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Why is David Kirby grasping at straws?

9 Jan

Once more for the record, I like David. I tried very hard to get to see him in London last time he was over and we’d arranged to meet up for a drink but due to my family situation it wasn’t to be. However, I cannot let that stop me from recalling that we have very differing views on a wide range of things to do with autism and vaccines.

I have noticed of late a tendency for David’s HuffPo blog posts to be more than usually full of ‘if’ ‘maybe’ ‘might’ etc. However his skill as a writer buries these ambiguities and makes them appear certainties. I’m not even sure its a concious thing for David. His need to write well sometimes (I think) obscures a clinical need for precision in such delicate areas as he and I write in.

With that in mind, I recalled a post of his from November 2008 entitled ‘Tom Daschle: Friend to Many Autism Families’ in which he describes Mr Daschle thusly:

By nominating Tom Daschle to head up the Department, President Elect Obama has selected a man who has demonstrated an unflinching willingness to question vaccine safety, and to fight for the rights of those people who believe they have been, or may be, seriously injured by certain vaccinations.

I think David might’ve been trying to insinuate that Tom Daschle’s nomination was good for the autism/antivaccine community. Certainly however, as with the autism/antivaccine’s belief that RFK Jr would be appointed by Obama, this nomination might not be quite what that community is expecting. As blogged by Orac today, Daschle’s true feelings on vaccinations were spelt out by the man himself:

Immunization is probably as — as sound an investment as we can make in good health. I can’t imagine that we could do any better than ensure that every — every child is immunized, and that we understand the importance of — of broad-based immunization and the tremendous good health that can come from it.

Following that, David made a fairly innocuous presentation from a US Army scientist look much more sinister than it actually was. He claimed that the army listed autism as a possible ‘health effect’ of mercury/thiomersal. It turned out that that was not actually the case.

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.

After that was the recent debacle when David mixed up Change.org and Change.gov – the latter being a website of Obama. The former a privately owned enterprise for at least the last 2 years. David thought (and committed to a blog post) that Obama had hired pro-neurodiversity bloggers and he imagined a conversation Obama might have with an autism parent:

It is hard to imagine the President one day saying…“I do not think we should devote resources to finding out what happened to your [autistic child]. I do not believe there is anything we can do to help him, and it is not desirable to even try.

This post made me sad and angry. I thought better of David than that. To say that any of us who do not believe vaccines cause autism do not think it is desirable to help our autistic children is massively insulting. I hope someday David can maybe spend a bit of time with parents who don’t think vaccines caused their child’s autism and see for himself how we help our kids. And maybe an apology might be forthcoming also.

David’s latest faux pas is regarding the latest MIND institute study. In a post entitled ‘UC Davis Study: Autism is Environmental (Can We Move On Now?)’ David says:

Autism is predominantly an environmentally acquired disease, the study seems to conclude. Its meteoric rise, at least in California, cannot possibly be attributed to that shopworn mantra we still hear everyday, incredibly, from far too many public health officials: It’s due to better diagnosing and counting.

The autism epidemic is real, and it is not caused by genes alone: You cannot have a genetic epidemic. It really is time that we, as a society, accept that cold, hard truth.

Here’s the full conclusion:

Autism incidence in California shows no sign yet of plateauing. Younger ages at diagnosis, differential migration, changes
in diagnostic criteria, and inclusion of milder cases do not fully explain the observed increases. Other artifacts have yet to be quantified, and as a result, the extent to which the continued rise represents a true increase in the occurrence of autism remains unclear.

Lets look at that last again:

…the extent to which the continued rise represents a true increase in the occurrence of autism remains unclear.

And yet David seems to to think its crystal clear. The paper itself also contains some direct and fairly easy-to-check errors. For example:

The inclusion of milder cases has been suggested as an explanation for the increase in autism. Neither Asperger’s
syndrome nor “pervasive developmental disorders not otherwise specified” qualify under the category of autism in the DDS system.

Here is what DDS passed on to me in Summer of 2007. I promised not to attribute the quote to an individual so I won’t, but you can email DDS yourselves and ask them.

The current CDER was written in 1978 and updated in 1986, which is why the language is so out of date ( e.g., Residual Autism). California has clinicians in the field who are, of course, using modern criteria in their assessments but then they have to go backwards and try to fit those kids into the 1986 CDER. So you are going to have Aspergers kids, PDD-NOS kids in both categories 1 and 2. Categories 1 and 2 are called ‘Autism.’ But because there are so many clinicians, using lots of different techniques for evaluation, there is a lot of inconsistency and enrollment figures should not be misused as epidemiological data.

Hertz-Picciotto might also be interested in a quote from Rita Eagle PhD of the California Dept. of Developmental Services (DDS) to Journal of Autism and Developmental Disorders, Vol. 34, No. 1, February 2004:

To many clinicians, it appears that more and more children who, in the past, would never have been referred to the regional centers for example, bright but anxious and slightly socially inept kids with average or better IQs and children who, in the past, had been or would have been diagnosed as ADHD, OCD, ODD, anxiety disorder, learning disabilities, psychotic, and so forth are now being diagnosed wit high-functioning autism and/or Asperger syndrome and referred to the regional centers for services.

Truth is that a lot of Hertz-Picciotto 2009 is simply wrong. For an extensive overview of why, please read Joseph’s technical takedown from which I’ll quote his conclusion:

H-P et al. is a surprisingly poor paper. It does not produce any new data in order to support its two main results. It makes an apples-to-oranges comparison between a Finnish epidemiological study and California DDS ascertainment over time. It tells us the obvious about “milder” cases. In the end, I don’t think this is an improvement over the 2002 MIND Institute report to the California Legislature. In fact, it could very well be worse.

The way H-P et al. have gone about trying to show there’s a real rise in autism incidence over time is not a very good way to go about doing things, in my view. There are other ways. For example, I’ve suggested trying to replicate Lotter (1967) in detail. This would not be as easily challenged.

David closes his latest error prone piece with:

But the sooner our best minds in science and medicine come to grips with the fact that these poor, hapless kids have been exposed to the wrong environmental toxins and/or infectious agents at the wrong time, the sooner we can find out how to best treat what really ails them.

This is a prime example of bad science leading the media. David has reported on a paper that has made fairly bad errors and taken them at their word. Sadly, this sort of thing will only continue as long as institutions like MIND (controlled by a man who is dedicated to proving vaccines cause autism) churn out error strewn papers.

New MMR and autism study: no correlation

29 Dec

OK so its not the greatest idea to blog about just an abstract but I hope to have more to bring you soon.

This new study states (again) that there’s no correlation between MMR and autism. In fact, the abstract in its entirety reads:

The MMR vaccination coverage in Malopolskie voivodeship improved rapidly and finally reached a high level during last years. The number of new cases of autism spectrum disorders in children during that time revealed a slightly rising but not significant trend, while the number of childhood autism were stable. Ecological study showed no correlation between MMR vaccination and an increased risk of childhood autism and autism spectrum disorders in children.

Clearly they’re using the phrase ‘autism spectrum disorders’ to mean to everything autism related and the phrase ‘childhood autism’ to refer to what the medical community refer to as ‘severe’ or ‘low functioning’ type of autism.

Now, this study is Polish, written in Polish. I have written to the lead author asking if they have, or expect to have, an English translation and if so if I could have a copy.

But still – the message is clear – there is no correlation between autism and MMR. Neither at ‘general’ ASD level, nor at specific ‘severe’ level.

In 2005, The Cochrane Library performed a meta-analysis and systematic review on Vaccines for measles, mumps and rubella in children. Although it had some harsh things to say about the design of studies trying to track adverse events vs fulfilment of role of the vaccine it was also emphatic in its verdict regarding the MMR and autism:

Exposure to MMR was unlikely to be associated with Crohn’s disease, ulcerative colitis, autism or aseptic meningitis (mumps) (Jeryl-Lynn strain-containing MMR)

So why am I bringing this back up again? Well, because I want to ensure that I understand the role of the Cochrance Library and I want to explain why the term ‘systematic review’ _matters_ so much. For this, I am indebted, once again, to Ben Goldacre’s truly excellent Bad Science – the book.

A meta-analysis is a very simple thing to do, in some respects: you just collect all the results from all the trials on a given subject, bung them into one big spreadsheet and do the maths on that…

….

So, if there are, say, ten randmoised placebo-controlled trials looking at whether asthma symptoms get better with homoeopathy, each of which has a paltry forty patients, you could put them all into one meta-analysis and effectively (in some respects) have a four-hundred-person trial to work with.

Now, the good thing about meta analysis is that it excludes papers of poor quality. Here’s Ben’s example – with Homeopathy again:

A landmark meta-analysis was published in the Lancet….they found, overall, adding them all up, that homeopathy performs no better than placebo….The homeopaths were up in arms…they will tell you its a stitch up….what [the authors] did, essentially, like all negative meta-analysis of homeopathy was to exclude the poorer quality trials from their analysis.

All quotes, Bad Science, pages 54 to 57.

Sound familiar?

So, back in 2005, a meta-analysis was performed by the Cochrane Library on MMR and one of its results was that:

Exposure to MMR was unlikely to be associated with Crohn’s disease, ulcerative colitis, autism or aseptic meningitis (mumps) (Jeryl-Lynn strain-containing MMR)

So – where do we go now? Do we really need to keep on churning out results and studies until every last person on the earth gets the point? Or do we cut our losses, accept that there will always be some idiots who will never get it and…move on….to a research future where we can get back to thinking about autism, how we can help autistic people to live their lives and hopefully a future where children don’t die of vaccine preventable diseases.

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.

Measles rising thanks to MMR/autism idiots

29 Nov

There’s a whole bunch of flat-earthers who insist despite all scientific evidence – both epidemiological and clinical – to the contrary that MMR causes autism. Jenny McCarthy for example.

In the UK this belief started 10 years ago thanks to the pomposity of Andrew Wakefield’s grandstanding and utterly fact-free press conferences insinuating a link between MMR and autism. Being of a generous nature, Wakefield decided to share his wisdom with America – this means that the Americans can look forward to sharing in the good tidings:

Fears that up to 100,000 children in England could be infected with measles in a major epidemic were raised today after government figures showed a sharp rise in cases of the disease.

The number of measles cases in England and Wales so far this year has exceeded 1,000 for the first time since 1995, according to the Health Protection Agency (HPA).

But so what right? Measles is nothing!

One in 2,500-5,000: Death
One in 10: Hospital treatment
One in 1,000: Meningitis

So, no. Measles isn’t ‘nothing’ its a disease that 10% of the time hospitalises people at the very least.

Lets be absolutely clear what the MMR/autism flat-earthers are doing here. By living in denial about the science that has clearly established no link between the measles component of MMR and recommending ‘spacing out’ vaccine schedules, or not having the measles component at all and going with an ‘alternative’ vaccine schedule these idiots are directly placing your child and you in the firing line of what is a fatal disease.

If your child has not been vaccinated with MMR, please – please – take them now. Don’t let the flat-earthers get away with it.

If you’re an MMR/autism idiot please take yourself and your brood off to an island somewhere where nobody else lives and where the rest of us don’t have to share the consequences of your idiocy.

Paul Shattock gets his Biatch on

29 Nov

Alongside the error strewn Edelson piece that I already blogged about, Communication also ran a response from Paul Shattock that avoided Edelson’s mistakes of making factual errors about chelation and Tariq Nadama by simply going for a handbag wielding biatch attack more suited to Paris Hilton sulking about Nicole Ritchie wearing the same dress as her:

Although of no relevance, Michael Fitzpatrick’s views on biomedical approaches designed to
ameliorate some difficulties experienced by people with autism, and on me personally, are widely disseminated in newspaper and magazine articles and blogs. I remain unenthusiastic about encouraging
discussions of my personal inadequacies in Communication.

Miaow! Paul Shattock’s lip trembles with rage as he considers the lack of worth of Michael Fitzpatrick’s opinion.

Actually, I can’t recall on part of Mike’s book that espoused any views on Paul Shattock. Having just done a quick check, I see that he appears 3 times. Once in the Preface, once on page 71 and once on page 118. On _none_ of these occasions does Mike express any opinions on Paul Shattock.

He goes on:

Evidence of efficacy for many interventions from appropriate and scientifically valid research-based protocols is being published.

Hear we go again. ‘Is being published’. How long has the autism community been hearing this? Tell us _when_ Mr Shattock, or preferably, refer to supporting material that _has_ been published in a decent journal. And what ‘interventions’ are we talking about? Mr Shattock is utterly ambiguous.

Shattock then goes on to claim that the entire membership of NAS wants research into such things. I can assure him thats nowhere near true. I can think of several NAS members who want to *move on* from this never ending promise of science that is always ‘coming soon’ and yet never arriving.

Shattock goes on:

The American Academy of Paediatricians (AAP) is now actively investigating the usefulness of such interventions and members of the American Academy of Paediatric Gastroenterologists (AAPG) are currently collaborating with the Autism Society of America (ASA) and the Autism Research Institute (ARI) in investigating gastrointestinal issues.

I think Mr Shattock maybe overestimating the AAP’s keenness to stay chummy with ARI. I also can’t find any org called the American Academy of Paediatric Gastroenterologists so I can’t comment on how closely they’re working with ARI, or if they exist at all.

Shattock fumed on:

Professor Rutter, at the recent NAS conference, drew attention to the need to investigate environmental factors and mechanisms involved in triggering autism and to study dietary
treatments for autism.

Mike Stanton saw Rutter at that conference. He didn’t mention what Shattock reports but there’s nothing particularly earth shattering about the idea of environmental factors and mechanisms being involved with autism – except we all know what Shattock, one time warm-up man for Andrew Wakefield, really thinks these are, and for those there is no evidence and I also doubt Rutter has any truck with these ideas either.

Its an odd, petulant semi-rant from Shattock. I have no idea what use he thinks it will be to seemingly purposefully misinterpret Mike’s words. It should be easy to refute Mike – stop talking about studies that will be published and get on with publishing them. Science is the final arbiter of scientific ideas, not a mudsling from someone on the edge of scientific ideas regarding autism.

Stephen M Edelson gets it wrong, wrong, wrong…

25 Nov

Communication is the members mgazine of the UK’s National Autistic Society. In an issue earlier this year, Mike Fitzpatrick, GP and author had an extract from his latest book published.

The extract touched on chelation and the death of Tariq Nadama.

This prompted a bilious response this month from Stephen M Edelson in this months Communication. The level of ignorance in his response is astounding. I have attached the whole response as a Word document to save me getting accused of taking things out of context. BUt for here, I’ll quote selected parts.

Fitzpatrick has been a longtime, outspoken critic of chelation. (Chelation involves a medication, such as DMPS or DMSA, which removes neurotoxic heavy metals, such as lead and mercury, from the body; it is given under the supervision of a doctor.) If an individual tests with very high levels of one or more heavy metals, chelation is the treatment of choice throughout the medical profession.

If test results indicate very high levels in someone on the autism spectrum, isn’t this person entitled to the same medical care as someone without autism?

This is far too simplistic. Of _course_ if someone on the spectrum has test results that indicate high levels of metals they should have the standard treatment. That is a strawman.

The _point_ is rather more complex that that as Mike mentions in his book and I have blogged about numerous times.

The labs that Mr Edelson and his DAN! colleagues recommend test for levels of metals in people on the spectrum very, very often give false results. Take this extract of the testimony of Dr Jeffrey Brent, a sub-specialty board certified medical toxicologist and the former President of the American Academy of clinical Toxicology.

…I have seen a number of patients now come to me because of these ‘doctor’s data’ type of laboratories which are based on urines – chelated urines – and they always have high leads in their chelated urines and I tell them ‘well, lets just do the gold standard test, lets get a blood/lead level and so far, *100% of the time they’ve been normal*.

So when ‘these Doctors Data’ type of labs do the tests they indicate the need for chelation. When _experts_ in the field such as Dr Brent do the gold standard tests ‘100% of the time they are normal’.

Dr Edelson needs to realise that _that_ is why chelation is an invalid treatment for autism. The fact that when taken to an expert in Chelation and Toxicology, the results usually indicate that chelation is not warranted.

Edelson continues:

In his article, Fitzpatrick brings up the accidental death of Tariq Nadama after chelation treatment. What he does not tell the reader is that Tariq was given the entirely wrong drug, one with a similar name and label that was nearby on the office shelf. Regrettably, these drug errors do
happen in hospitals and doctors’ offices and Fitzpatrick has exploited this unfortunate incident several
times in the past without explaining the complete story. (I have already corrected Fitzpatrick in a previous issue of Communication, and I am disappointed that the editor knowingly allowed such half-truths to be disseminated to NAS’ membership once more.)

Once more, Mr Edelson is quite wrong. Tariq Nadama was not given a drug by mistake ‘with a similar label that was nearby on the office shelf’.

When Dr Roy Kerry (who joined Mr Edelsons loose affiliation of practitioners after the death of Tariq Nadama) was prosecuted for the death of Tariq, the following was admitted by him:

70. Respondent admitted that EDTA is very rare to use on children.

71. Respondent admitted to using Disodium EDTA to chelate Tariq.

72. Respondent stated to Investigator Reiser that Disodium EDTA is the only formula of EDTA he stocks in his office.

73. Respondent admitted that CaNa2EDTA is available but that he has never used this agent.

I would recommend that Mr Edelson reads the entire complaint against Dr Kerry.

Edelson continues again:

Over the past 20 years, scientists have clearly documented immune system dysfunction and gastrointestinal problems associated with autism. Many of these problems can be treated successfully using established medical treatments.

Of course, this is twaddle. I challenge Mr Edelson to provide peer reviewed journal published science to back up these statements. As recently documented by Professor Stephen Bustin, the gastrointestnal ‘link’ to autism is not valid and never was.

I wonder why these treatments that so successfully treat autistic peoples autism have never had one single (that I can find) case study published?

Update 28 Nov 2008

An update from Mike who read some of this thread:

It is true that a number of environmental factors have been identified as causing autism in a small number of cases – these include viral infections (rubella, CMV) and drugs (thalidomide, sodium valproate). What is striking is that ‘over the past decade not a single new environmental factor has been identified as playing a significant role in the causation of autism’ (Defeating Autism: A Damaging Delusion, p 81). Indeed, it would be more accurate to say ‘over the past two decades’. By contrast, over this period there have been dramatic advances in the genetics of autism. Meanwhile intensive researches into alleged vaccine-autism links have failed to confirm any causative relationship.

‘The conviction of the biomedical activists that there must be some environmental explanation for the rising prevalence of autism has grown in intensity in inverse proportion to the emergence of scientific evidence in favour of any particular environmental cause.’

Who makes up the autism community?

16 Nov

On a recent post, Sullivan asks why vaccines should be included in any strategic plan when ‘vaccines-cause-autism advocacy organizations can’t ask for it?’

Its a good point. What _I_ want to pick up on is the claim that some of the groups who co-signed the letter Sullivan refers to are in any way (as they claim to be) ‘the autism community’. Lets take a look at some of the biggest news events of the last five years related to autism.

The top stories from 2003 came in July of that year. Of the top 100, less than 10 mentioned vaccines. Of the other 90% of stories Generation Rescue mention none, SafeMinds mention none, ARI mention none, NAA mention none, OAR mention none, TACA mention none, Unlocking Autism mention none.

The biggest month for 2004 autism news was May. Non-vaccine stories (on page 1) accounted for 87%. Again, none of the above organisations discussed any of these stories.

The biggest month for autism news in 2005 was August. Of page 1 results, 19% mentioned vaccines (4 were from AoA and about 6 were about the death of Abubakar Nadama). Of the other 81%, none were mentioned by the above groups.

2006 and October is the busiest news month. 3% mention vaccines. Of the 97% of stories that don’t, the organisations above mention none.

2007 sees the busiest news month as April. Of the 93% that do not talk about vaccines, none of the above groups comment on their websites.

2008 – so far April is the busiest news month with 9 mentions of vaccines in the top 100 stories. Of the 91% not talking about vaccines, yep, you guessed it, none of the above organisations talk about the stories.

The single top story regarding autism this year was World Autism day. No mention of this on the websites of Generation Rescue, SafeMinds, NAA, ARI, OAR, TACA or Unlocking Autism.

And these are the people who claim to be the autism community?

The truth is that these people are a series of single issue groups concentrating on vaccines and autism. The truth is that fully 7 out of the 11 (63%) groups who co-signed this letter have no interest in autism beyond vaccines/toxins.

These groups do not, in any way shape or form represent the autism community. I hope the IACC see this clearly.

Why should the strategic plan include vaccines…

14 Nov

…if all the vaccines-cause-autism advocacy organizations can’t ask for it?

I’ve been watching the process for the IACC fairly closely. You may have noticed my obsession. One issue that has come up is…you guessed it, vaccines. IACC meetings have been available to listen to by phone. (thank you NIH!) I’ve listened to long…long…long…speeches about the importance of research on vaccines and mercury. It’s had very broad support from…well…Lyn Redwood and Mark Blaxill. Pretty much silence from the rest of the IACC.

That said, I can’t say I am not surprised that an 11th hour attempt to change the process. Yes, according to a letter sent to members of the IACC, “we as a community community” are “united” expressing disapproval for for the Strategic Plan in the current form. This isn’t new. In person and in letters, members of these organization have co-opted my rights into an “autism community” that supports their vaccine/mercury agenda.

But, it’s worth taking a look at the letter. Alternatively, you could trust me to tell you what I found. Better yet, let me tell you what I didn’t find: vaccines. No mention of the word vaccines…or mercury…or thimerosal…or immunization…or epidemic. I seriously had to check that the search function was working as I read that document.

Why point this out? To jab a little fun at our good friends? No, there is a much more important message here:

Take a look at the organizations that signed this letter:

Autism New Jersey
Autism Research Institute
Autism Society of America
Autism Speaks
Generation Rescue
National Autism Association
Organization for Autism Research (OAR)
SafeMinds
Southwest Autism Research & Resource Center (SARRC)
Talk About Curing Autism (TACA)
Unlocking Autism

If they can’t agree on including “vaccine”, “mercury”, “epidemic” or any variation of those words—

WHY SHOULD THE IACC INCLUDE THOSE WORDS IN THE STRATEGIC PLAN????

Seriously, there has been a big push to get the IACC to make a strong statement on the vaccine issue. And yet, these words are missing from their own letter.

So, I’ll say it again: if Generation Rescue, SafeMinds and the rest can’t agree to put “vaccines” or “epidemic” in a letter, why should the IACC bow to their wishes and include these terms in the Strategic Plan?

Defeating Autism: A Damaging Delusion

7 Nov

Dr Mike Fitzpatrick’s new book ‘Defeating Autism: A Damaging Delusion‘ is now available (Amazon: UK, US, Canada). Just as I did for Paul Offit’s Autism’s False Prophets, I’ll give this a short review and a long review.

The short review: Holy shit, this book is good. Go buy it.

OK, so the long review. I got my copy when I was but a few ten’s of pages away from finishing Ben Goldacre’s Bad Science and try as I did I simply couldn’t resist putting Ben’s excellent book aside for the duration it would take me to read Mike’s book. Ben can rest easy in that it took me only a few absorbed and fascinated hours to read Mike’s book and I will thus be back with him shortly.

Mike starts with an overview of what is to come through the rest of the book – a subject delineated overview of the last ten years or so of attempts to defeat autism.

Mike’s son (who coincidentally is the same age as my own) is introduced and we hear of the abject lack of options given to parents in the early 90’s.

The clinic staff were all sympathetic and courteous, but they appeared to have no practical suggestions……We did not return.

It was at this time that Mike came into contact with two names, now steeped in the autism alt-med industry: Paul Shattock and Bernard Rimland. Shattock liked GF/CF and Rimland liked mega-dose vitamins together with anti-oxidants and _also_ the GF/CF diet. However:

I read the papers from Sunderland and San Diego with great interest……To say I was disappointed was an understatement. What immediately struck me about the writings of Shattock, Rimland and their colleagues was that, rather than indicating an innovate approach at the cutting edge of medical science, they revelaed a retreat into the byways and cul-de-sacs of the biological psychiatry of the 1960s and 1970s.

Then, later on, Mike discusses the beating heart of this book – the delusion itself:

I have become increasingly concerned at the damaging consequences of the quest to ‘defeat autism’. The movement that has advanced under this banner on both sides of the Atlantic seeks to redefine autism as an epidemic disease caused by vaccines or some other, as yet unidentified, environmental factor. Despite the lack of scientific support for this theory it has acquired the character of a dogmatic conviction for many who uphold it, in the face of all contradictory evidence.

Mike makes no bones about the fact that he considers (rightly so in my opinion) the quest to ‘defeat autism’ to be damaging on numerous levels. It is damaging financially to parents. It is damaging to relationships. It is damaging to children’s health. But most of all, it is damaging in the attitude that the crusade itself expresses towards autistic people. Mike, I am delighted to report, quotes extensively from Frank Klein and Jim Sinclair and makes nice mentions of Autism Hub bloggers at various times.

To me, this is an ‘autistic friendly’ book. Parents are not given any empowering pity just because they are parents and the voices and opinions of autistic people are given equal space to those who are not autistic. Mike does not try to pretend that everything is rosy in the garden of autism but he does most definitely portray the need to defeat autism as damaging. This is a must read for all parents and all people involved however peripherally in the field of autism.

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