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Poling turns his back on genetics

13 Mar

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

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

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

Here’s the quote:

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

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

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

OK… I’ve got that out of my system….

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

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

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

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

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

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

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

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

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

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

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

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

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

–Dan Olmsted, September 13, 2008

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

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

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

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

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

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

Dr. Poling closes with this statement:

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

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

Fitzpatrick on the recent Wakefield news

11 Feb

Dr. Michael Fitzpatrick has written the article I wish I could have done–

The MMR scare: from foolishness to fraud?

For anyone looking to understand the timeline and the important questions raised by the Brian Deer investigations, this is a must read.

Dr. Fitzpatrick asks a very important question one must consider–if there is such a big disconnect between what the Wakefield papers report and the actual histories of the children (and the disconnects seem to be very significant), shouldn’t the journals print retractions?

Following Brian Deer’s 2004 revelations about Dr Wakefield’s conflicts of interest arising from undisclosed legal aid funding, 10 of his Lancet co-authors retracted the suggestion of a link between MMR and autism (while upholding the paper’s claim to have identified a distinctive form of bowel inflammation in autistic children). It is now clear that, given the selection bias confirmed by Deer – quite apart from his other allegations – it is not possible to make such a claim on the basis of the Lancet cases. Surely it is now time for the authors to withdraw this paper in its entirety? Perhaps the editor of the Lancet – together with those of the other journals involved – could submit Deer’s allegations to some sort of tribunal, perhaps arranged by the Medical Research Council. For 10 years the world of science has witnessed Dr Wakefield’s foolishness; now it has to ask: has he crossed the line into fraud?

Another good source on the Wakefield studies is in Paul Offit’s book “Autism’s False Prophets“.

You may recall that someone has YouTube’d Autism’s False Prophets. Yes, Story Time with Darwin. If you have problems reading or just want to listen in to the sections on Dr. Wakefield, give “Story Time” a try.

There are a LOT of blogs discussing this. I Speak of Dreams is keeping a running list.

Picking a couple–Respectful Insolence has Why am I not surprised? It looks as though Andrew Wakefield probably falsified his data.

Bad Astronomy has Did the founder of the antivax movement fake autism-vaccine link?

It is worth noting that Dr. Wakefield published a statement of his own as In his desperation, Deer gets it wrong once again.

Dr. Wakefield is in a strange position, since the GMC hearings are still ongoing to determine whether his methods warrant disciplinary action. That said, Dr. Wakefield’s statement responds to a letter that Brian Deer sent prior to publication. It is unclear if this response was sent to Mr. Deer before publication, or if any response was made pre-publication. That said, I wonder why Dr. Wakefield didn’t respond to the specific information from the children’s records which contradicts the story presented in Dr. Wakefield’s papers. What Dr. Wakefield does do is offload responsibility to others–other authors and the parents.

The reporting of the children in the Lancet paper is an accurate account of the clinical histories as reported to Professor Walker-Smith and his clinical colleagues.

One comment that has been made to a blog is worth paraphrasing here. Dr. Wakefield comments in his response:

Finally, I did not “create” a scare but rather, I responded to a scare that parents brought to my attention.

Perhaps Dr. Wakefield didn’t “create” a scare. But, what he did was throw gasoline on a lit match. To stand back and claim no responsibility for burning down the house is quite disingenuous.

Paul Offit in the New York Times

13 Jan

Paul Offit is in the NYT today talking about his book:

A new book defending vaccines, written by a doctor infuriated at the claim that they cause autism, is galvanizing a backlash against the antivaccine movement in the United States.

which is true. For the first time in the nearly six years I’ve been blogging about autism and vaccines, things are happening beyond the stale, jargon filled denouncements appended to the end of news pieces about autism and vaccines. Doctors in the US and UK are wising up to the very real health dangers – and dangers posed to autism research – posed by the antivaccine/autism lobby. I’ve seen health experts on TV over here, read many interviews with actual doctors and scientists in both countries and am aware of plans to carry the message much, much further and harder than ever before. Its about time.

Offit again mentions the threats he’s received and Dr. Gregory A. Poland mentions threats his kids, something that Offit has also received, as have I and several other autism parents who don’t believe vaccines cause autism. Some scoff at that according to the NYT article. I would suggest that that displays a level of arrogance and head-burying that is unhealthy.

However, I think some of the scientists involved are naive or simply don’t understand the level of blind fanaticism they are dealing with:

If the surgeon general or the secretary of health or the head of the C.D.C. would come out and make a really strong statement on this, I think the whole thing would go away,” said Dr. Peter J. Hotez, president of the Sabin Vaccine Institute, who has a severely autistic daughter…

With respect to Dr Hotez, thats living in a fantasy world. What would happen is that certain factions would simply do what they try to do to Dr Offit, Dr Poland, Dr Shattuck, him (if he knew it), me, Kathleen, Kristina, Amanda, Orac, Joseph, Do’C (the list goes ever on) and now Josh and Ben from Change.org – they would suggest that the Surgeon General had become a pharma shill. They would wheel out the same tired old statements from ex-heads of NIH etc, people who have no relevance and no ideas and the whole thing would just go around and around.

To be 100% honest, the best thing to do with these people is buy them an island somewhere, transport them to it and let them live out their lives totally organically and naturally. Two birds, one stone.

But seriously, you will never, ever get through to these people. They cannot be reasoned with. To quote Lord Byron:

Those who will not reason are bigots, those who cannot are fools, and those who dare not are slaves.

Leading members of Generation Rescue are quoted in the piece:

We have hundreds of fully recovered children. I’m very frustrated that Dr. Offit, who’s never treated an autistic child, is spending his time trying to refute the reality of biomedical recovery.

He…condemned threats generally, saying he had received some himself. “No one should ever do that to another human being,” he said.

This is a constant source of puzzlement to me as I keep hearing about these ‘hundreds of full recovered children’ (didn’t it used to be thousands?) and yet a search of PubMed for these case studies show nothing at all.

So where are they? Much like David Kirby with his claim HHS have said vaccines caused Hannah Poling’s autism when they have not, this is yet another soundbite with no substance at all to back it up. How long can one keep making such wild claims without a shred of evidence to support them? How long before one’s own conscience starts to trouble you?

Many doctors now argue that reporters should treat the antivaccine lobby with the same indifference they do Holocaust deniers, AIDS deniers and those claiming to have proof that NASA faked the Moon landings.

I agree. But whilst we live in a society that thinks Jenny McCarthy is capable of offering medical advice and the media love celebs more than people it ain’t going to happen. Medical science needs to carry on fighting and fighting harder.

Age of Autism claim 'hundreds of case reports' of recovered children

16 Dec

A post on the Age of Autism about an interview with the New York Times describes how the interviewee believes that:

….none of our health authorities have any explanation of cause or cure [of autism], we have a whole community of doctors and parents who are actually recovering children. And, without ever treating an autistic child, interviewing a DAN! doctor who treats them, or exploring the several hundred case reports of complete recovery and thousands of stories of improvement…

I was fascinated by this. I have not ever seen one published case report of a child recovered by a DAN! doctor in a respected medial journal. In fact, its a common refrain of mine that these things do not in fact exist at all. And here the author of this post is claiming that there are ‘several hundred case reports of complete recovery’. I thought maybe there’d been an upsurge in PubMed so I went to have a look.

I found one case study that referenced DAN! methods: The recovery of a child with autism spectrum disorder through biomedical interventions. This study (for which no abstract is available) is published in ‘Alternative therapies in health and medicine‘ which claims to be a peer reviewed journal and who’s subject matter includes such medical breakthroughs as Reiki, prayer and reflexology. How this magazine got listed in PubMed I have no idea.

Anyway, suffice it to say that it is totally unsurprising that this study got published in such a publication (Eigenfactor here – compare to New England Journal of Medicine for an idea of how good it is).

So, here’s one very dodgy ‘study’. Where are the other several hundred case reports?

It is also well established that those who use Alt-Med and go on to claim recovery also use mainstream therapies (e.g Jenny McCarthy’s child who was on GFCF, some other stuff….and one-to-one speech therapy). In a 2006 study ‘Internet survey of treatments used by parents of children with autism‘, it was established that:

The mean number of current treatments being used by parents was seven….

I haven’t read the ‘study’ in the Altie journal but the experience with Jenny McCarthy’s child, and plenty of others I have read online indicates that this is true for most parents who claim to be recovering their kids biomedically. As such, you have to give weight to the treatments that are established to have some benefit already. And lets also look at the results of the recent Helt study which reported that a non vaccine related, non-biomed set of kids had somewhere between 3 and 25% recovery. This indicates that sometimes, kids just recover. For reasons we are not really aware of yet.

So I am left puzzled as to why the Age of Autism claim there are several hundreds of case reports. I am puzzled as to how they know it was the biomed intervention which precipitated the alleged recovery and I am puzzled as to how they link _any_ sort of treatment to recovery. All in all, it seems like a set of claims that are not reality based are being made. But maybe I’m wrong – if so, please – anyone from AoA – provide a link to the peer reviewed journal published several hundred of case reports that you claim exist.

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.

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.’

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.

Jenny McCarthy and the Holy War

2 Nov

Now I know some people don’t like this blog going after Jenny McCarthy. I understand why (giving air time to air heads seems silly) but I really do believe its important that what this woman says in the name of the autism community is checked, double checked and exposed to the cold light of day.

So – continuing the theme of what Ms McCarthy says at one point in time is not the same as what she says at another I want to present the results of my own Google Phd research.

Lets go back to September 2007 where Evan is recovered:

McCarthy claims that a radical diet, 100% free of gluten and casein, facilitated her son Evan’s recovery from autism….

However, also in September 2007, Evan’s ‘therapist’ describes him as in recovery:

I think Evan is in recovery,” says Sarah Clifford Scheflen, a speech-language pathologist at UCLA and Evan’s therapist since 2005. With autism, a neurological disorder that impairs ability to communicate and relate to others, “early intervention is huge,” Scheflen says, “and Evan received that.”

Fast forward to April 2008 and McCarthy describes Evan again as recovered.

We believe what helped Evan recover was…..

But then two months later Jenny says they will be chelating Evan:

A lot of people are scared to chelate, which is the process of pulling metals out of the body, but it has triggered many recoveries. … Everyone has their own recipe to recovery, but your child might need chelation to get there. With a DAN doctor, I mean these guys are so good, they will help, you know, make sure your child is safe, your child has the minerals it needs to do it. … I’m, of course, scared to do it with Evan, but I plan on doing it this summer because Evan still suffers from seizures……


Four months after that
, under the headline ‘Jenny McCarthy: My Son No Longer Has Autism ‘ Jenny says:

Jenny McCarthy says she helped her son, Evan, recover from autism.??…

However, four days after that Evan McCarthy’s paediatrician Dr Jay Gordon described Evan thusly:

Jenny McCarthy’s son is doing better than he was before she started intervention. He is recovering from autism. That’s an ambiguous phrase but it’s the best I can do.

Its a bizarre mish-mash of cured/not cured recovered/recovering – where does the truth lie? Does it matter?

Yes, to me it does. This woman is selling books off the back of the autism community. Part of her marketing is that we all love her and are rah-rahing for her. Well I’m not. I’m not sure she’s lying but there is dishonesty of some kind going on here.

And lets go back to the story in People in September 2007. The first box out says:

“I don’t want to come across like a preacher,” says McCarthy….

And compare that with the story in USMagazine a year and a month later:

I made a deal with God,” she explains. “I said, ‘You fix my boy, you show me the way and I’ll teach the world how I did it.

Something has happened to Jenny McCarthy between September 2007 and October 2008. Something that has taken her from not wanting to come across like a preacher to making a deal with god to show her the way and she’ll teach the world how. Make no mistake – that is explicit religious terminology. She wants the world to think of her as someone who ‘knows the way’ and she can ‘show them’ that way. The comparisons with Christianity are both undeniable and frankly – disturbing.

Its obvious from hearing that thoughts of Evan’s paediatrician that Evan is not recovered or cured and yet Jenny McCarthy wants to ‘show us the way’? It sounds more to me that Ms McCarthy is becoming dangerously close to religious fervour.

Story Time With Darwin

24 Oct

When Autism’s False Prophets hit the shelves–heck even before–there was a lot of buzz in the online community. Lot’s of reviews were posted on blogs. There seemed to be a strong correlation between people who actually read the book and people who favorably reviewed the book. AFP was chosen for the Science Blogs Book Club.

There have been a lot of approaches to discussing Autism’s False Prophets online, but I don’t think I would have ever predicted this:

Darwin-AFP Introduction

Yep, someone (not just someone, and autistic adult) reading from Autism’s False Prophets.

I saw that video and thought, “AFP isn’t a really long book, but there’s no way that this guy can cover much of the book.”

I underestimated the will and stamina of Darwin. He has 59 videos up. He’s at least to chapter 8.

Here’s a “commercial” for the YouTube series. You gotta click on this one. It’s short, and made me laugh out loud.

Darwin-AFP commercial

Note: I’m having a little trouble embedding the YouTube videos. I hope to figure that out soon.