MINUTES OF A MEETING OF THE FORWARD-ME STEERING GROUP
HELD ON WED APRIL 13th 2022
- New Steering Group Members:
- Nina Muirhead has stepped down and Opal Webster-Philp attended this part of the meeting in order to recommend we consider seeking a replacement who can continue to provide professional medical input.
- Sonya Chowdury has stepped down and is replaced by Helen Winning, heading up support and care.
- Denise Spreag of #MEActionUK has joined the Group heading up campaigning.
- Peter White has now formally joined the Group, heading up communications.
- Catherine Frazer will be invited to attend future meetings as an observer in order to maintain our political connections and influence.
- Previous Meeting Actions:
- Images for PR use – Peter to follow up.
- Millions Missing. Denise advised that details on the virtual event on 12th May are now appearing online and a date for the live September event will be announced in due course. This is likely to be focused on Parliament Square and may be held alongside a separate CMRC conference. The theme is post viral disease signified by a red thread.
- NICE Guidelines Service Spec. This is a significant document being progressed by Bill Kent.
- NICE Grip Statement. Heather Stephens had previously advised this was due by 30th March but it still awaited.
- APPG Report. Charles advised publication is due to be launched on May 25th at 1530 at Portcullis House, Westminster.
- Members Newsletter – Peter to distribute by the end of April.
- Positive discussions with Dr Jenny Wenman, Claire Stewart and Wendy Lippman have taken place.
- This is primarily an engagement exercise and they were unable to provide dates on publication of their findings and conclusions.
- In summary we are seeking (1) A National Strategy (2) Detailed Proposals/Plans (3) Programme (4) Budgets, and (5) Senior Leadership, addressing the short, medium and long-term approach to research, support/care and advocacy/education.
- We specifically requested regional ‘centres of excellence’ where PWME can receive expert, specialised support and advice from a multi-disciplinary team. We pointed them towards Suffolk, Essex and the Isle of Man as potential examples of this.
- We also requested that their project refers solely to ‘ME’ and not ‘CFS.’
- Comparable Funding Research:
- Peter issued a paper on his recent research into funding compared to other charities supporting western chronic diseases.
- This clearly illustrated how radically under-funded we are based on expenditure per person, such as..
- Multiple Sclerosis @ £311 per person
- Parkinsons Disease @ 300
- Cystic Fibrosis @ £1,500
- ME @ £10 !
- Further studies are to be carried out and we will then submit the findings to the boards of our main charities to open up further strategic discussions.
- Denise was concerned about the outdated advice from BACME which we’re seeking to address.
- She also suggested that we open up discussions with The Royal Colleges in an effort to overturn their intransigence and change their attitude towards ME. Charles offered to write to Prof Martin Marshall to start this process.
- Next Meetings:
- Members Meeting 10am Wed May 11th
- SG Meeting 10am Wed June 15th