Minutes of the Members Meeting held on Wed July 14 2021

Action points shown in blue.

Italicised items arose post meeting.

Apologies: Stephen Holgate, Sonya Chowdhury and Russell Fleming

1. May Member’s meeting – update

• NICE revised guideline due 18^th August will be pre circulated to those involved 7 days in advance. MM to co-ordinate a united response from forward-ME membership ensuring a consistent message across our community.
• DecodeME –Sam Bromiley will send details of a webinar scheduled for Fri 23rd July and reported that 29,000 have committed to date, so currently on track for the Sept launch.
• ’21 Goals & Objectives – making good progress with no material slippage at present.
• CMRC – Dr David Strain is succeeding S Holgate as Chair so our two organisations will not come together and the PAG will remain with CMRC. However, we would like to retain Nina on the Steering Group if possible.

2. June Steering Group meeting – update

• Executive Team Leaders have been agreed for each of our 3 areas of activity.
• NB Medical and Red Whale have not yet been contacted and are to be followed up by ABM.
• Spring Conference sub-committee has not been progressed due to other priorities but we will review the appetite for this early Autumn.

3. New Members

• Andrew welcomed the following new members who each summarised their organisation and will provide details for inclusion on the new website.
• Richard Ramyar of Doctors with ME, who will be forwarding their mission and vision statements.
• Denise Spreag of #MEAction UK.
• Mark Morgan (standing in for Miriam Wood) of MESIG.

4. Long Covid & ME

• We’re finding it challenging securing a meeting with Layla Moran MP who leads the Long Covid APPG. Carol Monaghan agreed to speak with her in the Commons after the summer recess in Sept.
• Whilst the Long Covid lobby appear reticent about collaborating with ME after much debate we see significant mutual benefit so will endeavour to forge connections with them in the coming months.

5. FAQ’s

• There have been many contributions from members on the draft that was recently circulated which is aimed as a basic introduction to the disease primarily for the media.
• Christine Harrison felt there should be a more detailed document, and re-ordering within sections, as already fed back, and highlighted the risk of co-morbidities and fatalities for long-term patients.
• He kindly agreed to complete the current document, taking into account the various comments, which is greatly appreciated.

6. AOB

• Janice Kent raised her concerns about poor ME services within the NHS and Nina agreed to assist with this. Clearly, the addition of Dr with ME should aid our efforts in this direction.
• Having rejected the proposed designs the simpler version of the new website is ready to go live once the SG signs it off.

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