Tube-fed, bedbound, a very severe M.E. veteran, wounded on the battlefield. Unlikely to come out of this intact or alive. UK has allowed ME neglect. LW-green
Nov 27, 2021 • 5 tweets • 2 min read
I assume this = the renewed CMRC:
“the person responsible for #MECFS was there. The MRC...want to receive [HQ] research grant applications...One..
purpose.. of the meeting..was to get new research blood into ME/CFS - including those who are now working on Long Covid research”
1) this sounds good until you realise MRC & MEA have been saying exactly this since 2008 (with exception of hoping to latch onto new LC interest)
Surely we can ask for more/expect better when The medical system = failing a large group of very sick ppl & costing state a fortune?
Nov 27, 2021 • 18 tweets • 5 min read
This thread =about #ME charities position on the need for more research & funding. I had a “problematic” discussion with the MEA on this last week, not just bec we disagreed! but their position “seems” afaiu at odds with what many in #pwME want/need or are they right? #mecfs2) An Meruk report a few yrs ago seemed to agree with MPs calling for action as lack of progress, suffering & economic cost was unacceptable meresearch.org.uk/commons-debate…
They said the ministers response to calls in HoC debate for more research “was disappointing in the extreme“
Apr 11, 2021 • 9 tweets • 3 min read
The sadly recently deceased Ian Gibson MP was a great #MECFS champion.
I revisited the recommendations of the famous “Gibson report” of MPs & Lords of 2006. This thread is some of the startling quotes from that, with so much inacted upon, still in urgent need today:
1)
Areas for Further Examination 1. Is this one disease or two – CFS/ME or CFS & authentic ME? Is there a clear distinction or is it a spectrum? Large-scale epidemiological studies ... will help delineate subsets of patients
