Minutes of the Members Meeting held on Wed 11th May 2022

1. Apologies: Suzie Henson-Amphlett; Simon Chandler; Helen Brownlie; Sonya Chowdhury; Janet Sylvester; Christine Harrison.

   1. Actions/Updates from previous meetings:
   2. Opal Webster-Philp will recommend a replacement for Nina Muirhead on the Steering Group who can continue to provide professional medical input.
   3. Peter advised that the NICE GRIP Statement is due to be published on May 12^th.
   4. Denise Spreag advised that 755 have registered for the Millions Missing virtual event on 12^th May and the live September event will be on the second Tues or Wed in September. This is likely to be focused on Parliament Square, as well as nationally, and may be held alongside a separate CMRC conference. The theme is post viral disease signified by a red thread. She will circulate a ‘how to get involved’ email to all members who wish to support the event.
   5. Charles Shepherd advised that the APPG Report on ME is due to be launched on May 25^th at 1530 at Portcullis House, Westminster and 1 person from each FME member is welcome to attend. Peter White stressed the need for relevant social media images and content and will liaise with AfME’s media person to ensure this happens.
   6. Charles has arranged a meeting with Martin Marshall of RCGP on 16^th June at 1545 and Willy Weir agreed to attend. This meeting is designed to soften our relationship and harmonise our approach and to ensure the new NICE guidelines are respected.
   7. Discussions with the DHSC are continuing in a positive fashion.
   8. Charles is to liaise with NE Essex/Suffolk CCG to produce a standardised Service Specification which can be used as a clinical pathway in the future. Alexis Johnys and Tony Crouch are to be invited to attend the next SG meeting on 15^th June to progress this and we will ensure we collaborate with Doctors with ME and BACME on the final document.
   9. Fundraising and Investment:

   Peter presented a summary of the extensive analysis he’s been working on identifying the significant financial gap between the ME sector and other Western chronic diseases. Resolving this could drive significant increases in funding for research, advocacy and care.

    

   The slides are available upon request and the full report will be published in due course.

   The report from 2019 data shows that:

   • The combined spend of the main ME charities per person is £9.58.
   • This compares with £311 for MS; £289 for Parkinson’s UK; £1,559 for Cystic Fibrosis Trust; £48.20 Sickle Cell Society; £90.70 Muscular Dystrophy UK; £133 Alzheimers’s Society; etc..
   • We collectively raised £2.65m in 2019 and spent £1.9m, with reserves of £3.13m or 1 year 8 months of runway, too great to be eligible for many grant funders.
   • Our combined membership is almost 8,000 compared to 28,000 for the MS Society and 40,000 for Crohns & Colitis UK.
   • Regular and repeat donations are significant funding sources for other charities as a highly effective ways to achieve sustainable income but are currently far lower for ME than comparable diseases.

   Andrew will be discussing this situation with our Deputy Chair and heads of the three main charities to consider their views and explore options as to how this situation can be strategically addressed.

   3. AOB:
   • Tony Crouch welcomed the new guidance for social workers on FII and perplexing presentations from the British Assoc of Social Workers( BASW) which provides some counterbalance to the RCPCH guidance.

   He has requested that FME consider an approach to the RCPCH to discuss the problems that arise from their guidance on “Fabricated and Induced Illness (FII) and perplexing presentations”. Families of children with ME are often treated with suspicion and sometimes made subject to safeguarding investigations because they appear to trigger the red flags in the RCPCH guidance.

   • Gemma Hoyes underlined the importance of closer collaboration and this was agreed and noted.

    

   4. Next Meetings:
   • SG Meeting 10am Wed June 15^th
   • Members Meeting 10am Wed July 13th

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