Forward ME Group Steering Group minutes 10th August 2022

About Forward ME

“We exist to present one voice to anyone keen to know more about Myalgic Encephalomyelitis known as ME, sometimes referred to as Chronic Fatigue Syndrome or CFS, representing a number of UK charities and organisations in an alliance that together unites us in a common cause to ease the suffering of patients, and in time, find a cure.”

Forward ME website

Present

Andrew Morris
Clare Ogden
Peter White
Jonathan Davies
Charles Shepherd
Catherine Frazer
Denise Spreag

Apologies: Sonya Chowdhury

1. Actions/updates from previous meetings:
2. NICE Guidelines Monitoring:

• Discussions centred on whether we need to be pro-active or re-active, the latter being the case to date, efficiently led by Charles Shepherd.
• Meetings with the various Royal Colleges, namely Psychiatry, Physicians, Paediatrics and Physiotherapy, are to be pursued although resistance appears to remain strong.
• CS is having regular dialogue with BACME representatives to discuss issues relating to guideline implementation.
• Andrew suggested we publish a list on our websites of all medical establishments and individuals who are ignoring the new guidelines, whether due to administrative inefficiency or as a stance on their attitude and policy.
• We agreed to devote longer discussion time to this, and consider a range of options.
• This issue is to be pursued via the relevant DHSC task groups, particularly via Nina Muirhead on Education & Awareness.

1. Millions Missing (Tues 13^th Sept): Denise said plans were still coming together and her main requests from FME members is to invite their members to attend and share any suggestions of researchers or MP’s who would be interested to speak on the day.
2. Funding & Investment: Our discussions with MEA were not supported by their Trustees but we hope other members may be interested in applying this strategy over time.
3. NICE One Year On:

Catherine advised this has been rescheduled to November and will be organised by the APPG. Information will be circulated in due course.

3. DHSC:

• They have just published a document explaining the brief, objectives, process and structure of the task groups which is being distributed to members.

4. Media Activity:

• There has been little activity recently due to our preoccupation with DHSC matters, although there was an excellent piece on BBC Radio 4’s Inside Science which featured breakthrough research on micro-clotting.
• We are to progress discussions with suitable PR’s providing costs are not prohibitive.

5. AOB:

• Decode ME: The team held a webinar on 3 Aug, which can be viewed on the Decode ME Facebook page and a transcript will also be made available in due course. During the webinar, the team announced the study is ready to fully launch in September. Those who have already registered for updates will be emailed when recruitment opens, and the launch will be widely promoted online and in the press, with an ask to register to take part by signing up here. On Severe ME Day on 8 August, the team highlighted work to include people with severe M.E. in the study, working with the 25% ME group who will be providing expert phone and text support to those who need it to take part. The DecodeME team will contact Forward-ME members in advance to share content they can use to help promote recruitment, and it would be really helpful to know how members might be able to support this? Please let Sonya know.
• ME Genetics Research Summit: This is being held at Edinburgh University on 14^th September, a free event hosted by Action for M.E. and the University of Edinburgh Human Genetics Unit. All are welcome to join in person or remotely. You can see the programme and register here.
• APPG: Catherine advised she’s moving to a new role in early September and the group thanked her for her support and contribution. Her colleague, who will be taking over the parliamentary and ME work, is Ciara Gallagher. She is very enthusiastic about getting involved and will no doubt be an asset to the APPG work.
• GDPR: Jonathan queried our policy and this is to be reviewed to ensure we conform and there are no breaches.

6. Next Meetings: Member’s 10am Wed Sept 21^st; SG 10am Wed Oct 12^th.