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

In the Delivery Plan under the header 'Stimulating further research into ME/CFS'

Later in 2025, DHSC, jointly with the NIHR and MRC, will be hosting a research showcase event for post-acute infection conditions research, including ME/CFS and long COVID. This event will:


  • discuss recent evidence in the field, particularly new findings from the DecodeME study, and from long COVID studies which may open new avenues for investigation
  • recognise the importance of research into ME/CFS and long COVID
  • highlight important outstanding research questions
  • spotlight the bespoke support available from NIHR and MRC for researchers in preparing applications

We hope the event will encourage researchers to join the ME/CFS and long COVID field and enable new collaborations across specialties and disciplines to stimulate further vital research.
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Do we know anything about when this is happening & who's involved?
 
Sasha said:
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.
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They could, but I doubt most GPs would read it. The information (or pointers to it) needs to come from sources such as medical colleges, publications, other doctors.

Info from patients is likely to be regarded as the Dr Google medicine that gets thrust at them all the time.
 
“The Plan includes some positive first steps in the right direction, which could lead to improvements over time.”

Jonathan Edwards said:
Mybolding.

That looks like a very firm rubber stamp to me. They actively supported the multidisciplinary community approach.
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I agree that the whole statement is not as strong in its criticism as I would have preferred but I wouldn’t describe it as a rubber stamp. Their statement is similar Sonya’s statement quoted in the Times, and I think we agree that Sonya understands the issues and is doing a good job, even if we have concerns about part of what she was quoted as having said.
 
MrMagoo said:
Who is up for doing FOIs?
FOI who wrote the delivery plan
FOI the training material
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I don't see that as yielding anything we don't already know.

The delivery plan followed the standard production process for such things - the relevant civil service dept - in our case an ever shrinking chronic conditions team in the DHSC - wrote the plan after lots of (oft ignored) input from nominated charities, researchers, PwME, clinicians. Then it went through a painfully long internal government departmental sign off process.

The training material is widely known to written by David Strain, again with (oft ignored) patient input.

Both claim to be co-production but were not in reality true co-production exercises, nor arguably could they be, it was always the governments plan, not the communities.

The result was inevitably a very disappointing fudge, but it would have been even more feeble than it was without the strong charity advocacy that happened, particularly in the closing stages.
 
Sasha said:
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 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
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Jonathan Edwards said:
Not really.
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There is the MEA purple book but what, if any, it's reputation is among the colleges that control med Ed I have no idea. It's very conservative as you'd expect.
 
ThereForME's statement yesterday. It's not an endorsement rather a tepid acknowledgement of a disappointing delivery plan statement..
I think we should aim to work with groups like #ThereForMe, who present well on the media, have engaged with the Parliamentary process and share their lived experience as well as providing a weekly statement, some of which have pinpointed aspects of the ME experience that are rarely covered, for example the failure in language to describe ME. They are a useful ally.

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Sean said:
Also agree that most patients do not need any specific 'treatment' or management advice, beyond a few basics. Sort of thing that could easily fit on a page or two, and which mostly involves medicine admitting that they have no explanations and treatments to offer.

Problem for medicine, of course, then becomes having to face some very awkward questions about WTF have they been doing for the last 50 years on this matter? In particular, how did they manage to make a very bad situation even worse?
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Basic accountability based on results? Can't see that happening.

And while this line would normally be a fine joke, it's just a fact. This is all about the most basic accountability that every other profession has to face: based on results, on what has been delivered, on whether it made a positive change. And the simple fact is that this simply does not exist in health care, because the lack of results is not considered failure, being locked in a permanent state of worsening also isn't.

They judge themselves based on intentions, and no one else can judge them, they have no oversight of any kind. Even though here the intentions are completely wrong, all about promoting their pseudoscience and doing all the wrong things, making every wrong decision along the way. So not even that. Even based on intentions everything that has been done about us, except the parts that we made happen, the whole thing has been completely disastrous. But on results, they are the literal worst case. No other group of professionals has ever failed this miserably in the history of our species, and by a wide margin.

There is simply no process to allow for that. The profession obviously can't hold itself accountable, self-accountability is not a thing. They seem to take very little pride in their work, no one with an ounce of it would be fine with the disaster we are seeing here. And there exists no institution or system that even attempts to do this, medicine is essentially sovereign and made of entirely independent kingdoms. Everything is local, judged locally, at a level where no one can actually do anything, and is also entirely devoid of even the most basic idea of leadership. There literally is no such thing as leadership here, it's all a chaotic mess where everyone is wrong but no one is responsible.
 
Robert 1973 said:
I think we agree that Sonya understands the issues and is doing a good job
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I agree that Sonya is doing a brilliant job in the areas she is good at.

Whether she understands the issues about care delivery I do not know. She has commented that there is negativity amongst patients. I suspect that is negativity in terms of attitude to providing services. I may be wrong, but my impression has been that both Charles and Sonya have broadly supported trying to increase service provision on a multidisciplinary basis without asking the crucial question as to whether this does more harm than good.

This crosses over to the educational material where we get all sorts of half baked ideas about complex multi-system disease thrown in. If you provide modules for doctors saying this they will glaze over and say "yeah sort of - sort of psychological then". If you provide modules saying that it is a distinct syndrome about which we know almost nothing and for which there are no known useful treatments, despite the fact that it can produce a very high level of disability then the doctors might stop and think.

The point is that all these people, by saying, yes thanks, nice as far as it goes, are providing a green light for a train going over a precipice. (Actually, it has already dropped most of the way but there was some hope of retrieval.) The 'Plan' has been shoehorned into the governments highly dangerous and counterproductive 10 year plan for destroying specialist care. Sorry, but this is rubber stamping.
 
Adrian said:
We could collect negative comments from GPs here and else where and send them to the team in the DHSC responsible for long term conditions and this plan. To show the issues and the work that needs to be done
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Along with a few comments from elsewhere, to show how this is not a few bad apples, but a whole bunch that is itself the source of spoiling. We have a few threads with those. They leave no room for interpretation, and even being restrictive, such as comments from previous articles in Pulse, or any other professional publication, would make it clear how systemic the problem is, how if they feel comfortable saying such things among themselves, imagine how much worse the things they say in private are.

Those are not private comments on alternative Facebook pages, where someone is hiding an extreme bigotry where they know they'd be in trouble if it was found out. They say those things out loud, revealing the real reasons why nothing has been done so far, how no system that views the people it is supposed to serve this way can ever even dream of being useful. There needs to be a complete cultural shift here, before anything happens, because otherwise everything gets corrupted by it. This fake delivery plan that isn't even a plan and will deliver nothing is just the latest example in a perfect, and I mean absolutely perfect, streak of total, miserable failure.
 
Kiristar said:
I don't see that as yielding anything we don't already know.
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I would like to know whether or not there were any competent physicians advising?
I would like to know the job description of any civil servant dictating medical policy in the wrong direction.

The procedure might seem standard but to me something very new is happening. The model for delivery of care for a specific disease is being dictated by people who understand nothing about it. Yes, the whole government 10 year plan is going to be like that but most of the rest of it has not got started yet. ME/CFS seems to be the guinea pig.
Kiristar said:
The result was inevitably a very disappointing fudge, but it would have been even more feeble than it was without the strong charity advocacy that happened, particularly in the closing stages.
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I find it very hard to see how this is a 'disappointing fudge'. It is a complete disaster. It looks like providing care and yet we know it won't be providing care. Nobody wants a team of physios and psychologists in a neighbourhood centre who have no idea what they are doing. We now know that the service model the department will apply is 'BACME Therapy', which is just GET without the G.
 
Utsikt said:
Even when they try to play politics, they fail at it. Nobody in the opposition would praise a plan like this.
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Whatever politics they are trying, and failing to play, it is at best controlled opposition. It's borderline sycophantic, even, and it disgusts me to see it.

No one should have praised this mockery of a plan, it is only deserving of strong and furious condemnation. This is not about a group of ten year-olds preparing something for mommy's birthday, they are professionals who should be judged based on results and the results they have delivered so far have been completely disastrous, and this sham plan is nothing but a continuation of the same total failure.
 
The generally muted response to this has been surprising. No comment at all from the actual health secretary (Streeting). No comment from any medical quarter except for some brief coverage on the online GP magazine PulseToday - not even a BMJ news article as there was for NICE, Maeve's inquest, etc. I didn't really expect a comment from any of the RCs but silence there too, even though they were involved in the process. No comment from BACME or any of the other non-patient groups apparently involved.

One of the problems I can see with publishing in Qeios is that it isn't indexed by PubMed, WoS, EMBASE or Scopus so publications there may not even come up in literature searches.

The MEA Purple Book isn't really "conservative" in the sense that it too often gives credence to junk research.
 
Kiristar said:
There is the MEA purple book but what, if any, it's reputation is among the colleges that control med Ed I have no idea. It's very conservative as you'd expect.
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I think the colleges would regard it is an intriguing curiosity, not to be taken too seriously. A few GPs probably found it informative. But the purple book is full of problems. There is no proper critique of the evidence.

A charity could commission a textbook (I don't have much time for 'teaching modules'). I once produced a video on physical examination with some ARC support money. But by and large these things are not taken up. In the old days the ARC produced a thing called 'Reports on Rheumatic Diseases'. I think I was the editor for a while! But things have changed. A better idea might be for us to make progress on the Fact Sheet project and build up the necessary text that way. They might still not be taken up but it would be how we wanted it.
 
Jonathan Edwards said:
A better idea might be for us to make progress on the Fact Sheet project and build up the necessary text that way. They might still not be taken up but it would be how we wanted it.
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Yes, as we found with the first two, our capacity as pwME for producing them with multiple rounds of feedback is very limited. Unless you'd like to lead some... If so, get in touch with a committee member.
 
It seems to me like a lot of people, including the charities, are stuck in a mindset of just asking for «healthcare» or «research» (with good intent). In a sane world, that would be enough specificity. But we don’t live in a sane world.

An example to illustrate my point:

In Norway, patients asked for ME/CFS to be prioritised. They got a «National Competence Service for CFS/ME». An NCS can be described like this (auto-translate from a government webpage):
National competence services shall ensure national competence dissemination and competence building within their specified field of expertise to a defined target group in the health service. The purpose is to ensure equal access to the competence building and that the competence is used by the health service throughout the country. A national competence service may either have the function "training" with a duration of up to 5 years or the function "competence building" with a duration of up to 10 years.

National expertise services shall not provide patient treatment.
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On paper, that should be a good thing.

In reality, it got staffed by disciples of Wyller, and they’ve become the authority on ME/CFS in Norway. They are currently in their 13th year (it should be a maximum of 10), and we’re struggling to get them shut down. They have a massive influence on the new Guidelines that are being created, and that you will be required to follow if you work in healthcare (not just encouraged). They are of course tied to OCFN, COFFI, etc. They also massively influenced the welfare authorities.

The Norwegian MEA have tacitly given their approval of the NCS over many years by refusing to ask for them to be shut down, even though 7000 patients signed a petition to the government (~half of all patients). They’ve recently change to a public stance of saying that they should be shut down, but their actions in meetings have shown that they would rather replace it with a new NCS staffed by «biomedical» researchers. Their pivot came too late, because the department that is responsible for the NCS doesn’t want to shut them down/replace them before the new Guidelines are finished.

Unfortunately, this is what it can look like when asking for «something to be done». We inadvertently help the abusers get more power, because the people in charge are ignorant or abusers themselves.

And this is what it looks like when the associations try to play politics to gain an illusion of influence and relevance.

Please learn from the mistakes made in Norway.

(The NMEA were central in creating FUNCAP and they’ve gathered a lot of money for research that has funded e.g. Fluge, Mella, Tronstad and their associates. Credit where credit is due even though I’m critical of some aspects of their work.)

Edited because I got off topic from my own detour..
 
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We only got to the stage where people with no idea about the disease in government are writing a plan for the clinicians is because the NHS could not do this itself. After decades of failure and patient harm we are in one of the oddest positions where medicine is dead set on not accepting anything is wrong with a very large patient group and government has eventually had to act. Its definitely not the way this is meant to happen but it was always headed this way after the 2000s and repeated house of commons debates on the appalling treatment of patients.

The dam on prevention of future deaths orders has been broken, as has the block on putting ME/CFS on the death certificates. This ball is rolling now and they are going to keep coming. Despite this still medicine has been intransigent to the mere possibility it is wrong. This is an experiment on how to potentially force medicine to accept an illness without the biomarker and test they can run, but its just gone horribly wrong because you can't trust politicians and you certainly can't trust BACME and the DHSC. The truth is we need extensive control over the entire thing because the nuance matters and they just chose not to listen and expect us to be grateful for getting it wrong.

Our entire review process is correcting people who have no idea they are wrong and getting ignored.
 
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