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) 

 

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Apologies:

Professor Sir Stephen Holgate CBE (Chair/UK CFS/ME Research Collaborative); Neil Riley (Chair ME Association)

 

1: Welcome!

 

Andrew Morris (ABM) opened the meeting by saying he was excited by his new role but stressed he would try to tread sensitively as he settled in, conscious of existing policies, roles and achievements to date - group members should always feel free to speak freely and honestly with the best interests of FME at heart.

 

Margaret Mar (MM) added that clarity, transparency and simplicity were critical characteristics of the culture and practice of the organisation. All members will receive these minutes which will also be published on our web-site.

 

ABM will take minutes which will be distributed for approval within 7 days and on occasion he may add after thoughts in italics having reflected on the issues discussed.

 

Actions are highlighted and presumed to be completed within 4 weeks unless otherwise stated.

 

2: Role  of the Steering Group:

 

  • Setting the overall strategy, policy and direction of FME.
  • Facilitating two-way communication between members.
  • Decisive and effective decision taking where necessary.
  • Sharing new thinking and best practice amongst members.
  • Being the member’s unified single voice on key issues to external bodies - media, government and the medical profession.

 

3. Core Purpose:

 

The following 3 pillars of our mandate were agreed:

 

Sharing, promoting and communicating…

 

  1. Research & Development – the studies and science that may advance the rehabilitation and quality of life of patients suffering from ME.
  2. Support & Care – the best management for patients, families and carers to reduce suffering, enhance chances of recovery and cope with the challenges of ME.
  3. 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.

 

4. Goals & Objectives

 

ABM will draft and distribute our short, medium and long-term goals over the next 2 weeks for approval at the next meeting.

 

5. Delegation of Responsibilities:

 

We need to defer to members on specific areas of expertise in order that we provide the very best advice and guidance and MM agreed to provide a list of individuals that meet the 3 pillars above as well as general enquiries for information. These will be shared with members prior to the next meeting.

 

6. Any other business:

 

  • Sonya Chowdhury (SC) suggested a possible consolidation of FME with CMRC and will discuss further with ABM.
  • SC will share some thoughts with APPG.
  • SC will approach the new Director of ME Action Network to better understand the new landscape within #MEAction.
  • MM will provide a list of potential new members for us to invite to join.
  • Russell Fleming (RF) was concerned about future funding of FME, especially as our ambitions are increasing. ABM will produce a membership fee proposal based on a sliding scale according to scale, structure and circumstances.
  • With increased external profile the web-site needs to be radically refreshed and ABM will prepare a budget and brief so we can progress this.
  • It was agreed to drop the reference to CFS in our communications in future and solely refer to ME.

 

7. Future Meeting Dates:

 

Usually 10am – 11am on the second Wed of the month, proposed as follows:

Membership – May 12th / July 14th / Sept 15th / Nov 10th 

Steering Group – June 16th / Aug 11th / Oct 13th / Dec 15th

 

These dates to be posted on our website.

 

 

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