Notes of Meeting Held on 28th March 2018

  1. Present: Countess of Mar (Chairman); Carol Monaghan MP; Dr William Weir; Dr Charles Shepherd (ME Association); Jane Colby (Tymes Trust); Sarah Reed (#MEAction); and Clare Ogden (Action for ME).
  2. Apologies: Hannah Clifton, Dr Paul Worthley and Dr Gareth Tuckwell (ME Trust); Bill and Janice Kent (ReMEmber); Cath Ross and Tony Crouch (25% ME Group); and Christine & Tanya Harrison (BRAME).
  3. Science Media Centre – There was discussion about the Science Media Centre Factsheet “CFS/ME – The illness and the controversy” which was published on the SMC website on 20 March 2018. It was agreed that the Chairman would write to the Chief Executive and to the Chair of the trustees of the SMC to object to the inaccuracies and distortions and to request that the factsheet be retracted.
  4. Dr Diane O’Leary
    Dr O’Leary presented a paper on the move within the WHO International Classification of Disease team working on the ICD 11 revision to reclassify a number of disorders previously grouped as MUS (medically unexplained symptoms) into one large symptom cluster with criteria that would be used in primary care and which would ensure that all patients who qualified would be offered mental health care rather than medical care. None of these criteria were evidence-based. (See “Bodily Stress Syndrome” info sheet NB Updated) .The group discussed Dr O’Leary’s concerns and various actions were suggested. These included –
    Publication of the info sheet on Forward-ME website with members either linking to it or publishing it themselves. It was agreed that this would not be done until after 12 April 2018 as there were to be discussions with the WHO. (N.B. Subsequently, it was decided between the Chairman and Dr O’Leary to publish the info sheet as it was important that the information be disseminated as soon as possible).
    The Royal Colleges of Physicians and of General practitioners might not be aware of the effects that this reclassification would have on their members’ diagnosis of patients’ symptoms so the Chairman agreed to write to them.
    Other organisations representing people with MUS should be alerted so that, if they wish, they can make representations to the WHO. The Chairman would find as many of them as possible.
    It was agreed that there should be another meeting soon so that further activities could be organised.
  5. Any other business
    Christine Harrison reported to the Chairmen that she was in regular contact with staff from Capita and that they were working on a new training programme for health professionals.
    Charles Shepherd said that he was doing the same with Maximus.
    Bill and Janice Kent asked that they be involved in any action that was to be taken with regard to BSS.
  6. Date of next meeting
    The next meeting would be held at 2.00 pm on Tuesday 1 May 2018.