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
Feb 3 • 4 tweets • 2 min read
1) In 2nd NHS e-module Dr Strain dutifully excuses #mecfs neglect:
"Unfortunately, in the absence of proven treatments, or evidence-based interventions there are significant differences in funding for, & thus the ability to provide adequate ME/CFS services around the country"
2) However, If you have motor neurone. disease, which does not have much in the way of treatments, you don't just get nothing. Below is what google and the nhs say about what care & support MND gets which is vastly superior to UK severe ME care &
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
