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Montagnier and the Autism Treatment Trust

22 Nov

This summer the Nobel Prizewinner, Luc Montagnier, seemed to lend credibility to homeopathy.

French virologist Luc Montagnier stunned his colleagues at a prestigious international conference when he presented a new method for detecting viral infections that bore close parallels to the basic tenets of homeopathy.

Although fellow Nobel prize winners — who view homeopathy as quackery — were left openly shaking their heads, Montagnier’s comments were rapidly embraced by homeopaths eager for greater credibility.

Montagnier told the conference last week that solutions containing the DNA of pathogenic bacteria and viruses, including HIV, “could emit low frequency radio waves” that induced surrounding water molecules to become arranged into “nanostructures”. These water molecules, he said, could also emit radio waves

He suggested water could retain such properties even after the original solutions were massively diluted, to the point where the original DNA had effectively vanished. In this way, he suggested, water could retain the “memory” of substances with which it had been in contact — and doctors could use the emissions to detect disease.

Luc Montagnier won his Nobel Prize just two years ago, for the discovery of HIV in 1983.

The excellent Gimpy’s blog reports that Montagnier has turned his eye towards autism. He is seeking to use his new found ability to detect infections using “low frequency radiowaves” at the Autism Treatment Trust with a Dr. Skorupka and Dr Amet. Skorupka is described as a DAN! practitioner from Paris; Dr Amet is a neuroscientist, but not a registered medical practitioner. As readers of this blog will be aware DAN! (Defeat Autism Now!) practitioners use non-standard biomedical treatments that have little in the way of supporting evidence. Often “studies” in this area (in the US) will be funded by parents.

The Montagnier study as published at the Autism Treatment Trust, hopes to use Montagnier’s alleged ability to detect viruses and bacteria from the “low frequency radio waves” they emit. Montagnier is of the view that “some abnormalities in autism as well as in a whole range of neurological conditions, such as chronic fatigue and multiple sclerosis may be caused by potential infective agents.”, and has recently received a grant from the Autism Research Institute to study bacterial DNA in autism.

There are three main aims to the study:

1- Investigate the possibility that some cases of autism are associated with a range of bacterial infections, based on laboratory testing and clinical examination conducted by Dr. C. Skorupka in Edinburgh.

2- Assess the ASD children for the presence of nanobacteria following Prof Luc Montagnier’s protocol of investigations. The protocol would require a blood draw conducted at the clinic with the help of our nurse. The blood normally has to be centrifugated immediately and the supernatant extracted, then frozen to -80C and shipped on carboice to France.

3- Evaluate the efficacy of antibiotic intervention as well as behavioural evaluations (ATEC and ADOS). This would involve meeting with Dr Skopurpka and Dr. Amet every 2 months and reviewing progress over the phone in the interim month.

The opportunity to take part in this study is going to cost parents serious money:

Cost of study: £1800 (over 6 months).
Antibiotic treatment: £30-60 a month.

For that, you will get:

1. A scan using Montagnier’s new “resonance” screening system for bacterial and virological material.

2. A “very sensitive PCR assay”

3. A progress review by Dr Skorupka and Dr Amet every two month’s, plus interim phone reviews.

4. A blood test at the start of the treatment, and after 6 months of treatment.

5. Behavioral evaluations at the start, and after 6 months of treatment.

The study is restricted to 12 autistic children, involves PCR, has no controls, and involves blood tests. Any alarm bells ringing yet?

The webpage about the study does not show evidence of authorisation by the MHRA (perhaps surprising given the anti-biotic treatment), or having undergone any ethical review in the UK (perhaps surprising given the blood tests and antibiotic treatment in a vulnerable group of children). I have emailed the Autism Research Institute to ask for clarification on this point, and have yet to receive any confirmation of any authorisation. I have therefore emailed the National Research Ethics Service and the MHRA Clinical Trial unit to see if they are aware of the study being registered.

In 2008, when Montagnier was receiving his Nobel prize, The Daily Mail ran a news story “The Great Autism Rip-Off” about the biomedical industry that feeds on vulnerable families with autistic children. The Autism Treatment Trust and Dr Amet were featured in the article (consultation £120, £480 for tests including urine and hair tests, follow-up £400).

At the time, Richard Mills, a director of Research Autism, stated:

“Many of the practitioners who sell these treatments are no better than snake-oil salesmen. This kind of hard-sell approach is completely immoral. Lack of regulation means anyone can set themselves up and claim to be able to successfully treat autism, without any proof that it’s actually possible,”

Who would have guessed that an industry the Daily Mail exposed, would eventually attract the interest of a Nobel Prize Winner?

See also Gimpy’s blog on this study as well.

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.