Notes of meeting held on Wednesday 28 March 2018
Hannah Clifton ME Trust, Dr Paul Worthley ME Trust, Dr Gareth Tuckwell ME Trust, Bill and Janice Kent ReMEmber, Cath Ross 25% ME Group, Tony Crouch 25% ME Group, Christine and Tanya Harrison BRAME.
Carol Monaghan MP, Dr William Weir, Dr Charles Shepherd ME Association, Jane Colby Tymes Trust, Sarah Reed #MEAction, Clare Ogden Action for ME, Countess of Mar (Chairman).
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 ICD11 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).
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.
Note: A further communication about the possible changes to WHO coding has subsequently been placed on the Forward ME website dated 9 April 2018.
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.