Moderator note: This thread has been split from https://www.s4me.info/threads/feedback-from-stakeholder-engagement-workshop-for-the-nice-guidelines-on-me-jan-2018.1964/ I think I may be a knowledgeable specialist in this field since I did the initial study of mitral valve prolapse in hypermobility syndrome (now EDS3) with Rodney Grahame in around 1978. Rodney and I did a hypermobility clinic. Rodney became convinced that hypermobility caused pain. But since patients were only referred to the clinic if they had pain I could not see how we could deduce that. In forty years I have never seen any reliable evidence that EDS3 cases pain beyond dislocations in a very small subgroup. So I can be a primary source for Rodney's belief. He has talked about nothing else much for twenty years. But in all the time I have seen him give presentations I have never seen a scrap of evidence. There is no confusion about the difference between ME and EDS. They are completely different concepts. The vast majority of people with 'EDS3' are completely unaware of any problem. What needs clearing up is whether there is in fact any association with fatigue and pain at all. I don;t think Rodney can ever have had any information on this because all his observations were on people who had come to him because they had pain. He never saw the people with EDS3 without pain. I really think this is the sort of stuff that should be kept away from the NICE guidelines. It really has no relevance to the management of ME and there is no science behind it.