Thread by @Squashedhedgi

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?

2) I hv had correspondence with The MRC “person who is responsible for mecfs” if its the same person. Their attitude &what they offered “look you have a CMRC conference & we gave you some ££ in 2012) =really inappropriate & I’m not content to hv the rest of my life in their hands

3) There is the point that ONE of the reasons there’s all this longcovid research activity which we hope to derive benefits from, is because the funders swiftly pumped in money into that in a way they have refused ME (ditto NIH) & we accepted

4) I hope renewed CMRC activity, if this is what it is, won’t be shrouded in same lack of transparency as the APPG. I feel patients are being more excluded & is that because our views & wishes in a Long Covid world, “#MEtoo” etc = inconvenient & need to be managed more than ever