APPGs on Myalgic Encephalomyelitis – Where are the minutes?


This will be a lazy blog post as I am ‘depleted’ of energy…or at least, I have just about enough left to type this up briefly!

Watch this video


Read these links –

Guide to the rules on APPGs

Myalgic Encephalomyelitis APPG

Register of All Party Parliamentary Groups – M.E

After reading and watching those links you are now up to speed with where I was at when I emailed the Office of the Parliamentary Commissioner for Standards with this email:

It is my understanding that minutes of APPG meetings must be minuted and published on stakeholders websites for transparency.
No minutes relating to the APPG on Myalgic Encephalomyelitis have been published in either 2020 or 2021.
Meeting held – 17th March 2020 – a summary was made available.
No information has been made public re. the meetings held on:
29th April 2020
16th June 2020
7th October 2020
17th November 2020
AGM – 19th April 2021
I queried the absence of minutes last summer and was advised this was due to a ‘backlog’ in Parliament due to Covid19. However, it is now 18 months since the first of the APPG meetings in 2020, I am surprised they have still not been made available given that 2020/21 was an important year for the UK ME/CFS patient community with the NICE guidelines review.
I would be grateful if this matter could be looked into and resolved.
Best wishes.
As a patient, I am cross because I spent valuable energy in 2020, when I was really poorly with early stages of Long Covid ON TOP OF my pre-existing M.E, emailing my MP (both Portsmouth MPs have engaged with my M.E advocacy) and asking them both to attend all of the meetings listed above. After each meeting, I have been unable to establish if either MP attended, even those that were held virtually. I am cross that our help was requested ‘URGENTLY’ to get MP ‘bums on seats’ but we are being excluded from knowing the outcome of these meetings.
Depending on the outcome of this APPG ‘missing minutes’ issue, I may not bother to waste my energy in future.
As I said in the video above, 2020-21 was a huge year for our community due to the political implications of the NICE review. So, I am staggered that patients are having to chase to see what has been said during these meetings.

‘Nihil de nobis, sine nobis’ (Nothing about us without us)

I’ll write an update when I receive a reply from the Office of the Parliamentary Commissioner for Standards (OPCS). I have sent so many emails and letters over recent months and I am still waiting for replies 2-3 months later. The autoreply I received from the OPCS said to expect a reply within 5 working days. We shall see!

Love Sally

and Foggy (OBVIOUSLY)