David Noakes and the GcMAF controversy – Catherine Hall, the head of The National Autistic Society for Guernsey, speaks out.
I can readily understand how parents are desperate to find solutions, how unsupported they can feel and how vulnerable they are to the idea that there might be a quick fix solution to the challenges they and their child face.
I am not against any appropriate intervention or treatment that might help people with autism. I am however against the exploitation of vulnerable children and the sale of untested and potentially dangerous experimental products.
GcMAF is, as David Noakes is at pains to point out, a naturally occurring part of the immune system. This is probably the only thing he has said that I could agree with. It is clear that the has no real understanding of the complexity and range of neuro developmental differences that occur within the umbrella diagnosis of autism. The rationale for the use of GcMAF to treat autism is based on the unsubstantiated opinion that autism is a disease caused by viruses and the unproven theory that giving additional GcMAF can stimulate the bodies own immune system to fight this supposed viral disease.
GcMAF is derived from human blood, it is administered via injection, nebuliser or suppository which means it has to be classified as a medicinal product. As is has not been fully tested for safety or efficiency it remains an experimental product and should only be used to treat people under full medical supervision as part of clinical trials.
The only published study I can find on the use of GcMAF in autism is a small scale is an open label study by Dr Bradstreet. It isn’t a very robust study, the subjects are self selected ( their parents already believed that their children were ill and were actively seeking treatment) many seemed to have additional gastrointestinal symptoms or seizures. Some were also receiving other biomedical intervention and/ or therapies and special education programs. Progress was monitored by an ‘in house’ checklist rather than by any standardised measure of autism symptoms. Even Dr Bradstreet admitted that the results were inconclusive. This study seems to be the main basis for Dr Bradstreet and Immuno Biotecs claims that GcMAF can cure autism.
I cannot find any research documents or clinical trial results that support the use of ultrasound/ GcMAF treatment for anything at all and certainly not autism. There are very few papers written on GcMAF and autism and all of them appear to have been written by people with vested interest (that is who are selling GcMAF treatment) and are there for subject to bias.
All other ‘evidence’ provided by Mr Noakes to support his claims seems to be anecdotal. Statistic he quotes are skewed as he is only basing them on a small percentage of patients treated. Mr Noakes himself has admitted in interviews that he doesn’t get feedback from most of the people who buy GcMAF.
I find it absurd and somewhat arrogant of Mr Noakes to question the morality of the mothers of children with autism who decline to use GcMAF. He is the one selling an unlicensed product that has not been thoroughly tested for safety or efficacy, based on an unproven theory as to the cause of autism. He has been promoting its use to treat vulnerable children without medical supervision or long term follow up.
Hope this clarifies my position. please feel free to quote any of this email or the attached newsletter statement.
PS. My eldest doesn’t mind his case been used as an example of how people with autism can mature and develop. He had delayed and disordered language development and lots of challenges through his early years. At 7 he was assessed as having low IQ and Moderate Learning difficulties. By the time he was 12 he was coping in a mainstream school, he eventually passed his GCSEs and A Levels, D of E bronze, silver and gold, various school prizes including artist of the year ( twice). He is now an undergraduate, living independently in a flat in London. He is politically aware, has strong moral values, and is son any mother would be proud of – what’s to cure?”.
See below for the statement I published in the Guernsey Branch newsletter. As you will see it is expressed in very moderate and neutral terms. I am only too aware of the polarised opinions that parents have about autism. I am in a very different place myself in terms of knowledge, understanding and personal perspective on autism to where I was 15 years ago when I was trying to cope with two small boys with autism and a new baby.