Minutes of the Members Meeting held on Wed 16th November 2022

Apologies: Baroness Scott of Needham; Russ Fleming; Sonya Chowdhury.​

1. Millions Missing Events

• Denise Spreag reported on a successful event London on 18^th
• Denise mentioned that #MEActionUK were now considering their next campaign initiatives.
• Janet has subsequently provided the following additional information:
• #MEAction had very different objectives in Scotland as we are campaigning to get a new Scottish guideline in place (based on the NICE guideline). The Millions Missing event was aimed firmly at MSPs and was highly successful, with 20 MSPs coming out of Holyrood to sign our pledge. The Cabinet Minister for Health, who we had met the week before, spoke at Millions Missing and there was strong cross party support for our pledge, including speeches from the Health spokespersons from the Conservatives, Labour and Lib Dems.  Finally, Edinburgh Millions Missing had good support from both the ME Association and Action for ME. 
• Some breaking news from Scotland – we heard yesterday from the Conservative MSP, Sue Webber, that she has been successful in getting a Member’s debate on ME on 2nd February.  We have been in communication with Sue and her team over the summer and the debate is based on Sue’s motion that asks the Scottish Parliament to recognise the outcomes and recommendations of the stakeholder report on ME, commissioned by the Scottish Government earlier this year – her motion is available to read here https://www.parliament.scot/chamber-and-committees/votes-and-motions/S6M-06112

2. NICE Guidelines Monitoring:

• Charles Shepherd updated the group on the slow, disappointing and frustrating progress towards widespread compliance with the guidelines, but reported on the following activities:
• Juan Corlett
• Juan has been the driving force behind setting up the new referral service for people with ME/CFS and Long Covid in the Isle of Man:
• https://meassociation.org.uk/2022/10/service-development-pioneer-hired-by-the-me-association/
• He has joined the MEA to steadily take on all the work we are doing in relation to implementation of the new NICE guideline on ME/CFS and the development of new clinical services where none currently exist.
• Juan is going to be advising local groups and local initiatives aimed at making sure that existing referral services are following all the recommendations in the new guideline and providing information and guidance on how to set up a new clinical service
• Contact details:  corlett@meassociation.org.uk
• MEA mail out to GPs
• We have just sent out a package of paper copies of the following MEA information literature to all GP surgeries (approx 8,000) in the UK:
• MEA GUIDE TO EARLY AND ACCURATE DIAGNOSIS
• New and fully updated comprehensive guide to how doctors should be making an early and accurate diagnosis of ME/CFS – including relevant sections from the new NICE guideline
• Free website download:
• https://meassociation.org.uk/2022/05/free-booklet-the-importance-of-early-accurate-diagnosis-in-me-cfs/

•  MEA GUIDE TO THE NEW NICE GUIDELINE ON ME/CFS
  Summary of all the key recommendations relating to Diagnosis, Management, Children with ME/CFS and Severe ME/CFS that are in the new NICE guideline on ME/CFS: Free website download:
  https://meassociation.org.uk/wp-content/uploads/NICE-Clinical-Guideline-on-MECFS-An-MEA-Summary-December-2021.pdf
  
•  MEA GUIDE TO LONG COVID AND ME/CFS
  Guide to the clinical and pathological overlaps between ME/CFS and Long Covid 
  Also explains how we can help people with Long Covid who have ME/CFS like symptoms – debilitating fatigue and post exertional malaise, cognitive dysfunction, orthostatic intolerance, PoTS etc
  Free website download:
  https://meassociation.org.uk/2022/05/new-free-booklet-long-covid-and-me-cfs-are-they-the-same/
• Susan H-A shared her positive experience of hospital ‘Away-Days’ where doctors and nurses are engaged in training and new approaches to medical care. She advocated this approach rather than manuals and booklets due to the burden of reading material.
• Miriam Wood mentioned the ME Training for Professionals that is available:
• http://www.stripylightbulb.com.

3. DHSC

• Our website now posts regular updates to keep members informed.
• Adrian Baldwin advised that whilst progress is slow and bureaucratic, there is impressive engagement and commitment.
• Andrew reported that the full draft from the Task & Finish Group will be ready by Dec 15^th 2022 which, given the groups were only formed in late Spring, is a positive achievement.
• We hope and anticipate that the new Secretary of State for Health & Social Care, Stephen Barclay, will continue to be positive about the current commitment to ME/CFS, and await the policy announcements due in Feb/Mar 2023.

4. Decode ME

• James Mathewson, the newly appointed Head of Corporate and Public Affairs at AfME, stood in for Sonya at the meeting, and provided an update.
• He promised to distribute a timeline for the project and criteria for eligibility to members shortly.

5. Forward-ME’s future role

• Andrew read out this email extract following discussions at the previous meeting:
• Purpose & Role. Forward-ME is a discussion forum where members can share and compare issues to keep updated on matters impacting, and ultimately improving, the quality of life of the M.E. community as a whole.
  90-minute Zoom meetings held every 3 months, using a standardised agenda covering (1) education & awareness; (2) support & care and (3) research. (Additional meetings may be held should the need arise).
• Steering Group. This is to be abandoned so each member has an equal voice.
• Chairing & Facilitation. Rotated every 3 years, (currently myself although I’m due to step down December 2023). Minutes are posted on the FME website.
  Charities, non-profit organisations and relevant individuals, by invitation only, on a complimentary basis, with occasional guest speakers/contributors.
• In addition, Christine requested we continue to collaborate on future campaigns and Andrew confirmed this would be down to a consensus amongst the members.

6. Research

• There was much discussion around research funding and proposals to stimulate applications, although significant progress is being made.
• It was agreed that whilst progress remains slow there is a new willingness around research in M.E. in part due to the abundance of Long Covid.
• Peter White agreed to circulate comparable funding levels in other diseases so that we can build our case going forward.

7. Support & Care

• Our emphasis has historically been on education/awareness and research, with little time or investment in the critical aspects of support and care.
• The group felt this was due to the extremely personal and painful experience of carers enduring the stress, concern and sadness of supporting family members over many years.
• Whilst the charities publish guides and information much more needs to be done.
• Charles recommended we consider producing a film on this issue, which was widely supported, and he agreed to approach Natalie Boulton.

8. AOB

• We’ve received a request from the National Library of Scotland to include our meeting minutes on the UK Web Archive. P White agreed to review this and respond to them.
• Christine raised the issue of the concerns being raised again by local ME groups of correct coding of ME, and said this is something that she has campaigned on for many years, from Read Codes to Snomed, and the difference correct coding identification can make to the patient and to collecting data on ME.  
•  

9. 2023 Meetings:

• Wed 10 – 1130am on…
• Jan 11^th; Apr 12^th; July 12^th; Oct 11th

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