Minutes of the meeting of The Forward with ME Group October 17th 2017

[Countrygirl]

http://www.meresearch.org.uk/news/forward-me-group-minutes-17th-october-2017/

Minutes of the Meeting held in Residence 2, House of Lords, Tuesday 17 October 2017, 2.00 pm

Present: Countess of Mar (Chairman); Janice & Bill Kent (reMEmber); Hannah Clifton (ME Trust); Jane Colby & Anita Williams (TYMES Trust); Tony Crouch (representing 25% Group and TYMES Trust); Clare Ogden (Action for ME); Dr Charles Shepherd (ME Association); and Dr Paul Worthley (ME Trust).
In attendance: Dr Max Davie (Paediatrician).

1. Apologies had been received from Christine Harrison (BRAME) and Sue Waddle (MERUK).
2. Dr Max Davie
   1. The Chairman welcomed Dr Davie who explained he was a Consultant Paediatrician with Evalina London Children’s Healthcare, Guys and St Thomas’s NHS Trust working in the community in Lambeth and based at the Elephant and Castle. He was also Assistant Officer for Health Promotion at the Royal College of Paediatricians. He had a particular interest in “unexplained illnesses”. Although not an expert in ME/CFS he had acquired a lot of knowledge of that condition. He then invited our questions.
3. Discussion and Questions
   1. Jane Colby introduced herself and explained her background. She said the problem of discrimination against children with ME existed in all areas. She outlined a number of cases where children and/or parents had been badly treated by schools, GPs and Social Workers. A common problem was apparent lack of understanding of the illness and the assumption that children were not really ill.
   2. Dr Davie agreed there was ignorance of the condition on the part of doctors and others. Jane went on to explain that sufferers feel so ill they cannot face interacting with others. Dr Paul Worthley added that recovery to any extent takes a great deal of time. Jane went on to explain how children can suddenly “go off” with the illness; they may not be aware themselves of what is happening. Knowledgeable doctors can spot this, she said, but there are not many of them.