Minutes of the Members Meeting held on Wed 13th July 2022

Apologies: Helen Brownlie; Denise Spreag; Baroness Scott of Needham; Sue Waddle; Jonathan Davies; Helen Brownlie; Willy Weir

1. Millions Missing Event:

• Janet confirmed the following dates: London Tues Sept 13^th; Scotland Wed Sept 14^th
• Further details and how to participate will be announced shortly.

2. NICE:

• Service Specification: The updated service specification is making slow progress and we’re awaiting advice from Alexis Johnyns. Christine has agreed to take over the lead on this.
• NICE Guidelines adoption: Charles summarised the unacceptable situation, where many regional medical institutions are blatantly ignoring the updated guidelines. He and MEA have recently been efficiently addressing this but it’s a huge task we’re of the view there any many more organisations and individuals who are acting similarly. Sonya agreed to raise this important issue at a high level with DHSC so the relevant sub-group can put a plan in place.

3. RCPCH/F11:

• Tony advised that to date he’d made no further progress in setting up the proposed sub-group but will now move forward and involve Carol Monaghan if appropriate.

4. Funding & Investment:

• Peter had previously distributed his paper on the impressive achievements of the Parkinson’s Disease charity sector and re-iterated the key findings which shine a light on the comparison with ME fund raising.
• This approach, where membership/databases growth from those directly connected with those affected, drives substantial subscription revenue, alongside legacy income, is available to any of our members. We would be pleased to share details and assist the development of strategic plans to produce a healthier outcome for all.

5. DHSC:

• Feedback: Members sitting on the various sub-groups gave feedback on their experience to date, although most have only currently attended one meeting. We are feeling positive about the level of commitment, engagement and responsiveness from all involved.
• Concern over the Secretary of State’s recent resignation were raised but the department assures us the programme will continue as planned.
• Comms: FME was asked to host meeting minutes and related information on the FME website, which was in hand. However, PAG objected on the grounds that FME is not necessarily seen as being the voice of the whole ME/CFS community and some are not comfortable with FME and feel excluded. Adrian confirmed this view which to some extent has been influenced by social media.
• We now await alternative communications plans which are likely to come direct to those sitting on the groups for onward distribution as appropriate.

6. AOB:

• Charles provided feedback on the recent discussions with Prof Martin Marshall to change attitudes within the RCGP. It was felt that some progress was made but there is more work to do bring them and their colleagues on side.
• APPG Forward Planning: Sonya advised a ‘NICE One-Year On’ round-table in September with a follow-up in January when she will report further.

7. Next Meetings:

• Steering Group 10am Wed Aug 10^th

Members 10am Wed Sept 21^st (changed from 14^th due to clash with Millions Missing)

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