The basic problem, Jen, (
@JenB) is that physicians talk a lot of rot. Having a diagnosis on your chart may mean nothing. I started out my career doing the hypermobility clinic for the 'top EDS specialist' in the UK. I rapidly came to realise that all the theories were just self-fulfilling speculations - like Freudian psychology.
I will be up front about this. People with ME have had a raw deal as much as anything, as Duncan suggests, because the field has been full of second rate physicians. The stuff presented at conferences just is not up to a basic standard. And much of the problem is that instead of focusing on the real illness, ME, physicians go off into weird and wonderful pseudo physiology because they think it sounds clever. The more they do that the more people like Simon Wessely are entitled to say that patients are just picking up unhelpful beliefs.
Medicine has changed dramatically in the 40 years I have been in it. When I read for my senior physicians' exam in 1976 I used an American textbook called Harrison, and learned every fact there was to learn in medicine (it was possible in those days). I used an American text because it was exhaustively referenced with actual evidence, unlike UK texts which had few if any citations. That tradition came to a peak in the 1990s when those of us who provide chapters for textbooks had to have a rigorous evidence base either side of the Atlantic.
Everything has now changed. The journals have become commercial enterprises happy to publish any rubbish that authors will pay $2000 to get on their CV. Medical meetings have been taken over by commercial interests and are mostly about selling stuff, no matter what the quality. Because we believe in free speech 'special interest groups' are allowed to talk drivel to each other with nobody bothering to point out that it has no basis.
At a recent dinner organised to bring together the good and the great of ME research in London I looked around and realised just thin things were. There were maybe three scientists there I would rate as knowing what they were doing - all outside the field of ME itself.
So the fact that there are 'ME experts' who say this or that at conferences means nothing to me. I want to see the factual basis of what they claim published in a way that can be assessed in the way any other medical science is assessed.
If these so-called associations with 'EDS' or 'MCAS' were real they would have been published by people like me in the 1970s. I won't hold my breath for publications in the next year or two.
And don't you think it might be irresponsible to set up a webpage where anyone can put in their suggestions and that purports to give people medical advice? There are good reasons for not taking things by mouth before anaesthesia - like dying from aspiration pneumonia. Being cautious rather than sorry is to me not putting up medical advice unless it is well established.
Surely what we want is a science of ME, not a pseudo-science of all the syndromes supposed to link to ME.
The more patients focus on these supposed associations the more they will be ignored and ridiculed by physicians behind their backs. I have seen that for fifteen years first hand in my old department.
