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 –
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:
Hello,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 202016th June 20207th October 202017th November 2020AGM – 19th April 2021I 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.
‘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!
and Foggy (OBVIOUSLY)