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The Quacks behind the Warrior Moms

13 Oct

I accept Dr Carpenter’s opinion that there is no evidence that any of these treatments were individually beneficial for M and that collectively they were intrusive and contrary to his best interests.  M’s life was increasingly dominated by the programme of treatment to the exclusion of other activities.  I find that E has implemented a programme of diet, supplements and treatments and therapies indiscriminately, with no analysis as to whether they are for M’s benefit, and on a scale that has been oppressive and contrary to his interests.  She has exercised total control of this aspect of M’s life.’

Mr Honourable Justice Baker, In the Court of Protection, Judgment, In the matter of the Mental Capacity Act 2005 and in the matter of M, 11 August 2014

Brian Deer has once again done a service to the autism community, by putting in the public domain the judgment of Mr Justice Baker in the case arising from a dispute between a local authority and the mother (E) and father (A) of a young man (M) with autism.

http://briandeer.com/solved/mother-lied-protection-news.htm

Deer’s report, published in the Sunday Times on 12 October, focuses on the judge’s scathing judgment on E, a prominent supporter of the claim by the discredited Royal Free researcher Andrew Wakefield of a link between the MMR vaccine and autism. Mr Justice Baker concluded that E had fabricated evidence of an adverse reaction to MMR in her son, invented a range of associated diagnoses, subjected her son to unnecessary tests and treatments, neglected a dental abscess and indulged in fantasy conspiracy theories.

This Court of Protection case offered a rare opportunity to ventilate in public some of the controversies that have raged in the world of autism over the past decade. In the USA, the Omnibus Autism proceedings in 2008-9 provided a public forum in which claims regarding vaccine-autism links and associated alternative treatments were exposed as scientifically baseless and clinically irresponsible.

http://www.spiked-online.com/newsite/article/6283#.VDqLgWd0yUk

Though Mr Justice Baker did not address the MMR link or alternative treatments in general, his 92 page report provides a devastating indictment of the role of a range of therapists in relation to M, some of whom appeared as witnesses. In addition to exclusion diets and supplements, M received homeopathy, cranial osteopathy, reflexology, naturopathy, light and sound therapy, auditory integration training and hyperbaric oxygen therapy. It is clear that E’s descent into irrationality and paranoia was supported and encouraged by a number of dubious authorities and therapists, with damaging consequences for her son and her family.

Three therapists gave evidence in support of E’s treatment of her son. Shelley Birkett-Eyles, an occupational therapist working in a private clinic, was accepted by Mr Justice Baker as a ‘responsible practitioner’, though he noted that her reliability was challenged by Dr Peter Carpenter, a consultant psychiatrist with a special interest in learning disability, the expert witness called by the local authority.

Dr Peter Julu describes himself as ‘autonomic neurophysiologist’ (based at the private Breakspear Clinic), though Mr Justice Baker questioned whether this was a legitimate speciality and noted that his diagnosis of ‘neurodevelopmental dysautonomia’ was disputed by Dr Carpenter, who also challenged the reliability of his assessments and treatments, particularly his recommendation of hyperbaric oxygen therapy.

Ms Juliet Hayward, a nutritional therapist, was censured for giving ‘advice well beyond her expertise’, in endorsing a diagnosis of Lyme Disease and in prescribing a dietary protocol without taking an adequate medical history. Mr Justice Baker concluded that he ‘was left with a profound anxiety about Ms Haywood’s influence on E and her role in the treatment that M has received.’

Mr Justice Baker was particularly concerned that none of these three had received training in issues of ‘mental capacity’ as codified in the 2005 Mental Capacity Act. He observed that ‘it was clear from their evidence that none of them had given proper consideration to the question whether M had capacity to consent to their assessments or the treatment they were prescribing’.

In addition to these therapists, E called as expert witnesses two veterans of the Wakefield anti-MMR campaign: Dr Ken Aitken, a clinical psychologist formerly associated with the (now defunct) Autism Treatment Trust providing alternative treatments in Edinburgh; and Mr Paul Shattock, a retired pharmacy lecturer from Sunderland, a long-standing promoter of exclusion diets and unorthodox biomedical therapies.

http://www.spiked-online.com/newsite/article/5992#.VDqNsWd0yUk

By contrast with other expert witnesses (including Dr Peter Carpenter, Dr Alison Beck, Professor Robin Williamson, Dr Gwyn Adshead, Mr Keith McKinstrie), whom Mr Justice  Baker found to be ‘wholly reliable and professional’, he expressed considerable reservations about Aitken and Shattock:

‘I was concerned at times as to their qualifications to opine on some of the matters about which they gave evidence.’

In his conclusion, Mr Justice Baker categorically rejected the approach advocated by Aitken and Shattock in relation to M:

‘I stress, again, that I am not making any definitive findings on the efficacy of alternative treatments generally.  That is not the subject of these proceedings, which are about M.  I do, however, find that: (1) there is no reliable evidence that the alternative treatments given to M have had any positive impact on people with autism generally or M in particular and (2) the approach to prescribing alternative treatments to and assessing the impact of such treatments on people with autism in general and M in particular has lacked the rigor and responsibility usually associated with conventional medicine.’

Mr Justice Baker repudiated ‘the fallacy’ of E’s belief that there are two parallel approaches to the diagnosis and treatment of autism, each of which is equally valid:

‘The evidence in this hearing has demonstrated clearly that there is one approach – the clinical approach advocated by Dr Carpenter – that is methodical, rigorous and valid, and other approaches advocated by a number of other practitioners, for which there is no evidence of any positive impact and which (in this case at least) have been followed with insufficient rigor.  Whilst each treatment may be harmless, they may, if imposed collectively and indiscriminately, be unduly restrictive and contrary to the patient’s interests.  These disadvantages are compounded when, as in several instances in this case, insufficient consideration is given by the practitioners to the question of whether a mentally-incapacitated patient has consented to or wishes to have the treatment.’

Given his characterisation of E’s performance in court as controlling, manipulative, duplicitous and obstructive it was perhaps not surprising that Mr Justice Baker expressed some sympathy for the long-suffering family GP, Dr W. This ‘older-style family GP’ had been ‘tolerant and sympathetic’ and had maintained a good relationship with the family ‘until he went into the witness box’, when it became clear to E and her husband that, though Dr W had been attentive to the family needs and had responded to her requests to arrange investigations that he did not consider clinically indicated, he did not endorse her wilder theories and diagnoses. Though the parents later expressed ‘disillusionment’ with Dr W, Mr Justice Baker found his evidence ‘responsible, truthful and humane’.

Michael Fitzpatrick

13 October 2014

Michael Fitzpatrick has an autistic son close in age to M; he is a doctor, former GP and the author of MMR and Autism: What Parents Need to Know (2004) and Defeating Autism: A Damaging Delusion (2009)

Studies ‘supporting’ Andrew Wakefield

7 May

It is 15 years since Andrew Wakefield first hypothesised a link between the MMR vaccine and autism in children, mediated by an inflammatory bowel condition (subsequently labelled ‘autistic entercolitis’). Over this period Dr Wakefield and his supporters have cited a range of studies which are claimed to ‘verify’, ‘replicate’ or ‘support’ his MMR-autism theory. Here is the most recent list:

‘Here is a list of 28 studies from around the world that support Dr. Wakefield’s research:
1.The Journal of Pediatrics November 1999; 135(5):559-63
2.The Journal of Pediatrics 2000; 138(3): 366-372
3.Journal of Clinical Immunology November 2003; 23(6): 504-517
4.Journal of Neuroimmunology 2005
5.Brain, Behavior and Immunity 1993; 7: 97-103
6.Pediatric Neurology 2003; 28(4): 1-3
7.Neuropsychobiology 2005; 51:77-85
8.The Journal of Pediatrics May 2005;146(5):605-10
9.Autism Insights 2009; 1: 1-11
10.Canadian Journal of Gastroenterology February 2009; 23(2): 95-98
11.Annals of Clinical Psychiatry 2009:21(3): 148-161
12.Journal of Child Neurology June 29, 2009; 000:1-6
13.Journal of Autism and Developmental Disorders March 2009;39(3):405-13
14.Medical Hypotheses August 1998;51:133-144.
15.Journal of Child Neurology July 2000; ;15(7):429-35
16.Lancet. 1972;2:883–884.
17.Journal of Autism and Childhood Schizophrenia January-March 1971;1:48-62
18.Journal of Pediatrics March 2001;138:366-372.
19.Molecular Psychiatry 2002;7:375-382.
20.American Journal of Gastroenterolgy April 2004;598-605.
21.Journal of Clinical Immunology November 2003;23:504-517.
22.Neuroimmunology April 2006;173(1-2):126-34.
23.Prog. Neuropsychopharmacol Biol. Psychiatry December 30 2006;30:1472-1477.
24.Clinical Infectious Diseases September 1 2002;35(Suppl 1):S6-S16
25.Applied and Environmental Microbiology, 2004;70(11):6459-6465
26.Journal of Medical Microbiology October 2005;54:987-991
27.Archivosvenezolanos de puericultura y pediatría 2006; Vol 69 (1): 19-25.
28.Gastroenterology. 2005:128 (Suppl 2);Abstract-303

http://healthimpactnews.com/2013/new-published-study-verifies-andrew-wakefields-research-on-autism-again/

Which of these studies supports a link between MMR and autism? None of them. Which studies support a link between MMR and inflammatory bowel disease? None. In fact, none of these studies focuses on MMR: the term ‘MMR’ is not included in any of the titles.

One study (no 6) by Vijendra Singh, published in 2003, claims a link between measles virus and autism. According to virologists in London, Singh’s methodology was suspect and the evidence for the specific ‘anti-MMR’ antibody he identified was ‘not credible’(see Michael Fitzpatrick, MMR and Autism: What Parents Need To Know, p90).

Several studies claim to show an association between ‘autistic enterocolitis’ and autism. Of these (nos2, 3, 4, 9, 18, 19, 28) all but two feature Dr Wakefield as a co-author. Study no 9 is the work of Wakefield collaborators Arthur Krigsman and Carol Stott, published in a journal whose editors include Wakefield and Stott. Study no 28 is the work of Wakefield’s former Royal Free colleague Federico Balzola. The study by Dr Lenny Gonzalez, (no 27) a former collaborator with Wakefield at his Thoughtful House clinic in Texas, published in Venezuela, reports the extraordinary findings of autistic enterocolitis in 100% of 45 children with autism, and in 66.66% of 57 ‘developmentally normal’ controls. Apart from Wakefield and his former or current colleagues, no other researchers in the world have confirmed the existence of ‘autistic enterocolitis’ in children with autism.

Some studies suggest the presence of gastrointestinal disorders other than ‘enterocolitis’ in association with autism. These include upper gastrointestinal conditions, such as gastritis and oesophagitis (no 1, Horvath;no 10, Galiatsatos; no 20, Torrente); coeliac disease or malabsorption (no 12, Genuis;no 16, Walker-Smith;no 17, Goodwin); microbial factors other than measles (nos14, 15, 24, 25 – the Finegold, Bolte, Sandler team; and no 26 –Parracho and colleagues at Reading). Most of these studies feature small numbers of cases and two (nos 16,17) were published more than 40 years ago.In study no 10, Polymnia Galiatsatos and colleagues in Montreal, Canada report the cases of two young adults, one with colonic inflammation, the other with gastritis. Nikolov and colleagues at Yale(no 13) simply report on ‘gastrointestinal symptoms’ in association with autism.

Other studies suggest immune or autoimmune dysfunction in association with autism: Jyonuchi (nos7,8) and Singh (nos5,11). One study (no 23, Shinohe) focuses on abnormal glutamate metabolism in adults with autistic spectrum disorders. These studies do nothing to advance the vaccine-autism hypothesis.

Given that supporters of Dr Wakefield often claim that his work has been ‘independently’ replicated, it is worth pointing out that Wakefield himself is a co-author on a quarter of the studies listed here (2,3,4, 18,19, 21,22). Others (9, 20, 27,28) feature former Royal Free team members(Ashwood, Torrente, Furlano, Balzola), or subsequent collaborators (Krigsman, Stott, Gonzalez).
Those who, like me, have been following this sad story over the past 15 years, will have noticed that several authorities formerly cited in support of Wakefield’s theory seem to have fallen by the wayside.

In the early days of the MMR controversy, Wakefield often cited the studies of Rosemary Waring and Patricia D’Eufemia in support of his notion of a ‘leaky bowel’. His colleague John Walker-Smith claimed that a letter from Aderbal Sabra published in the Lancet in 1998 (about children with food allergies and ADHD) provided a ‘great public vindication’ of the work of the Royal Free team (see MMR and Autism, p143-4). Tokyo physician Hishashi Kawashima’s claims to have identified measles virus in children with autism were widely promoted – but soon discredited. In Sunderland, retired pharmacy lecturer Paul Shattock, an ardent Wakefield supporter, attracted widespread publicity for his claims to have identified distinctive urinary peptides linking MMR and autism, but his research was never published.

The most widely cited research supposedly supporting Wakefield came from his Dublin collaborator John O’Leary (published in 2002 in separate papers with Uhlmann and Shiels). This was discredited by the evidence of Stephen Bustin in the Omnibus Autism Proceedings in the USA in 2009 (see Stephen A Bustin, Why There Is no Link Between Measles Virus and Autism, DOI: 10.5772/52844).
Another study by Balzola, based on the use of the technique of ‘capsule endoscopy’ in a single (adult) case has also been dropped. It was rapidly followed by a report from another member of his team of ‘acute small bowel perforation secondary to capsule endoscopy’.

Other forgotten Wakefield supporters are the South Carolina immunologist Hugh Fudenberg, and the Florida preacher and vitamin salesman Jeffrey Bradstreet, whose dubious practices were exposed in Brian Deer’s Channel Four documentary in 2004. The father and son team of Mark and David Geier, notorious for their promotion of the ‘Lupron protocol’ of chemical castration and heavy metal chelation as a treatment for autism as well as for their shoddy researches, have also been dropped from the list of supportive researchers.

Another widely quoted ‘study’ supposedly supporting Wakefield was a poster presentation by Stephen Walker (working in collaboration with long-standing Wakefield ally Arthur Krigsman) at the IMFAR meeting in Montreal in 2006.These preliminary, provisional, unconfirmed, non-peer-reviewed findings – of measles virus in bowel biopsy specimens – in an uncontrolled study (which does not mention MMR) were widely reported – and enthusiastically acclaimed by Dr Wakefield. Walker himself disclaimed the interpretation that his work supported any link between measles and autism. This study has never been published.

In conclusion, after 15 years, we are offered 28 studies, none of which supports the MMR-enterocolitis-autism hypothesis. It is not surprising that over this period Wakefield has failed to win the support of a single paediatrician, paediatric gastroenterologist, child psychiatrist or autism specialist in England. Surely it is time to call a halt?


By Michael Fitzpatrick

Mike Fitzpatrick calls Andrew Wakefield’s bluff. Wakefield moves goalposts

17 Apr

As recently noted here at Left Brain/Right Brain, Andrew Wakefield asked to debate someone about the MMR vaccine. In specific, he wrote:

The more light that shone on this subject by way of informed, balanced debate, the better. I am offering to debate any serious challenger on MMR vaccine safety and the role of MMR in autism, live, in public, and televised.

Dr Michael Fitzpatrick wrote in Andrew Wakefield: return of the wicked witch, Wakefield’s MMR-autism nonsense had a baleful influence on public health, but he doesn’t bear sole responsibility for recent measles outbreaks. that he would take Mr. Wakefield’s challenge.

As both a GP and a parent of an autistic son who had followed the destructive consequences of Wakefield’s campaign over the past 15 years, I for one would welcome the opportunity to challenge his baleful influence. Are you ready for a debate now, Andrew Wakefield?

As you might surmise from the wording above, Dr. Fitzpatrick has previously attempted to debate Mr. Wakefield and offered to engage in a full debate:

Wakefield has subsequently restricted his public appearances to conferences of sympathetic parents, anti-vaccination activists and promoters of quack autism therapies. When I asked him a question from the floor at one such conference in Bournemouth in February 2007, he simply refused to answer, deferring to another platform speaker. When I offered to debate with him at a follow-up conference in March 2009, the organisers refused.

How has Mr. Wakefield responded?

What I’m suggesting is a formal scientific debate in public in front of an audience that is televised. And specifically Dr David Salisbury I would like to debate you because I believe you are at the heart of this matter. I believe the decisions taken by you and by your committee, the Joint Committee on Vaccination and Immunisation, lie at the heart of this matter.

Yes, having had his bluff called, Andrew Wakefield moves the goalposts. He won’t take on Mike Fitzpatrick. He won’t take on “any serious challenger”. Only Dr. David Salisbury.

In addition to lacking integrity, Mr. Wakefield now shows that he lacks courage.

Mike Fitzpatrick is a physician. He is an autism parent. He has written two books on autism: MMR and Autism: What Parents Need to Know and Defeating Autism: A Damaging Delusion. Hard to find a more “serious challenger”.

Hundreds of children are suffering from measles in the U.K.. This isn’t the time for empty offers of debate. This isn’t the time for publicity stunts. It’s time to own your mistakes and do what you can to fix the problems you helped create. Do you have that courage, Andrew Wakefield?


By Matt Carey

Reading Age of Autism – All I can handle, I’m no Vladimir Nabokov

13 Nov

I read Dan Olmsted’s latest post on Age of Autism and was reminded I had yet to publish a closing post on my experiences with the book. Here’s a quote from Dan:

It’s doubly disappointing to see traditionally progressive outlets – from Salon to Daily Kos to The Atlantic to National Public Radio and PBS – ignore the evidence presented in our book and so many other places, twist the facts they can’t deny, belittle those who believe otherwise including beleaguered autism parents, and glibly trumpet tired reassurances that the concern over vaccines has been “asked and answered,” that “study after study” has refuted any relation, and that continuing to point out disturbing patterns of evidence to the contrary endangers children and infants.

Quick translation for you: “Waaah, nobody liked our book or thought it was valid. What a bunch of pooh-pooh heads!”

The embarrassing truth for Dan Olmsted and Mark Blaxill is that their book has been still-born. Take a look at the Amazon rankings compiled by Broken Link and its hard to come to any other conclusion. But why has this happened?

First off, the book is badly written. Its not an easy read in the way that Evidence of Harm was. Of course the style is different but Age of Autism is not even a well written poor story.

Secondly, the content is – well – embarrassingly one sided. Whilst B & O claim to be not anti-vaccine, the whole book – particularly part II is rife with anti-vaccine sentiments designed not so much to lead the reader to a conclusion but to batter the reader over the head with the conclusion B & O reached before sitting down to write even.

Thirdly, the content is old hat. There is literally nothing new in the book. For those of us who have followed the the whole story, AoA has nothing _new_ to add to the overall scenario. Whereas Defeating Autism, Autism’s False Prophets and Evidence of Harm all had something _new_ to add to the story, AoA merely dully repeats truthiness from 3 or 4 years ago and couples it with a retelling of historical speculation that simply reiterates what everyone already knew – mercury isn’t so good for you.

So thats that for me reading purgatory. I’m reading something very much better now that I think Sullivan and I will be blogging at length in the new year.

MMR vaccine damaged man

30 Aug

Jackie Fletcher is well known to many – she routinely insists the MMR jab is dangerous despite reams of evidence to the contrary. However, a panel in the UK has found that her son, Robert, was damaged by the MMR vaccine he was administered.

I nearly didn’t blog about this. Why? Well, this blogs predominant focus is autism and Robert did not and does not have autism. The panel in this case found that the MMR caused seizures and mental retardation. Its difficult therefore to get a ‘hook’ into this story. As Mike Fitzpatrick is quoted as saying in the Daily Mail:

It is a very important principle that parents should be compensated in cases of this kind…

and he’s absolutely right. Thats why the Vaccine Damage Payment Unit exists in the UK.

Like any other form of medical procedure, vaccines are not 100% safe. I can’t recall anyone anywhere ever making that claim. What they _are_ however, is very safe indeed. Robert Fletcher was injured and has been compensated. I might even agree with his mum that the amount is ‘derisory’. Robert will need full time care all of his life and £90,000 ($140,000) is nowhere near enough. However, campaigners uninterested in Robert’s day to day needs say that:

Campaigner Polly Tommey, who edits the magazine The Autism File and believes her son Billy is autistic because of MMR, says: ‘This is fantastic news. Now doctors can’t tell me that the MMR is safe.

‘This payout is evidence that it is not safe. It’s interesting that they will look at epilepsy and not autism, and you have to ask why.

‘Is it because the compensation would be billions?’

I very much doubt that any doctor, anywhere has ever told any recipient anywhere that any vaccine is 100% safe. If they did, they were liars.

However, this payment, far from being ‘evidence that it is not safe’ (a bizarre claim) is more like a recognition that the Vaccine Damage Payment system is working as it should. A man was vaccine damaged and was compensated as a result.

As for the claim that ‘they’ will not look at autism, this is simply incorrect. Robert, does not have autism and therefore it would be impossible in this case to look at autism. I would imagine if someone with autism was adjudged to be damaged by their MMR vaccine, Ms Tommey might have a point. As that has not happened, she does not. This kind of fear-mongering by the likes of Tommey is no doubt why the panel made the clear point:

We would stress that this decision is fact-specific and it should not be seen as a precedent for any other case.

In particular, it has no relevance to the issue… as to whether there is a link between the MMR vaccine and autism.

And Fletcher goes on to claim:

Claims for autism are not considered. There are 120 MMR cases waiting to be heard, but none is for autism…

So why should that be? Why is autism apparently ‘excluded’?

Its because the science – both epidemiological and clinical clearly shows that MMR does not cause autism. And that is not the odd paper here and there. We are talking about overwhelming science that shows that the whole autism/MMR connection is simply false and was built up by one man too stupid to admit his clear errors and a mass media keen to build sensation out of this same man’s ego.

Tommey, Fletcher and all others who believe that there’s some kind of conspiracy afoot to block autism from MMR causation cases need to understand the science involved and that unless some new science is forthcoming that establishes MMR as a causative agent in regards to autism then the simple fact of applying for compensation listing the MMR as a cause of their child’s autism is _always_ going to be an immediate strikeout.

Campaigners need to start seeing this event for what it _really_ is – compensation for a vaccine damaged man – and not as what it isn’t – evidence that MMR is inherently unsafe or that theres some mysterious conspiracy to prevent autism from being linked to MMR.

Polly Tommey Woo-ing Gordon Brown

15 Apr

Polly Tommey was due to see Prime Minister Gordon Brown today after a successful billboard campaign, costing a reported £500,000, that invited Gordon Brown to meet with her if he wanted to save £508 million pounds. Ms. Tommey’s son is autistic and she is concerned that there is a terrible fall off in provision and support when you transition from school to adult services. She wants the government to invest in autistic people and her message is that appropriate support will save the government money by lifting autistic people out of benefits and into paid employment. As she says in her press release:

“We want better support, we want politicians to engage with us and we want the acknowledgement and support that our children deserve as fully contributing members of society.”

This is all very admirable. But Dr Michael Fitzpatrick has written An Open Letter to Gordon Brown in which he questions how she expects to achieve her aim.

In her campaign posters, Mrs Tommey, whose 12-year-old son Billy is autistic, offers to save the UK government £500 million a year by helping people with autism to get jobs. But it is not clear from the posters how she thinks this can be achieved. However, The Autism File, the magazine she edits, focuses on two issues: supporting the campaign led by the former Royal Free Hospital researcher Andrew Wakefield against the MMR vaccine and promoting ‘unorthodox biomedical’ treatments for children with autism.

The main point that Dr Fitzpatrick makes is that if her message to the prime minister is the same as the one she promotes in The Autism File she would be well advised to think again. He ends thus:

If she wants better provision of diagnostic, supportive and educational services, she might consider adding her energies to the long-running campaigns of the National Autistic Society and others, currently focused on the Autism Bill.

Ms Tommey’s supporters have been quick to respond. At The Age of Autism, Teri Arranga accuses Dr Fitzpatrick of carrying out an inquisition against the Autism Trust and quotes Trust Chairman. Oliver Jones who responded to Dr Fitzpatrick as follows:

I am both shocked and astounded having read your open letter on the Internet this afternoon. How dare you act in such an ill informed manner about a campaign that I and many others have invested significant time and effort in – when you evidently have no idea about what we are actually focused upon.
I find it remarkable that a professional person can take such an aggressive stance as you have done about The Autism Trust’s campaign without having the decency or following proper protocol by making contact with any of the Trustees and specifically myself to determine the objectives and intent of our forthcoming meetings.

The tone of the article is plain. The Autism Trust is trying to improve services and quality of life for autistic people in the UK and Dr Fitzpatrick is misrepresenting their aims and undermining their efforts because he resents Ms Tommey’s support for biomedical interventions. Having read the Autism Trust’s lengthy press release I agree with Dr Fitzpatrick.

“A Personal Campaign”

The press release is clear that this is Ms Tommey’s “personal campaign.” She wishes to speak to Gordon Brown “on behalf of the thousands of mothers of children with autism in the UK.” It repeats that this is “Her campaign” and highlights her role as Editor-in-Chief of The Autism File.

Credibility

Ms Tommey obviously has a lot of business acumen and is an astute campaigner who is adept at using the media to position herself “as one of the leading figures in autism in the UK.” But, as Dr Fitzpatrick points out, her support for discredited notions about MMR and autism and her promotion of unproven treatments do call her credibility into question. This is underlined by errors in the press release. Ms Tommey claims that:

autism numbers have increased dramatically in the last twenty years from 1 in 10,000 in 1988 to 1 in 100 today.

As long ago as 1966 Lotter established a figure of 4 in 10000 for severely autistic children. When Wing and Gould examined the broader autistic spectrum in 1979 they found 20 in 10000. The present figure of 100 in 10000 includes people without significant cognitive impairments who were only added to the diagnostic criteria in 1994.

But Ms Tommey uses these false figures to argue that we face a fresh challenge as for the first time a significant number of adults enter the system. This is a direct contradiction of the NAS I Exist campaign which has successfully persuaded the government that generations of autistic adults have been ignored. The NAS is continuously engaged in discussions with government ministers and officials to get a commitment to action based on the provisions of the Autism Bill which enjoys unprecedented support amongst MPs.

Centres of Excellence

The Centres of Excellence proposed by the Autism Trust seek to provide residential communities in rural locations that provide a “safe haven” for autistic adults. They hope that such centres will provide support for autistic adults in the community, setting up in business or becoming self employed. But most people live in urban settings so it hard to envisage how they will benefit. And despite Mr Jones’ protests it is clear that the Autism Trust is as committed as Ms Tommey is to nonsense cures and treatments. Each centre of excellence will feature a wellness centre offering all manner of quackery including homeopathy, chelation and hyperbaric oxygen therapy, as well as training centre and a conference centre promoting these “biomedical interventions.”

I think that Mr Jones’ complaints against Dr Fitzpatrick are disingenuous. If anything Dr Fitzpatrick should be taken to task for failing to mention the Autism Trust in his open letter. At a time when service providers are moving away from the model of self contained autism communities in favour of closer integration of services within everyday society the Autism Trust proposes to build a worldwide network of such communities.

They expect local authorities to fund places in their residential homes while they are free to develop profitable spin offs promoting quackery. Or, as they describe it in their financial model:

The capital development and business operating model will depend on the facility mix and local partners – as well as the engagement and support available from local and national government. A mix of charitable status and commercially self-standing models will be explored in each location.

Danger

The greatest danger is not that Ms Tommey and the Autism Trust are going to persuade the government to follow their lead. But by muddying the waters with their campaign they may give the government an excuse to back pedal on existing commitments while they consult with this self appointed autism constituency. The best way forward is to get behind the NAS campaign and keep up the pressure for the provisions of the autism bill to become law.

Michael Fitzpatrick misrepresented by Age of Autism

15 Apr

Hardly news I suppose but on AoA yesterday Michael Fitzpatrick was misrepresented by someone called Teri Arranga.

Starting off by referring to Mike as a ‘backwoods doctor’ – something of an anti-British slur since Mike is a GP in London (I guess London is a backwoods now to AoA?) she soon went on to pretty much rant incoherently, built a few strawmen and finished off by quoting some other guy also ranting incoherently.

According to Arranga

…backwoods doctor Michael Fitzpatrick blasted Polly Tommey, founder of The Autism Trust, for the current campaign that seeks better supports and services for autistic individuals in the UK…

Hardly. Here’s what Mike led with:

In response to her ‘Dear Gordon’ billboard advertising campaign (see below), you have invited the British autism campaigner Polly Tommey to discuss her campaign with you on Wednesday 15 April. However, in the interests of children and families affected by autism, I hope that you will refuse support for her key activities – upholding discredited links between vaccines and autism and recommending unproven and untested fringe treatments.

Blasting? Good grief, where do these fragrant middle class ladies live? Its a statement of fact followed by a wish. None of it isn’t factual and its pretty much polite and to the point.

The fact is that the Autism File _is_ Tommey’s key activity. The other fact is that it is distinctly pro-extreme biomed and upholds links between key anti-vaccine researchers such as Andrew Wakefield. But Arranga sees some more blasting:

Fitzpatrick also blasted The Autism File magazine for including information about vitamins (oh, mercy me) and advertisements from “suppliers of biomedical products” (though none of them as lofty as Merck/Vioxx and Eli Lilly like Fitzpatrick’s cronies’ medical journals), among other things.

What escapes Arranga’s attention is that vitamins used as part of a quack ‘treatment’ for autism is both physically damaging (back in 2006 Mary Megson reported on the case of an autistic boy who was hospitalised by a DAN! doctor following an overdose of vitamins) and damaging to the future of autism research. Oh, mercy me indeed.

But no, Mike mentions the vitamins in passing. Arranga somehow neglected to mention the 15 page feature on Andrew Wakefield in the current issue of Autism File. It is peppered with ads for treatments from various biomeddlers.

Then we get to the ‘undermining’.

Fitzpatrick is trying to undermine the efforts of Polly and The Autism Trust to improve quality of life for autistic individuals and their families, many in woeful situations of deprivation and stress….Polly Tommey will be having meetings with members of the Prime Minister’s team in advance of the promised meeting with Prime Minister Gordon Brown himself. For Fitzpatrick to try to undermine this and to try to deny a charity the ability to do that on behalf of suffering individuals in a country deluged by autism is outrageous.

You can almost see the smoke coming out of Arranga’s ears. And for what? This is nothing but a strawman. Nowhere I can see is Mike saying Tommey shouldn’t go for her meeting with Gordon Brown. And nowhere I can see is Mike saying Tommey shouldn’t do the great things described. What he _is_ saying is that Brown should be very careful about the sort of things coming out of Tommey’s mouth about vaccines, treatments and cures. She is, on these issues, a know-nothing and I think it is absolutely correct for Mike to speak up for the autistic people and parents of autistic people who have no interest in the poor science peddled by Tommey’s publication.

Then after the strawman comes the conspiracy theory, this one bizarrely roping in Brian Deer for some totally mystifying reason:

If it threatens the Deer/Fitzpatrick camp when we want to get better services and supports for 1 child in 60 in the UK and their families, then we have touched a nerve. For example, how can trying to get decent housing and family supports threaten Deer and Fitzpatrick’s current repertoire of witch hunting? Why are they so scared that they would resort to petty tactics?

I mean, huh??? Can’t these people read? And whats this 1 in 60 number? The prevalence for autism in the UK is about 1 in 100. Weird.

Also frothing over in indignation is Oliver Jones, Chair of Autism Trust. He is ‘shocked’ _and_ ‘astounded’ (less caffeine feller):

How dare you act in such an ill informed manner about a campaign that I and many others have invested significant time and effort in – when you evidently have no idea about what we are actually focused upon

Oliver – it seems Mike has a very clear idea. Once again, at no point did Mike say that Tommey shouldn’t meet with Brown or discuss her campaign. He is merely pointing out that Tommey is someone with some decidedly odd ideas about autism treatment and that Brown should show these ideas – if they happen to be raised – the door. He also quite rightly points out that if Tommey is really serious about getting better services and education she should join NAS and support their already existing campaigns in these areas. I’m sorry Autism Trust but the phrase ‘showboating’ does spring inexorably to mind.

Their closing paragraph is genuinely amusing:

Secondly, in respect of Michael Fitzpatrick’s ill-informed letter, we would recommend that we should not seek to highlight this man in the eyes of the UK government, but, instead, we should recommend that people write to him directly. People like Dr Fitzpatrick – like Brian Deer – should simply not be allowed to undermine genuine initiatives such as Polly’s – we cannot allow this censorship.

Yeah, damn that censorship Mike (and Brian Deer again???) -how could you dare to voice your concerns and opinion in a public way? Why couldn’t you just shut up?? Oh wait…isn’t that….censorship…d’uh.

AoA have suggested 2 letter writing campaigns. The first is to deluge Mike’s inbox with emails from AoA readers. The second is to flood the PM with emails supporting Tommey.

Thats fine. But Tommey and AoA should know that a second email campaign is now under way. I’ll ask my readers here to contact Number 10 by writing an email to Gordon Brown c/o Katie Martin (Press Office in Downing Street) on email kmartin@no10.x.gsi.gov.uk or to Michael Ellam (Director of Communications in Downing Street) on email mellam@no10.x.gsi.gov.uk.

I’ll be writing as the parent of a severely autistic child to express my support of Mike’s points regarding Tommey’s beliefs. I hope you will too. And note that AT is an international organisation – US citizens are valid contributors also.

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.