Archive by Author

David Kirby didn't look before he leapt

7 Dec

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

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

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

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

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

Anyway.

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

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

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

to which David asks:

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

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

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

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

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

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

Can Children with Autism Recover? If So, How?

2 Dec

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

Here’s the abstract:

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

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

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

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

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

Second, ‘current functioning’:

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

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

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

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

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

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

Something else that seems to play no part:

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

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

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

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

There are no positives to autism

1 Dec

Well you know – except when there are:

As Charlene Sawyer, a bespectacled young woman in jeans and pink Nikes, sings “Danny Boy,” they stand still. They don’t sip their beers or talk among themselves or puff on their cigarettes. They just listen.

Sawyer sings the old Irish ballad like they’ve never heard it before, delivering it in a spine-tingling, operatic style, her specialty.

When she finishes, the crowd fills the bar with applause. Sawyer grins and scoops up her orange notebook of sheet music. She knows she nailed it.

What most of the patrons in the bar don’t know is that Sawyer is autistic.

The Centre for Disabilities this young lady attends describes her as ‘an exceptional talent’. But what is also clear – as the article mentions is that her autism plays more than a passing role in her singing:

Because of her disability, Sawyer will probably never sing in a great performance hall. But if she didn’t have autism, she likely wouldn’t have cultivated her voice to such a degree in the first place. Many high-functioning autistics such as herself nurse obsessions, and Sawyer’s obsession is music.

I’m not so sure this young lady might not ever sing in a ‘great performance hall’. She might have trouble and need help, but I bet she could. What is beyond doubt is the fact that her autism’s insistence of attention to detail and perseverance is what made her voice the beautiful thing it is now.

I’d say from reading the rest of the article that she might have a thing or two to learn about other autistic people but what is beyond doubt that autism has helped make her who she is. Without autism, her gift for singing would’ve been lessened or not be actualised at all.

There are people in this life who will tell you everything about autism is bad, that it contains no positives. Do not trust these people because – as the story Charlene Sawyer shows – they are wrong. Life is never so black and white.

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.

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.’

A greater acceptance

24 Nov

“I don’t subscribe to the notion of the ‘perfect human being’ and found the idea of selecting one child in preference to another abhorrent.”

A survey by the Down’s Syndrome Association reports on how the parents of Down’s kids have elected to parent rather than abort their children in increasing numbers.

Following the introduction of screening for Down’s syndrome in 1989, the number of babies born with the condition steadily fell from 717 to just 594 at the start of this decade.

Since 2000 the birth rate has increased, reaching 749 births of children with Down’s syndrome by 2006, the latest year for which figures are available.

The increase is down to knowing somebody with Down’s, religious or anti-abortion beliefs feeling life had improved for people with Down’s. I ain’t going to get into a pro-life debate (I’m not, I’m pro-choice, end of.) but I am *immensely* encouraged to see that some parents can act rationally and with thoughts for their children first and foremost.

Initial results show that 25 per cent said they already knew people with Down’s syndrome or other disabilities and that had influenced their decision to continue with the pregnancy. Thirty-five per cent said they felt life and society had improved for people with Down’s syndrome. Surprisingly almost half of those questioned said they did not think they would have a child with Down’s syndrome and that’s why they continued.

Most respondents said they felt supported by their family and friends.

One respondent said: “I don’t subscribe to the notion of the ‘perfect human being’ and found the idea of selecting one child in preference to another abhorrent.”

Another said: “I already felt a strong sense of responsibility for my unborn child and knew that I would love it and want it regardless of any additional needs it might have. I knew I could count on friends and family for support.”

This would seem to be the winning mentality of the ethos espoused by the DSA, their aims being:

We provide information and support for people with Down’s syndrome, their families and carers, and the professionals who work with them.
We strive to improve knowledge of the condition.
We champion the rights of people with Down’s syndrome.

We can only hope that one day, the same sort of autism-friendly results come about. Certainly it won’t be any time soon if those who represent autism as a soulless condition in need of nothing but cure continue to prattle on in factless books.

More power to you all DS community.

Bad Science Part 1: Randomisation

22 Nov

I’ve finally finished ‘Bad Science’ by Ben Goldacre and I intend to give this a bit more than just a review. I intend to take certain bits from it and blog them in order to explain why the scientific concepts you hear expounded about on this blog and others are important – or more accurately, why the lack of them is important. But before I do, here’s a (now traditional) short review of Bad Science by Ben Goldacre: Holy shit this book is good, go buy it (Amazon UK, US, unavailable in Canada).

It is _not_ an autism book, although autism is discussed via the chapter on MMR. However, it will give those who wish to discuss science with some degree of confidence a primer in the basics. First thing I want to talk about is the concept of Randomisation:

Here’s Ben discussing the concept in relation to a Homeopathy study:

Randomisation is another basic concept in clinical trials. We randomly assign patients to the placebo sugar pill group or the homeopathy sugar pill group, because otherwise there is a risk that the doctor or homeopath – consciously or unconsciously – will put patients who they think might do well into the homeopathy group and the no-hopers into the placebo group, thus rigging the results.

(page 48)

The issue with randomisation is not that it is never done – Ben mentions that it is rare to find a study so bad that randomisation is not done _at all_ – but that it is done poorly. Poor examples of ‘randomisation’ (e.g. methods that aren’t really random) include: selecting every other patient to a group depending on which order they sign up to the study i.e. Patient 1 goes into the control group, patient 2 into the non-control group, patient 3 into the control group etc etc, last digit of date of birth, date seen in clinic etc. Ben says that some studies claim to randomise patients by tossing a coin!

All these are open to conscious or unconscious manipulation by the researcher signing people up and are thus not trustworthy.

Ben describes the state of the art randomisation method as being:

1) Sign the patient up to the study
2) Make them call a special phone number
3) Someone at the other end answers the call
4) This person uses a computerised randomisation programme.

This is good because the actual research team are pretty much removed from the physical process of randomisation.

Ben goes on to ask: does randomisation matter?

Turns out it really does:

….people have studied the effect of randomisation in large numbers of trial and found that the ones with dodgy methods of randomisation overestimate treatments effects by 41%.

(Page 50)

Worse that that are the (many it seems) studies where the paper doesn’t tell you _what_ methods of randomisation was used, usually a clear red flag that the study was poorly designed and executed.

…trials with unclear methods of randomisation overstate treatment effects by 30%…..

(Page 50)

This is fascinating stuff from Ben and I promise there’s more to come. I hope this mini-series of articles from Ben’s excellent book will give you the impetus to keep reading when discussions evolve into exchanges of a technical nature. Of course, it is no substitute for buying the book itself, something I urge you to do post haste.

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