Minutes of the Members Meeting held on Wed 12th January 2022

  1. PWME images:
  • P White introduced Simon McGrath who presented his recommendations on improving photography of PWME for media purposes.
  • Simon will produce a series of images showing different conditions and situations for P White to edit for use by members going forward.
  • These will accompany press releases to facilitate ease of use by picture editors.
  1. Demonstration/Awareness:
  • The idea of a co-ordinated national or global demo was recently discussed at the SG meeting and the Chair sought views on support for this initiative.
  • Members broadly supported the concept of strengthening ME Day on 12th May to increase awareness, improve medical treatment and hopefully research, possibly to include a conference.
  • An option would be to get behind the ‘Millions Missing’ event and the Chair will progress discussions with #MEACtion UK.
  • The World ME Alliance are working on logo/badge for widespread use which should be available next month, although BRAME’s existing Blue Ribbon will also be considered.
  1. Long Covid:
  • C Harrison aired her ongoing concerns about the lack of collaboration between ME and Long Covid research funding (reportedly £18M) and support, despite sharing many similar symptoms.
  • S Chowdhury was cautiously optimistic that there is increasing focus at a political level and we were moving towards recognition that experience of ME will be of value to the 1.3million affected by Long Covid and vice-versa.
  1. NICE – GRIP Statement:
  • A draft has been received regarding implementation by the medical community following the revised guidelines, which, on the whole, were empathetic and positive.
  • This would involve workshops with relevant stakeholders to clarify changes to managing treatment.
  • The draft has recently been commented upon by SG members although further points were made by C Shepherd which are to be forwarded to Heather Stephens at NICE.
  • We will include medical insurers for both doctors and patients who potentially have significant influence.
  1. The ME Trust:
  • Helen Winning announced the impending merger with AfME which should be formalised very shortly.
  • Accordingly, this is her last meeting and ME Trust’s details are to removed from the members page of the FME website.
  1. SLACK:
  • Members are encouraged to sign up to the app as this is becoming an important means of communication for us.
  • Simon Everitt offered training to those who need some assistance with this.
  1. Decode ME:
  • S Chowdhury gave a brief update.
  • 27,000 have so far applied to be part of the study (which is yet to commence) although this number may reduce due to eligibility criteria.
  • A more detailed update will be prepared for the next meeting.
  1. AOB:
  • Nina said she’d received an excellent document from BRAME which they would be working on together and that they could hopefully bring to the next full meeting in 8 weeks time.
  • The Chair reminded members of our policy to solely refer to ‘ME’ and to drop ‘CFS.’


The next meeting is on Wed Mar 9th from 10 – 1130am.