ME Research UK’s main points from Forward-ME Meeting held on 10th July 2019 and attended on our behalf by Vice Chair Sue Waddle.

  • Medical Schools Council
    • Nina Muirhead said she had sent a questionnaire to medical schools and more than half said they do not teach ME/CFS but most are willing to receive information on it. It being suggested that the Group get a set of names from each region of patients who are willing to go into medical schools and help educate health professionals.
    • Dr Willy Weir said one of the obstacles is that many doctors still believe ME/CFS is a psychological disorder and, although evidence to the contrary is compelling, many of these doctors don’t seem to want to understand.
  • NICE Guideline Review
    • The Chairman said she had been advised that the work of the NICE Guideline Committee should not be discussed in detail by Forward-ME.  Charles Shepherd explained that he and Willy Weir are members of the Committee. He had spoken to the Chairman of the Committee who had confirmed that he and Willy may tell us what subjects have been discussed at NICE Committee meetings but not the outcomes of the discussions. They had, for example, discussed medical training but they were not permitted to reveal the details.
  • PR Proposal to Whitehouse
    • The theme should be “what ME patients want” – which is to be heard, their problems to be carefully considered and to be treated as human beings.
  • DWP
    • Meetings with Minister for the Disabled at DWP and contact made with Capita and IAT (Atos).
  • Research
    • Sue Waddle distributed copies of a handout on recent research projects.

Full Minutes available on ME Research UK’s website.