12TH MAY 2021
Virtual meeting held on Wednesday 12th May 2021 (International ME Day)
Present
Andrew Morris (FME Chair)
Margaret Mar (FME Founder/Former Chair)
Sonya Chowdhury (Action for ME)
Sam Bromiley (Action for ME)
Christine Harrison (BRAME)
Janice Kent (ReMember / Chronic Fatigue Society)
Bill Kent (ReMember / Chronic Fatigue Society)
Sue Waddle (ME Research UK)
Jonathan Davies (ME Research UK)
Lesley Carr (ME Research UK)
Russell Fleming (ME Association)
Neil Riley (ME Association)
Charles Shepherd (ME Association)
Susan Henson Amphlett (Tymes Trust)
Helen Winning (ME Trust)
Tony Crouch (25% Group)
Nigel Speight (ME Association / 25% Group)
Nina Muirhead
Catherine Frazier (C Monaghan / MP’s Office)
Baroness Scott of Needham Market (House of Lords)
Simon Chandlers
Debbie Holden
1. Apologies
Willy Weir; Stephen Holgate (Chair CMRC); Nathalie Hilliard; Sam Bromiley; Jane Colby (Tymes Trust); Debbie Burgess (Tymes Trust); Simon Laurence (25% ME Group); Tanya Harrison (BRAME); Carol Monaghan MP (FME Deputy Chair).
Observers from PAG
Rachel Ephgrave; Phil Murray; Gemma Hoyes; Susan O’Shea; Opal Webster-Philp.
2. Previous Meeting Minutes (16.03.21)
Action points:
Publication date of the new NICE guidelines is rescheduled to 18 August 2021 and we hope will respect previous recommendations. Charles and Margaret will recommend our response following publication.
Item (6): Decode ME recruitment scheduled for September 2021 with a target of signing up 46,000 participants, currently on track with 25,000 to date. Sonya Chowdhury to lead/co-ordinate ongoing progress.
3. Steering Group Minutes (21.04.21)
Group composition:
Some members are concerned that the group lacks representation from:
(a) small charities
(b) medical/scientific/clinician field
(c) patients
Andrew is reluctant to increase the size of the group as this would inevitably lead to slower decision making, but recommends inviting leading specialists to attend relevant Steering Group meetings to ensure their voice is heard and the best advice is received. This will be discussed further at the next SG meeting.
Core Purpose:
It was agreed to amend R&D to Research & Application, as follows:
- Research & Application – the studies and science that may advance understanding of the cause, treatment and quality of life of people suffering from ME.
- Support & Care – the best management for patients, families and carers to reduce suffering, enhance chances of recovery and cope with the challenges of ME.
- Advocacy & Education – creating a clear and contemporary understanding of ME amongst the medical profession, media and government with a view to speedy and accurate diagnosis, prevention and, in time, a cure.
Budget & Resources:
Neil Riley is concerned that goals may be unrealistic due to lack of excess capacity. It is hoped that by working smart and spreading the load, solid progress can be made across the three pillars, while seeking funding to support ambitions.
2021 Goals & Objectives
- New Chairman: induction, training and introductions to key influencers
- New Steering Group: select team and become productive
- Governance: checks, balances and processes to provide stability (paper to follow)
- Membership: meet members, develop eligibility criteria and formalise fees/agreements
- Champions: agree individual specialists to champion activities
- Decode ME: support sign-up of 20,000 participants
- Consolidation: review joining with related organisations and merging charities
- Website: redesign and re-launch
- Funding: secure operational funding
- NICE guidelines: review, respond and create media/medical awareness
- Annual Conference: discuss merits and options
Review progress against pillars:
Research & Application
Support & Care
Advocacy & Education
4. CMRC / PAG Potential Merger
Sonya outlined the thinking and benefits, supported by Stephen Holgate, who is retiring as Chair. This would help address Steering Group composition issues and was generally supported. PAG are to agree on a representative (and an alternative) to join the FSG and advise Andrew ahead of the 16 June meeting. Sonya will explore engagement with SH and the CMRC board.
5. Any Other Business
Christine Harrison raised concerns about the disability benefit system and has written to Andrew outlining these in more detail.
6. Future Meetings
Bi-monthly meetings of 60+ minutes agreed:
12 May; 14 July; 15 September; 10 November.
