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Age of Autism's reporter of the year 2008

3 Jan

Age of Autism’s reporter of the year for 2008, David Kirby, made something of an error yesterday. On the Huffington Post, the following headline appeared:

Obama Transition Team: “Recovery from autism is neither possible nor desirable”

You see, David was alluding to the fact that Kristina Chew and Dora Raymaker head been appointed by Change.org to be their autism bloggers. Trouble is that somehow he got the idea in his head that Change.org was actually Change.gov’s website.

Change.org is actually a social action networking site run by people who took the time to sift through the applications they received and interview those they shortlisted. They were very, very knowledgeable about the split in the autism community and decided that rather than rely on the sort of scare-mongering and factless blogging that permeates the vaxosphere they would get their facts about autism from a professor with an autistic child and (gasp!) an autistic person themselves.

Lets be clear about the size of David’s error here (in case the post is now gone I have a screenie for you to grab) davidkirbyoopsie

David has pretty much just accused the Obama transition team – without doing the most basic of fact checking – of wanting to leave autistic children to ‘a nightmare without end’.

A lot of David’s post is factless twaddle and made me quite angry to read. He (like everyone else on his side of the autism divide) states there are thousands of recovered autistic kids? Where? Where are the case studies? Certainly not in PubMed.

David claims Kristina doesn’t speak for the ‘countless thousands’ of parents he knows who think vaccines injured their kids. So? AoA don’t speak for the ‘countless thousands’ if not millions of parents that exist all over the world who don’t think vaccines cause their child’s autism.

I have a very strong suspicion in fact that David didn’t actually visit the website of Change.org. If he had he would’ve seen instantly just by the design of the site that its nothing to do with the transition team. I think some AoA bigwig forwarded on Kristina’s posts and ‘asked’ David to blog about them pointing out all the key ranty elements David mentions in a style that is not usually his.

Perhaps the most damage will be done by the paragraphs:

The President Elect has an old, dear friend going all the way back to Chicago, with a young son on the autism spectrum. That friend will soon be a Senior White House Official.

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

I’m afraid David, that by placing words in the President elects mouth – and utterly wrong words at that – you have demonstrated a certain hubris.

Not only are you wrong that Obama has shown any inclination to say that, Kristina Chew has shown no inclination to say that either. Unlike you, she is parent to an autistic child and you have just said that she feels it is not desirable to help her son. I hope you have the grace to apologise to her publicly as these words are far from true. Maybe you should try spending some time away from the anti-vaxxers and spending some time with the _actual_ autism community – a community who work damned hard with their children. They just don’t subject them to meaningless, expensive and dangerous experimentation.

Update
Age of Autism are obviously not HuffPo readers – they just posted their own copy of the story. And then just as quickly deleted it, but not quickly enough to beat the mighty G. aoaasses click for bigger.

Two new blogs you need to read this new year

31 Dec

You may recall, Dear Reader, that earlier this year Change.org made a big splash when they advertised for an autism blogger for their increasingly popular social action network website. From blogs all over the autism blogosphere, readers and potential authors were urged to apply, apply, apply.

Of course it goes without saying that this was in itself a political act – I doubt very much if Change.org were quite prepared for the utter deluge of applications that hit them. I have it on good authority that applications ran into the thousands and has been by far the biggest launch Change.org have held.

Age of Autism, with its usual inherent crassness, not only informed their readers of this but also posted the private home phone number of one of the owners of Change.org. As ever, the people on that side of the fence show a startling lack of good social skills for a group that believe genes play a secondary role to vaccines.

Did I apply? Yep. Did I get it? Nope. Am I happy about that? I actually am. I would’ve loved to have carried a neurodiversity message into the heart of the largest growing social action network on the web today but although I made it to the final round, I didn’t make the final hurdle. C’est la vie.

So why am I happy? Because in a burst of what can only be described as genius planning from Change.org they have decided to appoint not one, but _two_ autism bloggers.

So what? I hear you say. Well, so, the first blogger is the truly amazing Kristina Chew. Someone whos blog will be required reading. Someone who is quite firmly on the side of autistic people.

But the absolute best thing is the second blogger. Change.org decided that they would have an autism blogger who was autistic. They settled for Dora Raymaker – an ASAN Director alongside Ari Ne’eman.

This makes Change.org the very first non-autie run political (with a small p) organisation in the US to appoint an autistic person to talk about autism. Think about that. Change.org beat ASA, Autism Speaks etc to appoint an autistic person to express an autistic viewpoint.

I am very excited about these two new autism blogs. I am thrilled that these two people beat off the competition (including me) to take a pro-autistic advocacy message to the heart of this website and this new way of campaigning. Well done Kristina, well done Dora – well done Change.org

Truly, a happy new year for autism advocacy.

NB: Official launch is not until 7th Jan so the blog will be in a state of flux for awhile. Don’t go expecting the finish product. But DO GO and join! Its expected to fully OPERATIONAL however by Jan 2nd.

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.

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.

Well Harold, since you asked…

12 Dec

Over at his blog, Harold is fretting about the possibility of Autism Twitter Day really being a stealth-Neurodiversity attack:

What exactly does “positive” autism awareness mean? Is that concept consistent with “realistic” autism awareness?

Well, yeah. Look Harold, sooner or later you’re going to have to bite the bullet and accept the fact that a sizeable percentage of the autism community are interested in pursuing positive autism awareness. This means reflecting _one_ reality of autism – that there are positives to autism and they should be celebrated and that awareness of these positives is something that should be raised. This is reality. _One_ reality.

Another reality is that autism has its downsides too – we all live it, we all know that. Now, if Harold (or whomever) wants to do his own “negative” autism awareness day then – good luck to him. Personally, I’ve had enough of that but I recognise that it – just like the positive side of autism – is a reality. Harold goes on:

Still I can’t help but wonder when I see the adjective “positive” used to describe autism awareness whether it is an attempt to censor the discussion, to promote an unrealistic, feel good picture of autism

Yeah, damn that evil censoring positivity. Sometimes autism (take a deep breath Harold) _does_ feel good. It feels good to be involved in my childs life on many occasions. And as for censorship Harold, I’ve lost count of the number of times I’ve tried to comment on your blog only to note no comment has ever made it past your censorship. You, by contrast, continue to remain free to comment here.

Here’s the thing Harold. You don’t want there to be _any_ discussion of positivity in my opinion. You refuse to believe such a thing exists. You see autism = bad. End of story. The terrible truth Harold is that you are the censor. Anything that doesn’t contain a hefty dollop of misery isn’t ‘reality’ for you. Well, cool, whatever you like. However, please don’t try and dictate to everyone else – who clearly see that autism has many sides and many realities – what we should and should not talk about.

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.

Bad Science Part 2: Blinding

26 Nov

Continuing my ‘homage’ to Ben Goldacre’s excellent new book ‘Bad Science‘, this time we discuss Ben’s explanation of the scientific concept of Blinding.

One important feature of a good trial is that neither the experimenters nor the patients know if they got the [thing we want to test] or the simple placebo sugar pill, because we want to be sure that any difference we measure is the result of the difference between the pills and not of people expectations or biases.

Page 45. Inserts mine.

The stakes are fairly important. Ben tells how the biggest figures in evidence based medicine got together and did a review of blinding in all kinds of trials of medial drugs. The trials that used bad blinding techniques (or none at I guess) exaggerated the benefits of treatments by 17%.

Frequently I hear complaints from people who don’t care for the scientific method or who believe it is part of a massive conspiracy to cover up ‘the truth’ that things like blinding, randomisation, placebo effects, using controls and meta-analysis are essentially silly nitpicking to rubbish ‘the truth’. Clearly, when there is a 17% exaggeration, this cannot be accurate.

When doctors and scientists say that a study was methodologically flawed and unreliable, it’s not because they’re being mean, or trying to maintain the ‘hegemony’ or to keep the backhanders coming from the pharmaceutical industry: it’s because the study was poorly performed – it costs nothing to blind properly – and simply wasn’t a fair test.

Page 47.

Read more about Blinding techniques at Wikipedia.

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.’