Video of Dr Wakefield speaking at the annual meeting of the Association of American Physicians and Surgeons. This story IS going to come out.

[Beachcomber]

Video of Dr Wakefield speaking at the annual meeting of the Association of American Physicians and Surgeons. The story is coming out in the US.

Issues that come up of particular note;

The UK government's decision to use Urabe strain MMR despite information showing it to be unsafe.

Information showing Deer's BMJ articles to be defamation.

Info on how the single mumps Urabe vaccine did not cause meningitis in the way the Urabe MMR did - clear evidence of viral interference in combined live vaccines. Posing a serious question over the safety of the MMR vaccines.

How Professor Walker Smith alerted the government to the work at the Royal Free and the potential problem with the MMR in 1996.

How Dr Wakefield wrote a 250 page report on the inadequate safety data on the MMR, to highlight the problem and argue the case for single vaccines.

A copy of the ethics committe approval for the Lancet case report.

Thank you beachcomber- that's very clear and helpful. Do we have any concrete evidence that there is actually is a massive rise in autism?

And what convinces you about the environmental trigger? Is it not just as likely to be genetic- as I understand it, families often have more than none member on the spectrum- or something to do with brain development.

The study I'm most familiar with is the UC Davis one. It is important because California is known to have an excellent record keeping history on autism rates in the state.

www.ucdmc.ucdavis.edu/welcome/features/20090218_autism_environment/

Of course there is a genetic element. The California twin study suggests that the genetic element has been grossly overestimated.

Studies are important but what convinced me as to the environmental element was all the incredibly similar parent testimonials I have read/heard. They don't just describe a child reacting to a vaccine but often those children have quite similar medical histories (heavy use of antibiotics being one of them).

Sorry bit brief. It's late where I live.

Never did get on to sulphation - maybe tomorrow.

I have not followed all the thread, but regarding twin discordance, this just came out: www.ncbi.nlm.nih.gov/pubmed/22132806

Also, any genetic disorder that is X-linked can be discordant (Fragile X in girl twins for example, Neuroligin-4 is also on the X chromosome).

What I find baffling is that every single paper or article or blog post or study you link to, beachcomber, is just one step away from Wakefield. I realise that it's important to look at the content as well as the provenance, but doesn't make you at all uneasy?

A bigger question- and one I can't find an answer to. Why is it so important to prove that there is an "autism epidemic" and that it is environmental rather than genetic? Who benefits either way? Obviously finding a single cause is a step towards preventing further cases and towards treatment- but that is true either way, surely?

The California twin study, excluded to the best of their ability, twins with a known genetic disorder or a family history of disorder.

No history among proband(s) of neurogenetic conditions that might account for autism (eg, fragile X syndrome, Down syndrome, tuberous sclerosis, and neurofibromatosis).

Certainly as far as Fragile X goes we know that it occurs in around 2 - 6% of children with autism. Fragile X can be detected with a lab test.

Low birth weight has been found to be a factor of risk in the primate study Thoughtful House are carrying out so I guess your study fits in pretty well with that Catherina.

Here

It seems logical that LBW is a factor in how a child deals with environmental toxins for example - weight dose relationship. I suspect it is a factor amongst many and not something that will lead to particularly useful answers if studied in isolation. Just my opinion.

Both weight and age are factors which produce different results when interfaced with environmental exposures.

Age of exposure has been suggested as an important factor in developing asthma after DTP. Go figure.

That primate "study" was withdrawn before publication (see here www.sciencedirect.com/science/article/pii/S0161813X09002228), undoubtedly because of the many problems with it, see here scienceblogs.com/insolence/2009/10/some_monkey_business_in_autism_research_1.php

I don't think anyone thinks there is a single cause of autism. That is why we speak about 'autisms'.

Some of us just think there is one, avoidable cause which is staring us in the face and most people are steadfastly ignoring it. (Or scrabbling around desperately trying to find ways of showing that it cannot be so, depending on how much of a vested interest they have.)

Of course a lot of the information comes from Dr Wakefield or people working near or with him. I already commented on that. Why do you think so much hard work has been done to destroy his reputation? So far the science has not been contested by anyone, apart from Deer the hack of questionable ethics and morals who says the children are not ill (and he doesn't appear to understand the science or the scientific method anyway. Which is hardly surprising, after all he is not the founding father of paediatric gastroenterology nor an academic gastroenterologist).

Lots of the stuff I link to has nothing to do with Dr Wakefield - the UC Davis study on ASD rates. The study on peptides and antibody cross reactivity with brain protein. The twin study. Rosemary Waring's work on sulphation. The DTP/asthma study. The long list gathered by Age of Autism.

I suggest you watch the video I linked to earlier where Dr Wakefield outlines the various hypotheses for some of the biological mechanisms at work in children with regressive autism and GI disturbances. He references a lot of science authored by a lot of different people.

Dr Wakefield et al are helping these children. They are relieving their suffering and, when things go well, and if they get to the children early enough, helping them regain lost skills. What's not to like? No parents complained about Dr Wakefield and Professor Walker Smith - they wholeheartedly and vocally support them. They fly their children to Texas to be treated by him or his colleagues. They come to conferences to hear him talk.

What have Deer and all the others done? They have said 'we do not know what autism is but we know what it is not. Your child does not have GI pain and we know of nothing to help your child other than behavioural therapies.'

They use the word 'coincidence' quite a lot too. Coincidence is the last resort of science, used when all logical and plausible avenues have been exhausted.

So you tell me seeker, what is wrong with these children if Dr Wakefield is so wrong. And how come his diagnoses and treatments help these children?

Because that it what all this is about. Finding solutions for the children already damaged and stopping more children joining their numbers. Period.

as for Fragile X - of course it is only one of the genetic factors contributing to autism. I mentioned neuroligin4 as another example and there will be a number of other X-linked genes that modify penetrance of the ASD in twins. This is not discounting the role of environmental factors, but one should also not too quickly dismiss genetics, just because MZ twin concordance is not 100%.

Instinctively I think Wakefield is a liar.

Actually the primate study had been peer reviewed and accepted for publication in Neurotoxigology. IIRC it had been published in the online version.

They backed down from publishing it in the written journal and removed the online version after the GMC verdict.

Neurotoxigology is owned by Elsevier by the way. The editor of Neurotoxigology stated that the decision to not publish came from her superiors. This is unheard of in medical journals.

It was clearly a political decision and not a scientific one.

Censoring science is something I disagree with myself. The vaccine schedule as a whole has never been tested for safety. About time it was I say but it seems Elsevier disagree.

What about you Catherina?

OK.

Do we have any case studies of children who have been significantly helped or even cured by Wakefield et al?

Why don't you watch the video of him presenting the science to parents and colleges at the Autism One conference in the US too then Posie?

This lecture provides an overview of the "new" autism as a primary disturbance of the immune system and critically, misprogramming of the infant immune system leading to autoimmunity and immunological intolerance.

Central to immune system perturbation is an environmental exposure(s) that result in lymphopenia (reduction in the number of blood lymphocytes). This leads to homeostatic T cell expansion (HTE) in the peripheral lymphoid tissues such as the intestine, in an effort to restore the naive T cell pool. The consequences of HTE include lymphoid hyperplasia, bacterial translocation from the gut into the body, impaired regulatory T cells (Treg) function, colitis, and proinflammatory immune responses directed against intestinally-derived antigens (food and bacteria) and self i.e., autoimmunity. It is proposed that immune responses against intestinally-derived antigens cross-react with host antigens present in the brain, leading to neurological injury. Human and experimental models of immune encephalopathy and experience with HIV/AIDS are used to support this concept in the setting of autism.

Andrew Wakefield, MB, BS, FRCS, FRCPath is an academic gastroenterologist. He graduated in Medicine from St. Mary's Hospital (part of the University of London) in 1981, pursuing a career in gastrointestinal surgery with a particular interest in inflammatory bowel disease. He qualified as Fellow of the Royal College of Surgeons in 1985, and in 1996 was awarded a Wellcome Trust Traveling Fellowship to study small-intestine transplantation in Toronto, Canada. Discoveries made during his work in Canada led him on return to the UK to pursue the study of inflammatory bowel diseases such as Crohn's disease and ulcerative colitis. In 1998, he and his colleagues at the Royal Free Hospital in London reported a novel inflammatory bowel disease in children with developmental disorders such as autism; the condition later became known as autistic enterocolitis. Dr. Wakefield resisted pressure to stop his research on the possible links between childhood immunizations, intestinal inflammation and autism, leaving the Royal Free School of Medicine in 2001. He is involved in many scientific research collaborations in the U.S and abroad, investigations centering on the immunologic, metabolic, and pathologic changes occurring in inflammatory bowel diseases such as autistic enterocolitis, links between intestinal disease and neurologic injury in children, and the possible relationship of these conditions to environmental causes, such as childhood vaccines. During the course of his work on childhood developmental disorders, Dr. Wakefield was increasingly convinced of the need for a research-oriented, integrated bio-medical and educational approach to these disorders, in order to translate clinical benefits for affected children into measurable developmental progress; this is the driving aim of Thoughtful House. As of the beginning of 2007, Dr. Wakefield has published one hundred thirty-four original scientific articles, book chapters, and invited scientific commentaries. He was awarded the Fellowship of the Royal College of Pathologists in 2001; he is medical advisor to the United Kingdom charity Visceral, and sits on the board of the U.S. charity Medical Interventions for Autism.

Obviously I know that dietary changes can make big differences to children with bowel disease.

I'm talking about curing children on the spectrum of other autistic symptoms.

Yes. We do have cases. I doubt any have been published though. The medical journal community would rather mainline mercury than put their arses on the line by publishing a case series of children whose condition has improved at the hands of Dr Wakefield or doctors like him.

Which is very very wrong.

If you look around you will find plenty. Dr Wakefield touches on this briefly in other lectures.

I have to go out now but if people are genuinely interested I will post some info later on.

I will not post stuff for it then to be dismissed or sneered at though. These are real people. (Like Josh is a real person)

seeker, do you mean changes that dietary intervention can bring about, other than better bowel health?

if so (and yes, anecdotal, I know) I can tell you there have been massive changes in my dd, and in several other children I know (as in, know in RL) brought about by dietary changes.

if that is what you mean I can waffle on forever abotu symptoms and traits which have been helped.

"Dr Wakefield et al are helping these children. They are relieving their suffering and, when things go well, and if they get to the children early enough, helping them regain lost skills."

As you say, what's not to like? But if you make statements like this- particularly about regaining lost skills - then it's surely irresponsible not to be able to back it up. Isn't that likely to give false hope to parents?

no, seeker, it's not.

remmeber, no one is claiming that GI issues are causing all autism.

there is a subset of people with autism who are likely to have these issues. they have very similar symptoms, and in those cases, it can be worth a try (the dietary changes).

as BEach has said - no, there is not really anythign published. it is, as a field, in it's infancy - in part because of the denial that seems to be blanket policy.

I touched on this on the BG thread. if you go to the doctor with your child, who has autism, and mentioned GI issues - what you get is 'oh, yes, that is to be expected'

it is accepted that the issues are there. but no one bothers to look further.

this woudl not be acceptable, as an answer form a medical professional, for any other illness. there is no interest in even trying to alleviate the symptoms let alone treat the problem.

and sometimes, it can be a simple treatment - dietary changes.

but even when you can show that changes are brought about, no one is interested - it is all anecdotal. yes, of course, me going to the surgery with my dd is anecdotal. but I can list at least 5 other families I know, in RL, who have been helped in the same way - same symptoms alleviated (other than bowel health), same progresses made (although at different rates, naturally). and, due to SN and the isolated life I lead, I do not know many people - no groups (not even SN ones), dd1's current school is small (20 pupils, and I do not include any of them in the families I know in RL, as she has only just started there), and her last one even smaller. and yet I still know a high proprtion of people who have children with autism who have been helped in this way.

yes, still a small sample. but there are thousands of others. all with the same symptoms alleviated, brought about by the same dietary changes.

I understand that, Silverfrog. And it's fantastic that your child is having some relief.

But is Wakefield not talking about it, or publishing anything?

no just relief, though seeker.

her bowel health is much improved - there is the relief - less pain, more ability ot actually digest her food etc.

but the rest of it cannot be filed under 'relief'. there is so much more to it than 'just' her bowel health improving.

erm, yes, Wakefield talks about it. and yes, there is continuing work being done. none of it 'acceptable' (in the wider world sense).

so - imagine you are a parent of a newly dx'd child. who has GI issues. but everything you have read in the last 15 years ahs been about Wakefiled the monster, the child-experimenter, the maverick who does what the hell he likes, ignores ethical protocols, and laughs about the distress he causes children.

you know, the oft repteated 'truths' about Wakefield (et al).

and the nice doctor, who you trust implicitly, your family doctor who has always done right by you and has been brilliant over the years - he says there is nothing to be done about your child's health problems. in fact, they aren't health problems, they are 'just part of the autism'. no help, no support. nothing.

what do you do? (serious question)

I am the last person to defend Elsevier (I have a retracted article in an Elsevier journal :o ), however, the study design of that monkey study is so poor that it needs more of a conspiracy theory to explain why it go so far in the publication process than why it was eventually retracted.

As for children improving with intervention - are you saying that children on the spectrum do not get better without following Wakefield inspired diets?

no Catherina, no one has said that.

but you cannot expect any one intervention to work for all people with autism - because autism is not one thing, and not from one cause.

What would I do? I have no idea. But I can imagine myself googling like a mad thing, reading something like beachcomber's

"Dr Wakefield et al are helping these children. They are relieving their suffering and, when things go well, and if they get to the children early enough, helping them regain lost skills."

I hope I would then do more research, and not do anything precipitate til I had some hard facts. But I can imagine myself spending money I didn't have on rushing to Texas or wherever and being buoyed up with false hope. Which may not be false hope- but for most parents surely it would be?

there is a reasonably large research project going on into the gf/cf diet - it was based at Sunderland University. it has since moved (can't rememebr the web address now).

anyway, it is a simple (in a smuch as getting an untainted urine sample out of a non-comprehending, non-toilet trained child is simple) urine test.

it indicates whether a gf/cf (amongst other things) diet is likely to be beneficial.

when I had dd1's sample tested, the results at that point were indicating that up to 85% of people with an ASD were likely to be helped, in some way and to some degree, by dietary modifications. I do not have any further up to date info - this was 5 years ago now.

the team are helpful, and knowledgable, and a phonecall away if help and/or support is needed. it is an ongoing project.

I don't really understand the issue you have with Beach's post. it is factual. obviously not everyone can hop off to Texas, or indeed Chester (whre there is a very good and respected practitioner who helps with dietary intervention amongst other things) or Cambridge (where there is another - if you can get an appt). but mainstream acceptance (again, I posted on the other thread about the nhs dietician's refusal to even read the info I was offering her on the SUnderland protocol, and discuss with me why it was/wasn't a good idea - in essence refused to help me - and the gp's refusal to acknowledge dd1's improvements as anythign other than 'coincidence' even when I offered a way for him to observe the 'coincidental' improvements) woudl be one way to prevent people spending money they don't have on trips to Texas.

even just a slight opening of a very-narrowed viewpoint would be an improvement.

Sorry to interrupt the useful posts by silverfrog on treatment.

I just get annoyed by bucketheadness.

Catherina the primate study was peer reviewed and accepted for written publication. It had already been published online.

Linking to some anonymous blogger, who mocks serious issues, and who seems incapable of thinking of the issues at hand outside the limitations of an 'anti-vaccine' mind set, is - lame. Very lame. About as lame as calling plain fact 'a conspiracy theory' actually.

Attitudes like yours are irresponsible if not downright dangerous.

It is all just noise. Bluster with no content. 'Undoubtedly the study must have been so poor, blah blah blah'.

Empty rhetoric.

No the study was not vanished from publication after being peer reviewed and accepted for publication, indeed published online, due to the vague nonsense you choose to be believe.

Some time before the withdrawal, Crammer, the editor of Neurotoxicology, received a letter complaining about the acceptance of the primate study. This was what she replied;

?As Editor of Neurotoxicology this is to inform you that the referenced manuscript has been subjected to rigorous independent peer review according to our journal standards. If you have issues with the science in the paper please submit them to me as a Letter to the Editor which will undergo peer review and will be subject to publication if deemed acceptable.?

She stood by the paper. Right?

Only for it to disappear after the GMC verdict.

When SafeMinds questioned the removal of the primate study, they received this reply (not from Crammer, she declined to comment);

Dear Dr. Redwood [sic],
Aside from any authorship concerns, on reflection the paper is not suitable for publication in this journal. The decision was based on the fact that the paper should not have been accepted in Neurotoxicology and the paper is not suitable for the audience of Neurotoxicology.
Kind regards,
Liz
Elizabeth Perill
Publisher, Toxicology,

When Crammer did decide to comment she wrote the following to Age of Autism;

?Scientific integrity and good science are fundamental principles for publication of research articles in Neurotoxicology. Although rare, the journal withdraws papers whenever these essential principles are cast into doubt. The January 28, 2010 UK General Medical Council ruling of research dishonesty by Dr. Andrew Wakefield cast into doubt the scientific integrity of a new related paper co-authored by Wakefield*. However, it would be inappropriate for either me or the other editors to discuss the specific factors publicly.

Professor Joan M. Cranmer, Editor, Neurotoxicology

So no conspriracy theory Catherina. More like conspiracy fact.

Link - sorry those pesky parents again. They just won't shut up about those sick kids will they.

Let's remember - to agree with the GMC, is to agree that the children do not have bowel disease and that they should not receive treatment.

Your choice.

not interrupting, Beach, just bringing the thread back on track really.

I don't ever mind answering questions re: how dietary changes can help (although even though offered, it seems the info on how other ASD symptoms can be helped is not wanted), but it is a distraction. a related one, sure, but a tangent nonetheless.

and takes it all a long way from he denial that GI issues in children with ASD a) happen and b) result in illness. and that is the crux of the matter.