#ThereForME campaign / Building an NHS that’s there for Long Covid and ME

Afaiu, the protest regarding NIcE was regarding the set up of the panel. This was in a targeted way from #MEAction only, so was unsucccessful in creating change. It’s this set up, or atleast the refusal of a committee this "balanced" to agree recommend physician-led services, consider properly severe ME care etc, which Is seemingly at the heart of some of some of the problems now.

I’m not convinced that what the MEA is calling for is medical services or meets my needs:

“Where a referral service currently exists they must have the staffing and facilities to diagnose and manage ME/CFS that is consistent with all the very clear recommendations in the new NICE guideline on ME/CFS”

& the guideline isn’t that new anymore. The ME association patient survey of 1000 early on, had the majority just seeing it as “a step in the right direction” rather than “good” or something to spend a decade fighting to get set in place for a long time ….

Rather than saying patients should not be calling for funding because what is being asked for behind the scenes isn’t actually the medical care patients want, we should be asking representatives to represent what patients want/ feel they need and we could (probably too late for this specific thing) survey different groups, as well as study what the nhs provides for others, so that this isn’t just assumption but truly reflects the community itself. .

 

Any news on the APPG meeting yesterday? I hope someone tried to push to discover when the delivery plan will be presented since the last mention did not commit that it would be done by the end of March as agreed previously. We need to know what the plans are.