UK Government Delivery Plan for ME/CFS, published 22nd July 2025

[Sasha]

Bedfordshire woman with ME criticises health plan for condition

Maddie Walker says she is "disappointed" with the government's new plan to support ME patients.

www.bbc.co.uk

Well done, that PwME, for speaking out. What she says is in complete contradiction to the others quoted - the MEA, saying it needs to go 'much further' but has 'numerous strengths' and the MP.

 

[Mij]

merged
Woman with ME criticizes health plan for condition

Misdiagnosis

Ms Walker was initially diagnosed with fibromyalgia with fatigue, a condition causing muscular pain all over the body.

As a result of the crossover in symptoms, Ms Walker's ME was not recognised initially, leading her to be recommended treatment that was not tailored to both conditions.

"Something I feel really strongly about is people being given the right information at the point of diagnosis because if I had known what I was doing was harmful, I might not be in this situation."

Ms Walker said she has a "terrible, really poor quality of life" and that "hundreds of thousands of people have once again been let down" by the new delivery plan.

"We just aren't important enough," she said.

​

 

[rvallee]

Not to make a rigorous study out of it, but I'm curious to what degree people here think this plan meets the needs. Maybe a poll would be useful, but I don't think the forum software allows the kind of free range answers we need.

Personally I'd rate it about about 5% of an ideal plan, by which I don't mean something like the response to AIDS, which received billions in funding that goes on to this day, and widespread respect, even fear, but rather as something that is reasonable and commensurate, even ignoring the decades of neglect that warrant overcompensation.

I'd say that something like 40% is about the barest minimum, so a long ways off, while 80% would be acceptable, just less than idea.

It's hard to give this an accurate number, it's a complete wild-ass guesstimate, but gives an idea of where things stand. So a plan that is barely 5% of what is ideal, and I think that 5% is rather generous, is very far from deserving any praise at all.

 

[BrightCandle]

Personally I'd rate it about about 5% of an ideal plan

The potential for the local healthcare provision, which is mostly likely going to be a nurse having done module 1, that has the potential to reduce access to doctors and specialists, it triages us out of the system without fixing anything. Balancing that off against the small progress on research is tough. 5% seems fair but its got the potential to take us backwards too just like the very similar (lack of a) plan did in 2002, I would say its got the potential to be -20%, all depends on the details. It can be used to make things worse.