Minutes of the Members Meeting held on Wed 10th November 2021


A Morris
R Fleming
P White
M Mar
J Kent
Baroness Scott
C Monaghan MP
S Chandler
W Weir
J Sylvester
S Chowdhury
C Shepherd
G Hoyes
C Harrison
S Henson-Amphlett
H Brownlie
J Davies
M Wood
N Speight
N Shakaib


  1. Margaret’s Announcement
  • 13 years after founding Forward-ME, with her primary goal of reforming the NICE guidelines achieved, Margaret announced she will be stepping down with immediate effect. Members expressed their appreciation and thanked her for her enormous contribution and no doubt will be sending her their personal good wishes.
  1. Education Focus
  • The emphasis on educating GP’s on the new guidelines was agreed by all.
  • W Weir recommended this includes the Royal College of General Practitioners.
  • Margaret proposed that relevant training should become mandatory.
  • R Fleming was concerned to avoid duplication and ensure we have a joined up approach.
  • R Ramyar referred to Nina Muirhead’s recent paper which is to be reviewed and taken forward.
  • G Hoyes read out Opal Webster-Philp’s paper which is circulated with these minutes.
  1. Membership Consolidation

Building on prior discussions the group discussed the benefits of uniting some of the major ME charities. Views were varied, but it was recognised that actions and decisions in this area lay with respective boards and trustees of the charities concerned.

  1. Membership Fees
  • A draft Agreement had been circulated in advance for discussion.
  • Whilst the idea was supported in principle, C Harrison and H Brownlie, amongst others, felt that fees should be structured in relation to financial resources, such that more is paid by those that have the financial means to pay, and that others should pay a nominal amount only.
  • J Kent and H Brownlie called for more consultation between the Steering Group and wider membership, irrespective of financial contribution.
  • The Agreement will be amended and circulated shortly so that it may apply from Jan 2022.
  1. World ME Alliance
  • S Chowdhury said there had been no applications to replace M Mar so she, as Chair, would be happy to represent FME.
  • However, S Chandler then volunteered for this role due to his international experience.
  1. SLACK
  • This is to be introduced to improve member communication and G Hoyes and J Sylvester are to set this up and induct members needing help.
  1. Long Covid
  • C Harrison had circulated a paper in advance.
  • This called for greater co-operation between the ME and Long Covid communities.
  • S Chowdhury reassured members that this was gradually happening although at a slow pace.
  1. 2022 Meetings
  • The bi-monthly format will continue in 2022, taking place from 10 – 1130am on the second Wed of the month, as follows:
  • Wed Jan 12th
  • Wed Mar 9th
  • Wed May 11th
  • Wed 13th July
  • Wed 14th Sept
  • Wed 16th Nov