Jonathan Edwards
Senior Member (Voting Rights)
@Jonathan Edwards I want to push back on that point about the critic at UCL. I wasn't at the UCL meeting of course but I don't get the impression this person was acting in good faith. The tone was aggressive to the point that people came up to Audrey after her talk to apologise for his behaviour.
Yes, @chillier, but I was there, listening to the comments, and chatting with Audrey, and she didn't seem to think much of it at the time, other than that a rather large physician had made what was probably a valid point in a rather vocal way. I think she was a bit surprised when the chair of medicine sent both of us an apology. The physician in question often raises questions rather forcefully. English is not his first language. I think some of those present mistook his usual manner for rudeness to a visitor.
He was warning Audrey not to use ME because it will put off medical people who might actually engage with the science. If my hearing was better and I had followed exactly what his roundabout outburst involved I would have turned to Audrey and said, yes, he is right, we should stick to ME. It may seem odd that he raised Simon Wessely but it makes sense. Wessely's original point was that although there was a real illness which he called CFS, ME was an idea of an illness that probably did not exist. In an important sense he was right, but the Canadian Consensus group had the insight to see that the real illness is the intersection of Wessely's CFS concept and a symptom of the chronic ME concept that Ramsay had not quite got clear - PEM.
I don't think this man was supporting Wessely. He was arguing for encouraging consensus rather than re-igniting the patient/doctor slanging match. His own approach to treatment is a bit unclear but I don't think he was acting in bad faith.
We have all used ME as less cumbersome, but we are at a critical point in the history of the science where we now have studies based squarely on the ME/CFS concept. They will show that ME/CFS is a real illness. I look forward to telling the sharpest sceptic in UK Medicine, Robert Souhami, that there is an answer to his question 'why treat it as a separate illness?' And any hint that we think ME/CFS can be equated with ME is going to seriously dent credibility. We are not going to be investigating ME as conceived by Acheson, or by Wessely, or indeed by 'ME specialists' or even some current ME charities. We are going to see the science of the real illness. Maybe it should be Science for ME/CFS, Action for ME/CFS, the ME/CFS Association but anachronisms can be tolerated in institutional names for longer than in the science. There may well be a completely new name soon enough - or more than one.
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