21ST APRIL 2021
Virtual meeting held on 21st April 2021
Present
Margaret Mar (Founder / ex-Chair)
Andrew Morris (Chair)
Sonya Chowdhury (Chief Executive, Action for ME)
Jonathan Davies (Chair, ME Research UK)
Russell Fleming (Content Manager, ME Association)
Apologies
Professor Sir Stephen Holgate CBE (Chair, UK CFS/ME Research Collaborative);
Neil Riley (Chair, ME Association)
1. Welcome
Andrew Morris opened the meeting, expressing enthusiasm for his new role while stressing sensitivity to existing policies, roles and achievements. Members were encouraged to speak freely and honestly in the best interests of FME.
Margaret Mar added that clarity, transparency and simplicity were critical to the organisation’s culture. Minutes will be shared with all members and published on the website.
Andrew will take minutes, distributed for approval within seven days. Occasionally, reflective afterthoughts may be added in italics.
Actions are highlighted and assumed to be completed within four weeks unless otherwise stated.
2. Role of the Steering Group
- Setting overall strategy, policy and direction
- Facilitating two-way communication between members
- Effective decision-making where required
- Sharing best practice and new thinking
- Acting as a unified external voice to media, government and the medical profession
3. Core Purpose
The three agreed pillars:
- Research & Development – advancing rehabilitation and quality of life for people with ME
- Support & Care – best management for patients, families and carers
- Advocacy & Education – improving understanding of ME to enable diagnosis, prevention and cure
4. Goals & Objectives
Andrew will draft short-, medium- and long-term goals within two weeks for approval at the next meeting.
5. Delegation of Responsibilities
Members should lead in areas of expertise. Margaret will provide a list aligned with the three pillars and general enquiries, to be shared ahead of the next meeting.
6. Any Other Business
- Sonya suggested potential consolidation of FME with CMRC
- Sonya to share thoughts with APPG
- Sonya to approach the new Director of ME Action Network
- Margaret to provide a list of potential new members
- Russell raised concerns about future funding
- Andrew to produce a sliding-scale membership fee proposal
- Website refresh agreed; Andrew to prepare budget and brief
- Agreed to drop use of “CFS” and refer solely to ME
7. Future Meeting Dates
Usually 10:00–11:00am, second Wednesday of the month:
Membership:
12 May / 14 July / 15 September / 10 November
Steering Group:
16 June / 11 August / 13 October / 15 December
Dates to be posted on the website.
