stronger together

stronger together

Minutes of the Members Meeting held on Wed 9th March 2022

Present

Gemma Hoyes (CMRC PAG)
Peter White (F-ME)
Nina Muirhead (Docs with ME)
Bill Kent (ReMEmber)
Andrew Morris (F-ME)
Denise Spreag (#MEActionUK)
Sue Waddle (ME-Research UK)
Christine Harrison (BRAME)
Baroness Scott of Needham Market
Tony Crouch (25% ME Group)
Louise Beaton; Charles Shepherd (ME Association)
Jonathan Davies (ME Research UK)
Simon Chandlers;
Simon Everitt (CMRC/PAG)
Liam Ryan (Action for ME)
Miriam Wood (MESiG)
Suzie Henson-Amphlett  (Tymes Trust)

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  1. Agenda

There was no published agenda for this meeting but in future members requested this is distributed in advance.

  1. #Millions Missing

Denise outlined the plans for this year which includes a virtual event on May 12th (ME Day) and a live event in September (date to be advised). She expected the May 12th 2023 event to be back to pre-pandemic strength, and Andrew reiterated the support from FME to add further support to these campaigns. The event will continue to have a political slant and Denise advised that although the US sets the key messages and objectives the UK will be able to tailor these if appropriate. A survey will be organised by #MEActionUK to help guide the shaping of the event.

  1. NICE GRIP Statement

Simon Chandlers summarised discussions to date with Heather Stephens of NICE. After much discussion it was agreed that the Statement, which is due Mon 14th Mar, will be distributed by P White to all members for their comments, which need to be forthcoming by Thurs 17th 5pm latest, so that he can collate the responses and forward to Heather for her deadline of Mon 21st Mar. Members are requested to keep their comments concise  and to avoid total redrafts which are unlikely to be observed by NICE. Some members may individually decide not to put their name to the Statement in which case Peter will point this out when forwarding to NICE.

  1. NICE Guideline Service Specification

Nina and Doctors with ME are currently bringing up to date a service specification which was developed, and signed off by 3 CCGs, which Christine Harrison received special permission to share with Doctors with ME. The completed Service Specification will then be brought to Forward ME to see whether they wish to support it and assist in the considerable work involved in the ‘roll-out’ to the medical community.  A summary document has been suggested by Nina to introduce, and link into, the full  service specification – Bill has offered to start work on this.

  1. APPG Report

Charles advised that the report is nearing completion and should be published on or prior to May 12th.

  1. Decode ME

Liam promised to distribute an update for members shortly.

  1. Membership Fees

Andrew once again stressed the need to pay our fees if you haven’t yet done so!

  1. PWME Images

Peter advised that a recent survey produced 1,200 responses over 3 days underlining the importance of updating our library photos for media use. He is working with Getty images, amongst others, and estimates this will cost circa £4,000 to complete.

  1. Steering Group Member

With Margaret Mar’s departure a few months ago we have a vacant seat and the SG have extended an invitation to #MEActionUK to nominate one of their team for this role, in readiness for the next meeting on 13th April at 10am.

  1. Next Meeting

The next full members meeting will take place at 10am on Wed May 11th 2022.

 

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