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

[Sasha]

What's striking me about all these public comments from the ME organisations is that they all start off with saying nice things ('We're pleased to see it released! What a lovely first step!' etc.) rather than going for the jugular ('We're horrified to see the release of this appalling plan.'). I can't imagine those Post Office campaigners sending out comms like that (though maybe they did, who knows).

 

[Utsikt]

What's striking me about all these public comments from the ME organisations is that they all start off with saying nice things ('We're pleased to see it released! What a lovely first step!' etc.) rather than going for the jugular ('We're horrified to see the release of this appalling plan.'). I can't imagine those Post Office campaigners sending out comms like that (though maybe they did, who knows).

Even when they try to play politics, they fail at it. Nobody in the opposition would praise a plan like this.

 

[Kitty]

But why would Versus Arthritis help ME patients though? Surely hey will have their own charity mission that will obligate them to restrict spending donor funds on Arthritis?

Their work covers a lot more than what people would think of as arthritis. The term encompasses so much it's nearly meaningless.

 

[Kitty]

I doubt any of the government ministers involved have a clue about ME/CFS.

Nope. They rely on expert advice, but have no way of knowing who is an expert.

So they go for people who say they're experts, who have a profile among other people who say they're experts.

 

[Binkie4]

Because the government is ashamed of it. They are giving every indication that they want it to quietly disappear down a deep dark hole, as fast as possible.

Suggests strongly that they know it is a massive fudge and failure, and that any name associated with it will be covered in merde.

My question is did the government go into this with honourable intentions, but ran smack bang into the ferocious implacable resistance and pressure tactics from the psychosomatic gang and allies, and just gave up fighting for it?

I don't think we are ever going to make real progress until the festering mess that is underneath everything that happens in ME is exploded into the light of day, a cleansing of the Augean stables.

Nothing makes sense in ME unless you know about this. Until this happens everything that is done will be distorted, sabotaged, inadequately resourced and so on.

 

[Jonathan Edwards]

I agree their campaign is a good model. But why would Versus Arthritis help ME patients though? Surely hey will have their own charity mission that will obligate them to restrict spending donor funds on Arthritis?

ME/CFS is well within the scope of Versus Arthritis. It is in essence a rheumatology charity and rheumatology has taken an interest in chronic pain and 'fatigue'. The reason ME/CFS has not had funds from them is the absence of any leads. If genetics pointed to immunology there would be no problem.

The trouble is that the MRC is a closed shop, has been disengaged and actively resistant throughout the Delivery plan process and even lobbying senior figures has not (yet) managed a breakthrough.

I don't think that is quite so. DecodeME had MRC funding even before the plan and we now have the PRIME funding despite the plan producing nothing else. MRC has had its problems but once you have had funding you are in the club.

I still kind of feel we need a nucleus of a biomedically oriented clinical body that could accelerate the shifting of opinion and that could start to replace BACMEs position and serve the new specification service centre sites and develop their role in research. There must be a lot of LC affected clinicians with an interest now?

I don't see anyone likely to be of help. Doctors with ME have put out quite a lot of unhelpful material. And they aren't practicing ME/CFS medics - basically there aren't any. Even Luis Nacul is in Canada. To be frank, I begin to wonder if anyone except me has any grasp of the nature of what is needed. And I am long past doing any clinics.

 

[MrMagoo]

Who is up for doing FOIs?
FOI who wrote the delivery plan
FOI the training material

 

[Chestnut tree]

Why is it that we have no names at all attached to this document?
Why isn't this a 'Lord so and so's report'.

I find it mind-boggling that it seems they have managed together a group of people NONE of who were prepared to say "NO,NO,NO,NO, things have got so entrenched in bad practice that we have to have a physician-led hospital based service both for mild/moderate and severe/VS with domiciliary services, specialist nurse practitioners and hospital facilities for care of feeding problems. We have to reverse the British Society for Gastroenterology policy for deliberately not feeding people with ME/CFS ... and so on. Why was there not a single person involved who was prepared to say this and make their views public if they were ignored?

This is why I expressed so much reservation over the There For ME campaign. They have rubber stamped the worst of all worlds.

Agree except the part of ‘there for me’ what have they rubber stamped? They specifically campaigned for better care provisions, I thought?

 

[Jonathan Edwards]

Was it all left to a few pwME well enough to participate, some carers, and therapists from BACME, with the final document written by civil servants, or chat-gpt?

People seem to be decidedly mum on this!!

 

[Jonathan Edwards]

Might be worth setting up its own thread to collect good LC research and clinics etc.

There aren't any that I am aware of.

 

[Sasha]

I don't see anyone likely to be of help. Doctors with ME have put out quite a lot of unhelpful material. And they aren't practicing ME/CFS medics - basically there aren't any. Even Luis Nacul is in Canada. To be frank, I begin to wonder if anyone except me has any grasp of the nature of what is needed. And I am long past doing any clinics.

Would you consider guiding and providing training modules or something? Were you still thinking about writing a book? There's such a vacuum here.

 

[Jonathan Edwards]

The Plan includes some positive first steps in the right direction, which could lead to improvements over time.

Mybolding.

That looks like a very firm rubber stamp to me. They actively supported the multidisciplinary community approach.

 

[Robert 1973]

Because the government is ashamed of it. They are giving every indication that they want it to quietly disappear down a deep dark hole, as fast as possible.

I think it's probably more a case of indifference.

Long Covid Advocacy on BlueSky:

“What is striking in the release of The ME Delivery Plan, is the strategic silence of @rthonwesstreeting.bsky.social​

- no comment​

- no mention​

- no press​

- not even a tweet or RT​

Yet, it's under his watch, this echo in the void tells us much about the NHS's priority for ME.​

We have noticed Wes.”​

I don’t know if it’s indifference or an active desire to try to make it disappear but the silence of Streeting, along with all the other issues [raised] in this thread, is significant – particularly as it was launched by Javid when he was Health Secretary.

The more I’ve thought about this Plan the more disappointed I feel. I am wondering if I will ever see an NHS ME/CFS consultant again. This plan would appear to have reduced the probability of that happening.

 

[Sasha]

Mybolding.

That looks like a very firm rubber stamp to me. They actively supported the multidisciplinary community approach.

Does there need to be some sort of statement/explanation issued about what we need, and why it isn't this, that we could then ask charities and organisations such as There for ME to get behind? None of this stuff will be obvious to most PwME, who are very vulnerable to being talked into things by people who know the systems.

 

[Jonathan Edwards]

Would you consider guiding and providing training modules or something?

I am very happy to contribute to designing modules and writing chapters for textbooks but somebody needs to commission me to do it.

I am not sure about writing a popular book. I think the priority is to get information out in a more formal form and I think a series of Qeios papers may be the best way to do that.

 

[Jonathan Edwards]

Does there need to be some sort of statement/explanation issued about what we need

I think I put it in my first two Qeios article.

I have pointed out to There For ME the problems of their approach. They showed no interest in listening to anything

 

[Chestnut tree]

Mybolding.

That looks like a very firm rubber stamp to me. They actively supported the multidisciplinary community approach.

This was Karen Hargraves quote on radio 4 WATO on the Delivery Plan: ‘I honestly just did not realise that it was possible, in the UK in 2025, to be as sick as my husband is & for there to be basically no specialist NHS services to provide any kind of support’

Another interview with Karen Hargrave on BBC The World at One talking about her husband, James with severe #MECFS and the new government delivery plan which lacks any concrete tangible solutions,

Does not sound like rubber stamping to me.

 

[Jonathan Edwards]

Does not sound like rubber stamping to me.

I don't know the context of those comments but the statement I was referring to before is very clear. They think the government is on the right track, just not going far enough. They do not appear to have the faintest idea that the government is wrecking any last chance there might have been of anything useful. What we will get is 'multidiscipinary teams' of half-qualified therapists 'in the neighbourhood' whatever that means who have no understanding of ME/CFS. The intention is absolutely not to provide specialist care. If Hargreaves has suddenly realised that then maybe the statements on the website need changing? I actually doubt she has realised anything of the sort.

 

[Sly Saint]

Article in Independent: Woman’s death exposes need for ME care reforms

• The UK government has pledged to overhaul care for individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), acknowledging that many currently struggle to access appropriate support.
• This commitment follows the death of 27-year-old Maeve Boothby-O’Neill, who died from severe malnutrition due to ME, prompting a coroner to highlight systemic issues.
• The inquest into Miss Boothby-O’Neill's death revealed a critical lack of specialist beds, “extremely limited” training for doctors, and insufficient funding for ME/CFS research and treatment.
• The Department of Health and Social Care (DHSC) is set to publish a new plan outlining steps to improve patient care, including new training for NHS staff and investment in research.
• While public health minister Ashley Dalton welcomed the plan, the charity Action for ME criticised it for not going “far enough,” advocating for a dedicated, funded research hub to find treatments and cures.

ME care reforms promised after woman’s tragic death

A coroner highlighted a lack of specialist beds and ‘extremely limited’ training for doctors around treatment of the condition

www.independent.co.uk

 

[Sasha]

I am very happy to contribute to designing modules and writing chapters for textbooks but somebody needs to commission me to do it.

Do charities have anything to do with commissioning nodules and textbooks for things like this, in well-established areas? Versus Arthritis, for instance? If so, could they be persuaded of the need for this?

I am not sure about writing a popular book. I think the priority is to get information out in a more formal form and I think a series of Qeios papers may be the best way to do that.

I assume there's no ME/CFS textbook, so rather than writing a chapter for a more general book, do we really need a short one dedicated to ME/CFS? Fifty pages or something? Or yes, maybe a series of Qeios papers but if they were put together in a book, PwME would find the info and could take it to their doctors.