discredited idea that MMR/thiomersal or MMR alone cause autism – into harm the likes of which said doctors and founders of autism/antivax orgs will never have to face. I recall hearing that the Cedillo’s had taken out a second mortgage on their home to enable them to attend the legal proceedings.

I wonder if the leading autism/antivax groups will have enough about them to pony up to support the Cedillo’s for the rest of their lives? They should, they hung them out like a banner to wave.

This is from the Washington Post:

The decision by three independent special masters is especially telling because the special court’s rules did not require plaintiffs to prove their cases with scientific certainty — all the parents needed to show was that a preponderance of the evidence, or “50 percent and a hair,” supported their claims. The vaccine court effectively said today that the thousands of pending claims represented by the three test cases are on extremely shaky ground.

In his ruling on one case, special master George Hastings said the parents of Michelle Cedillo — who had charged that a measles, mumps and rubella (MMR) vaccine caused their child to develop autism — had “been misled by physicians who are guilty, in my view, of gross medical misjudgment.”

Hastings pinpoints the Geier’s, Krigsman and Wakefield by name in his verdict.

And here’s Special Master Vowell from the Snyder test case:

“After careful consideration of all of the evidence, it was abundantly clear that petitioners’ theories of causation were
speculative and unpersuasive.”

….

To conclude that Colten’s condition was the result of his MMR vaccine, an objective observer would have to emulate Lewis Carroll’s White Queen and be able to believe six impossible (or, at least, highly improbable) things before breakfast.

And here is Special Master Campbell-Smith from the Hazlehurt test case:

Because the linchpin of petitioners’ theory, the finding of persistent measles virus in the biopsied tissue taken from the gastrointestinal lining of autistic children, is glaringly unreliable, the basis for Dr. Corbier’s opinion that the MMR vaccine was causally related to Yates’ autism and his gastrointestinal symptoms is critically flawed and scientifically untenable. Petitioners have failed to prove that their theory of vaccine-related causation is biologically plausible as required by the first prong of Althen. Nor have petitioners demonstrated that the unsupported links of their proposed causal chain cohere to establish a logical sequence of cause and effect as required by the second prong of Althen. Having failed to satisfy their evidentiary burden, petitioners cannot prevail on their vaccine claim.

I should be happy that science has prevailed and I am to a certain degree. The fact that the Vaccine Injury Court demands a very, very low standard of proof should indicate clearly and concisely just how good the rubbish submitted as science was for these kids cases.

I can’t be happy and I can’t take any pleasure in the fact that these kids and their families have been coldly, cynically used by those who demand against all reason that vaccines cause autism. How could any right thinking person? These parents are penniless and will no doubt be coerced into taking part in a shame of an appeal, then civil cases. Civil cases where the standard of science is very much higher. I hope they step back and consider carefully the verdicts of the Special Masters, the horrendous quality of their so-called ‘expert’ witnesses and the utter lack of any science to support them.

Omnibus decisions in–acknowledging the test case families

12 Feb

The Omnibus decisions on MMR are in. Answer: no. Clearly no, they did not find that MMR with or without thimerosal cause autism. The court found that the cases were without merit.

This will obviously be a topic much discussed in the next few days. But, for right now, I’d like to acknowledge the bravery of the families who allowed their stories to be the “test cases” for the omnibus: the Cedillos, the Hazlehursts and the Snyders.

Yes, I agree with the decisions by the Court. Yes, I think the vaccine question has and will continue to sidetrack the greater autism community from more important efforts. But, the Court made a point in the decisions that the families stepped forward with good faith.

They put their lives in the public eye. They can appeal (and I expect it will happen). But they can’t do what the Krakow’s did, and what appears to be an option for the rest of the Omnibus families: change the story and resubmit to the court.

It was a good decision, and good for the autism community as a whole. For me, I’m taking at least a day to process before blogging the decision. In that time, I’d like to acknowledge that the Cedillos, the Hazlehursts and the Snyders put themselves on the line for what they believe in. They did it to try to help other families. I can disagree with them and still acknowledge the bravery of that action.

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.

Can Children with Autism Recover? If So, How?

2 Dec

An interesting new study with that very title found its way into my inbox last month. I’ve taken awhile to blog about it whilst I read, re-read, re-re-read, re-re-re-read it (its 23 pages long – 28 with references) and swapped emails with the lead author and approached an understanding of its implications.

Here’s the abstract:

Although Autism Spectrum Disorders (ASD) are generally assumed to be lifelong, we review evidence that between 3% and 25% of children reportedly lose their ASD diagnosis and enter the normal range of cognitive, adaptive and social skills. Predictors of recovery include relatively high intelligence, receptive language, verbal and motor imitation, and motor development, but not overall symptom severity. Earlier age of diagnosis and treatment, and a diagnosis of Pervasive Developmental Disorder-Not Otherwise Specified are also favorable signs. The presence of seizures, mental retardation and genetic syndromes are unfavorable signs, whereas head growth does not predict outcome.

Controlled studies that report the most recovery came about after the use of behavioral techniques. Residual vulnerabilities affect higher-order communication and attention. Tics, depression and phobias are frequent residual co-morbidities after recovery. Possible mechanisms of recovery include: normalizing input by forcing attention outward or enriching the environment; promoting the reinforcement value of social stimuli; preventing interfering behaviors; mass practice of weak skills; reducing stress and stabilizing arousal. Improving nutrition and sleep quality is non-specifically beneficial.

There’s a number of issues that I found interesting about this paper. First was the identities of two of the co-authors – Marcel Kinsbourne (testified for the plaintiffs in the Autism Omnibus) and Martha Herbert (testified that mould causes autism – case lost).

Second was the criteria used to define ‘history of autism’ and also to define ‘current functioning’. Both seemed pretty stringent to me. First ‘history of autism’ (study members were currently aged between 8 – 18 by the way):

By history: (1) The child was diagnosed with an ASD in early childhood (i.e., by age 5) by a specialist (i.e. someone whose practice is at least 50% devoted to autism). (2) There was early language delay (either no words by 18 months or no word combinations by 24 months). (3) Review by one of our team, blind to current group membership, of early reports (age 2–5) and/or videotapes, with diagnostic formulations elided, confirms early ASD.

Second, ‘current functioning’:

By current functioning: (1) The participant does not meet criteria for any Pervasive Developmental Disorder, including PDD-NOS (at least one symptom in social domain plus one additional symptom), which generally means that no social symptom of ASD is present by best clinical judgment. (2) The participant does not meet ASD cutoff on social or communication domain of the Autism Diagnostic Observation Schedule, (3) any special education services the participant receives are to remediate difficulties with attention, organization, or specific academic difficulties and not to address features of autism, (4) the participant is functioning without an individual assistant in a regular education classroom, (5) VIQ, PIQ, and FSIQ are all at 78 or above (1.5 standard deviations below average), (6) Vineland Communication and Socialization Scales are all at 78 or above.

So recovery is indicated by moving from stage 1 to stage 2. I hope others can give their own opinions in the comment section as to how stringent the two criteria are but it seems fairly impressive to me.

So what happened with these kids? How did between 3 – 25% become recovered (by the terms of the study)?

1) Having relativelyhigh intelligence,
2) Having receptive language
3) Displaying verbal and motor imitation
4) Displaying motor developmentbut
5) Earlier age of diagnosis and treatment
6) Having a diagnosis of Pervasive Developmental Disorder-Not Otherwise Specified
7) Use of behavioral techniques (there is a section in the paper expressing caution over the veracity of this finding or at least, its my understanding that there is).

Interestingly, overall symptom severity plays no part in recovery and neither does head growth.

The presence of seizures, mental retardation and genetic syndromes are unfavorable signs.

Something else that seems to play no part:

The recovered children studied by us and others, and described above, however, have generally not received any biomedical intervention.

I was (obviously) particularly interested in this so I asked the author about vaccination status. The reply was:

Complete medical histories were taken, including vaccination status, and had it turned out that our optimal outcome sample hadn’t been vaccinated or had by and large received chelation, we certainly would have reported that…

Its a fascinating paper, not least to me personally as it indicates once and for all that vaccinated kids can (and do) recover without biomedical interventions, thus indicating the vaccination plays no causative role in autism.

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.

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