ME Research UK’s main points from Forward-ME Meeting 8th May 2019

  • On NICE Guideline Review
    • Countess of Mar said she had concerns that NICE were relying too much on old research; they should be keeping up to date with current research.
    • Dr Willy Weir said he also had concerns because some in the medical profession (notably psychiatrists) were claiming – wrongly – that bedbound patients have a different illness.
    • ME patients do NOT have to undergo psychological therapies. Countess of Mar has been told repeatedly that participation in such therapies is purely voluntary. She directed that this should be stressed in the Minutes. Dr Willy Weir added that this is covered in the NICE Guideline, and that all the medical profession should read the work of David Tuller.
  • RCGP Conference 2019 (Liverpool) – Forward-ME Group will attend and have been allocated a corner stand. It was agreed to have a single large Forward-ME poster.
  • On research
    • Meeting provided with ME Research UK research literature.
    • Query whether ME Research UK and the UK ME/CFS biobank might work together on certain research.
    • ME Research UK indicated that it hoped to play a more pro-active role in future – identifying and promoting areas where the charity felt warranted research in addition to re-actively assessing and funding applications received.
  • DWP
    • Dr Willy Weir attended a training session with Capita and IAS. He had been able to explain to them about anaerobic thresholds and other recent findings.
    • At training session on ME for IAS and Capita, Christine Harrison (BRAME) and Dr Willy Weir had reported that she had been able to convey the reality of ME, the reality of living with ME, its impact on daily life and mobility in respect of PIP and also the impact and life changing effect on the sufferer, carers and the whole family.
  • AOCB
    • Sam Bromiley (AfME) asked about the debate in the chamber of the House of Commons last January. Had anything more come out of it? Katherine Ladd (researcher to Ms Monaghan MP) said Ms Monaghan would like to take things forward but so far nothing had happened.

Full Minutes – available on ME Research UK’s website.