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

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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.

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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.
 
rvallee said:
Personally I'd rate it about about 5% of an ideal plan
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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.
 
Cinders66 said:
W e have leaders who chose collaboration with an establishment that ill serves us. Use of Chronic Fatigue syndrome helps Them to downplay the seriousness of the illness they are failing.
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Yes. This.

I fundamentally disagree with the placatory approach being taken on this.

We have had:

2002 The chief medical officer's working group report on CFS/M.E.
2006 The “Gibson report” Inquiry into the status of status of CFS / ME and ME and research into causes and treatment treatment
2021 NG206 NICE Guideline
2022 All Party Parliamentary Group (APPG) report; Rethinking ME
2022 The James Lind Alliance: ME/CFS Priority Setting Partnership
2023 The interim delivery plan on ME/CFS -
2024 Maeve Boothby O'Neill: Prevention of Future Deaths Report

None of these were followed up, despite making much the same claims as in this delivery report and recommending urgent biomedical funding.

The DHSC delivery plan and the prevention of Future Deaths (PFD) reports for Maeve contain mostly "suggestions"

The problems are already well known, and the necessary actions well defined, and have been for over 22 years. We have gone from pressing for urgent funding and action to coroner’s reports.

You can't make a silk purse out of sow's ear and we (especially the charities) need to be saying that

This is wholly inadequate and frankly insulting; pwME have been messed about and disrespected for decades. Being polite and playing by the rules has got us nowhere.

I think we need much more strident tone. This Delivery Plan is frustrating, not good enough and doesn't go far enough, fast enough - and that's being polite

The government want people well and back to work but aren't willing to have the hard conversations about what that will take, and the meantime people are being mistreated and dying in hospitals.

Good people gave up a lot of time and very scarce energy in good faith to contribute to this and we are being expected to be diplomatic and be grateful for breadcrumbs and "vision" "aims" and "need to explore further" No, you don't; you need to listen to the people telling you what needs to happen and fund it. Now!

This is my life, my health and my income at stake, diplomacy isn't enough or the right approach when it is so existential.

I don't think I am an unreasonable person, but I am completely and totally burned out from fighting every battle and writing every email and consultation response no one ever reads and we are not making any progress.

I need the charities to say that not" we welcome.." and " good first steps.."

Stop protecting egos and start pointing out the emperor is naked, the elephant in the room, the blindingly flippin' obvious.
 
Well said, @JellyBabyKid. So what do we do now? This forum has no official standing, we're just a bunch of mostly severely affected pwME scattered across the world, crying in the wilderness.

Efforts as a forum are largely ignored, dismissed and achieve nothing. We are creating fact sheets at great effort which a few individuals may be able to use to make some marginal effect on their care. Those of us who put every gram of energy we have into advocacy seem to just get sicker and achieve nothing.

I hear you over your efforts too, and there are countless others of us doing what we can, filling in consultation questionnaires, helping with wording of fact sheets, writing to politicians, going to meetings... the list is endless, and we're all grateful for the efforts, but in my local area, and the UK as a whole, it has all achieved precisely nothing.

And now we are even in disagreement with our charities. But even if they had spoken up saying the plan is simply not good enough, nobody in Government or the NHS would listen.

I still cling to the NICE guideline, but it now seems more like a sputtering candle than a bright beacon of hope. It's clear from BACME's current materials that they have used the bits in NICE that were clearly included to placate the therapists on the panel have enabled them to justify continuing as before with therapist led clinics providing shot term pacing up therapy sessions for mild and moderate new cases, and little else, and pretend they are NICE compliant.
 
Trish said:
Well said, @JellyBabyKid. So what do we do now? This forum has no official standing, we're just a bunch of mostly severely affected pwME scattered across the world, crying in the wilderness.

Efforts as a forum are largely ignored, dismissed and achieve nothing. We are creating fact sheets at great effort which a few individuals may be able to use to make some marginal effect on their care. Those of us who put every gram of energy we have into advocacy seem to just get sicker and achieve nothing.

I hear you over your efforts too, and there are countless others of us doing what we can, filling in consultation questionnaires, helping with wording of fact sheets, writing to politicians, going to meetings... the list is endless, and we're all grateful for the efforts, but in my local area, and the UK as a whole, it has all achieved precisely nothing.

And now we are even in disagreement with our charities. But even if they had spoken up saying the plan is simply not good enough, nobody in Government or the NHS would listen.

I still cling to the NICE guideline, but it now seems more like a sputtering candle than a bright beacon of hope. It's clear from BACME's current materials that they have used the bits in NICE that were clearly included to placate the therapists on the panel have enabled them to justify continuing as before with therapist led clinics providing shot term pacing up therapy sessions for mild and moderate new cases, and little else, and pretend they are NICE compliant.
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Thank you @Trish

I am as stumped as you; we seem to continually be banging out head against a brick wall. We are all taking all the actions we can and yet, still drowning.
 
Not sure if this has been posted:

#ThereForME response to the final Delivey Plan: https://www.thereforme.uk/p/campaign-update-24-responding-to

From the intro:
Last week Karen shared a thread on Twitter/X with some of her initial reflections on the Final Delivery Plan. While we had hoped that the plan might offer people with ME a clear, properly resourced roadmap towards a better future, the reality was that it did not.

In many ways, this was what we’d expected from the moment we heard that the plan wouldn’t be backed by targeted funding. A plan without a budget was always going to be pretty threadbare. Yet, while in many ways this was as expected, it was still a bleak experience watching our low expectations play out in reality.
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