The Minutes from the International ME Awareness Day meeting are now available on Forward-ME’s website.
ME Research UK was represented by Jonathan Davies (Chair), Mrs Sue Waddle (Vice Chair), and Trustee Mrs Lesley Carr.
Amongst topics discussed were
- Steering Group Minutes and concerns over representation.
- Steering Group – Aims, Goals and Objectives
- CMRC/Patient Advisory Group – future relationship
Meeting Minutes –
- 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)
- Publication date of the new NICE guidelines is rescheduled to Aug 18th 2021 and we hope will respect previous recommendations. Charles and Margaret will recommend our response following publication.
- Item (6): Decode ME recruitment scheduled for Sept ’21 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 we invite leading specialists to attend relevant Steering Group meetings to ensure their voice is heard and we receive the best advice available. This approach will be discussed further at the next SG meeting.
- Core Purpose: It was agreed to amend (i) R& D to ‘Research & Application’ as follows:
- Sharing, promoting and communicating…
- 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.
- Sharing, promoting and communicating…
- Budget & Resources: Neil Riley is concerned that our goals are unrealistic as we are all stretched with no excess capacity. It is hoped that if we work smart and spread the load we can make solid progress against our 3 ‘pillars’ whilst seeking some funding to support our ambitions.
- 2021 goals & objectives: Andrew speedily summarised these which were previously distributed and are set out
- New Chairman: Induction, training and introductions to key influencers
- New Steering Group: Select team and become productive
- Governance: Put appropriate checks, balances and processes in place to provide stability – paper to follow shortly.
- Membership: Meet the members and develop eligibility criteria and formalise fees/agreements.
- ‘Champions’: Agree individual specialists to champion our cause and activities
- Decode ME: support sign-up of the 20,000 participants.
- Consolidation: Review joining with other related organisations and merging existing charities
- Website: Redesign and re-launch
- Funding: Secure funding for operational expenses
- New NICE guidelines: Review, respond and create media/medical awareness.
- Annual Conference: Discuss merits and options going forward
- Review progress against our 3 Pillars:
- Research & Application
- Support & Care
- Advocacy & Education
4. CMRC/PAG potential merger
Sonya outlined the thinking and benefits which are supported by Stephen Holgate who is retiring as Chair shortly and, following their achievements, are looking for the next stage and challenge in their programme. This would also help to address the SG composition issues discussed earlier and the move was generally supported. PAG are to agree on a representative to join the FSG, as well as an alternative, and advise Andrew prior to the next meeting on 16th June. Sonya will explore the coming together of the organisations through engagement with SH and CMRC board.
Christine Harrison raised concerns about the disability benefit system and has written to Andrew to explain this issue in greater detail.
6. Future meetings
The bi-monthly meeting dates are agreed with a 60+ minute duration, namely May 12th; July 14th; Sept 15th; Nov 10th.