MINUTES OF A MEETING OF FORWARD-ME STEERING GROUP HELD ON WED AUG 11th 2021

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

1. Minutes: The meeting minutes dated 16^th June 2021 were approved and previously posted to our website.
2. Actions/updates:

• The governance document was approved and is on our website.
• The ‘go-to’ list was issued for internal use only.
• It was agreed that the PAG are to be invited to join as members, and NM will serve on the Steering Group with a focus on education.
• Meetings with the Welsh group were held and future membership discussed.
• A partnership with NB Medical and Red Whale is to be followed up by AM.
• The sub-committee for the planned Spring ’22 conference will meet early Autumn and report back.
• Attempts to set up a meeting with Layla Moran MP who heads the Long Covid APPG were unsuccessful but CM is hoping to meet with them in September.
• On Friday 6 August 2021, The DecodeME Partnership announced that the funders (MRC and NIHR) approved a no-cost extension to the study with an additional aim to reveal genetic factors that are shared between, or else distinguish, individuals who were clinically diagnosed with ME/CFS either pre-COVID or post-COVID. The opportunity for this additional aim arose after financial restructuring in the existing study. The study will still continue to recruit 20,000 people clinically diagnosed with ME/CFS, whilst also adding up to 5,000 additional people, also diagnosed with ME/CFS, but only following SARS-CoV-2 infection. As controls, we will use UK Biobank data but also acquire genotypes of 15,000 individuals who have been exposed to SARS-CoV-2 virus.

3. New NICE Guidelines:

• The draft press release was approved with agreed amendments
• FME statement in response was also approved.
• These are being sent to all members for their consent to officially support the statement so we send a unified message of response.
• Both will be posted on our website on August 18^th.
• Medium White’s proposal to assist with our media communications was approved in principle and AM is to actively progress.
• RF suggested that following the announcements we spend time considering implementation and arrange a workshop so this can be the focus of the forthcoming Sept members meeting.

4. Finance Report:

• Donations of £5,000 from The Wellside Trust and £5,000 for the Morris Charitable Trust have been received, held and administered by AfME in accordance with the previously agreed governance doc.
• Costs of £2,076 for the new website have been incurred to date, to include management and maintenance for the next 12 months.

5. Membership Structure:

• The proposal from Simon Lawrence to add smaller, regional organisations and individuals as ‘associated members’ was seen as positive, although managing far larger numbers is not possible at present. This is to be reviewed as we develop our infrastructure.
• The SG supported the idea of introducing a formal membership agreement with appropriate fees and this is to be announced at the Nov members meeting and to take affect from Jan ’22. The SG will now review and finalise the draft agreement.

6. AOB:

• Future meetings may focus on a specific aspect of our mandate, led by the ‘heads’ of each area of activity. AM will propose the themes in advance of each session.
• Prof S Holgate has decided to step down from the SG and is being replaced by Charles Shepherd

7. Next meetings:

• Wed Oct 13^th 10am
• Wed Dec 15^th 10am

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