MINUTES OF A MEETING OF THE FORWARD-ME STEERING GROUP

HELD ON WED FEB 9^TH 2022

1. PWME ill since childhood:

• Helen & Natalie were welcomed following their recent emails highlighting the plight of those who have suffered with ME since their youth. As adults those who are severely ill are especially exposed and vulnerable due to diminishing care and support from ageing parents, both in practical and financial terms.
• Natalie’s conservative estimate is that there could 30,000 potentially affected by this situation.
• Helen stressed the preference for home care rather than care homes.
• Natalie offered to approach a person with relevant experience to agree a brief for a report and recommendations, with the costs being shared amongst the key charities and FME.

2. Member’s Meeting Minutes 12^th Jan 2022 – follow-up:

• Images for media: PW to obtain costs from Getty and to explore editing existing video footage to 2-3 minutes for wider use online.
• ME Day 12^th May: Andrew will progress discussions with #MEActionUK to get behind their ‘Millions Missing’ events with a view to organising a major national demonstration in 2023.
• NICE GRIP statement: Finalising the statement is inevitably taking longer than expected and both Nina and Sonya are liaising with Heather Stephens at NICE. The proposed workshops are in contention and more positive patient experiences are required from us.
• Charles advised that MEA are planning a survey amongst CCG’s run by a new appointment.
• PW is to identify clinics who have not updated their websites and write to them accordingly
• SLACK: it was agreed that this app is not proving helpful or being widely used by members and should be discontinued.

3. Long Covid collaboration:

• This remains unsatisfactory and we are to use our political and media connections to push for greater co-operation and sharing of research.

4. Membership communications:

• PW is to distribute the next newsletter mid-February.
• Regularly inviting members to SG meetings to discuss specific issues was supported.

5. Political lobbying:

• With Margaret’s retirement our political influence may have been weakened.
• It was therefore suggested we ask Carole Monaghan whether Catherine Frazer, her Parliamentary Assistant, may join future meeting so we can remain firmly on the ‘radar’ in both Houses of Parliament.

6. Membership Agreement & Fees:

• Several members have still not signed their agreements and paid the fees so Andrew will be speaking to them individually to resolve this.

7. AOB:

• It was generally agreed that since re-joining FME #MEAction UK has made a positive contribution and Andrew will be discussing them nominating one of their team to join the SG.

8. Next Meetings:

• Members 10am Wed Mar 9^th
• SG 10am Wed April 13th

1. NICE GUIDELINES IMPLEMENTATION

• The recent meeting with Heather Stephens (senior team member) at NICE was discussed and their implementation statement will be forwarded shortly in confidence to the SG for our comment by Jan 10th. It’s anticipated this will be published for use by commissioners of services and clinicians by Jan 31^st but this may prove optimistic.
• It’s hoped this will supported by a training package produced by F-ME and endorsed by NICE in the form of a ‘GP Guide’ with a possible follow-up workshop post publication.
• An important refinement in regard to GET, replacing ‘exercise’ with ‘activity management’ was suggested and we hope will be incorporated.
• The meeting was positive and constructive.
• An Implementation sub-committee led by Nina was agreed and she will propose members shortly.

2. BACME

• An initial meeting with Anna Gregorowski (Chair) and Vikki McKeever (Comms) was held to discuss working more closely together.
• They have circa 180 members mostly OT’s and focus on training and education which is our current priority.
• We will report further on progress.

3. 2022 BUDGET

• This is to be drafted by Andrew and circulated for comment.
• There were no recommendations.

4. MEMBERSHIP COMMUNICATIONS

• Peter’s newsletter/review of the year was approved and is to be distributed to members and put on our website.
• This will become the norm from now on and produced every 2 months to coincide with the bi-monthly member meetings.
• Contributions, case studies and interviews with members are most welcome.

5. MEMBERSHIP AGREEMENTS & FEES

• These are gradually being received in advance of the Jan 1^st
• 3 fee waivers were agreed; Physios with ME; PAG; Nigel Speight.

6. ME DAY DEMO

• The idea of a peaceful demonstration on Thurs 12^th May to raise awareness and create an impactful media narrative was discussed, although organising this for 2022 may prove ambitious.
• Andrew to take soundings from #MEActionUK to see if a collaboration with their ‘Millions Missing’ campaign would prove effective.

7. LOOKING BACK

• The annual review is a useful reminder at what has collectively been achieved this year and SG members and contributions from the wider membership were greatly appreciated and acknowledged.
• Andrew proposed that feedback and an annual appraisal of his role as Chair (since April 1^s ) is best practice.
• None was forthcoming, but this may be dealt with individually by SG members, possibly using an existing HR template.

8. AOB

• Meetings are to be monthly for the time being, generally 60-90 mins on the second Wed at 10am, Zoom invitations to follow.
• Charles advised that the APPG on ME report was almost ready for publication and will probably be the subject of the next parliamentary meeting. FME will need to link in with any publicity which the report attracts.  He will check with Carol to see if FME can have an advance copy.

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