16th June 2021




Margaret Mar (founder)
Andrew Morris (Chair)
Sonya Chowdhury (CEO/Action for ME)
Jonathan Davies (Chair/ME Research UK)
Russell Fleming (Content Manager/ME Association)
Nina Muirhead (Speaker/PAG)
Opal Webster-Philip (Back-up/PAG)
Gemma Hoyes (Note-taker/PAG)


Professor Sir Stephen Holgate CBE (Chair/CMRC); Neil Riley (Chair/ME Association)

(Action points)

  1. Minutes: The meeting minutes dated 16th April were previously approved so they may be distributed to members and posted on our website.
  2. Approvals:
  • 2012 Goals & Objectives paper was approved, together with our short, medium and long-term target audiences.
  • Budget 2021 paper was approved, together with AfME treasury management process with JD’s amendment that AfME raise any issues with SG not the Chair.
  • Governance paper was approved, subject to some minor amendments by JD which will be finalised with MM over the next few days, ready for distribution to members.
  • AM proposes that a 10-day (not 14 day) response time for approvals is introduced, at which point individual SG approvals will be deemed to be given, unless stated otherwise. Please respond to minutes within 7 days.
  1. Champions & Ownership:
  • The following individuals now assume responsibility for issues, strategy and policy in relation to our ‘3 pillars’:
  • Research & Application – Jonathan Davies
  • Support & Care – Sonya Chowdhury
  • Advocacy – Russell Fleming & Education – Nina Muirhead
  • MM has produced a ‘Go To’ list for us to refer and delegate issues relating to individuals experience and expertise. AM will distribute this for comment.
  • AM will defer to these people to lead on guidance and advice going forward.
  1. CMRC:
  • SC advised that discussions are ongoing, and no decision has yet been reached on whether CMRC and F-ME will come together. However, clarity should emerge by early July.
  • Should CMRC and F-ME not come together a decision on PAG representation at F-ME will need be agreed, although NM emphasised she was keen to maintain involvement.
  1. Membership:
  • The draft Membership Agreement was approved, in principle, subject to further details and consideration of the proposed annual membership fees. This is to be provisionally published in Jan 2022 when the value of membership can be better assessed.
  • RF stressed that we need to carefully vet individual membership as these numbers could become unmanageable.
  • SC added that local organisations would also present a problem as there were around 190 support groups in the UK.

MM will introduce AM to the N. Ireland group and SC to two Welsh groups, to widen our geographical influence. NM Knows Jan (WAMES) and MESiG and will make an introduction.

  • AM had a positive discussion with the UK team of MEAction# but MM and JD are concerned about a potential conflict of culture and strategy between our organisations. It was agreed that MM and JD will join AM on a call to their team, ideally including the new CEO in USA, in order to air their concerns and put minds at rest.
  • Partnerships: AM recommended we connect with NB Medical and Red Whale who are commercial organisations delivering CPD to GP’s; NM knows of them and will make an introduction.
  1. Communications:
  • Website: AM outlined plans for the new website that is currently in production, with an anticipated launch date of mid/end July. JD expressed his concern that we’re ‘putting the cart before the horse’ and that this should wait until our strategy and direction is fully formed. Others supported proceeding given that content can be easily amended and updated. Members will be able to include a summary of their aims and activities as well as contact information, brand identity and website link.
  • Conference: AM outlined our intentions to hold a one-day event to bring together all interested parties, solidly unite our community, respond to the new NICE guidelines and attract media attention and coverage. An event in the spring of 2022 was approved in principle and a sub-committee consisting of AM, a PAG representative, RF and SC are to meet to develop plans.
  1. Decode ME: NM advised that 24K have signed up to date although 40K are required for the September deadline. Some confusion has arisen over potential outcomes and datelines of the study so SC will distribute a short paper to clarify this.
  2. AOB:
  • RF recommended that we introduce Teams for members to stay connected and receive updates and will explore this further.
  • It was agreed that we allocate 90 minutes for future SG and members’ meetings as the agenda inevitably increases and more thorough discussion can take place.