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

[Trish]

And there we were four years ago thinking the NICE guideline would make a difference. We've been stitched up yet again. The same therapists doing the same useless stuff and pretending it's NICE compliant, and still no services for people with severe and very severe ME/CFS. I guess we should have understood better that without support and active determination to change for the better from any of the doctors organisations or health service funders, nothing would happen.

 

[Jonathan Edwards]

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.

I broadly agree with what you say later. But surely 'the NHS', in the sense of the medical and associated professions, did have a way to do it itself. Years ago there were specialist physicians with inpatient beds and domiciliary options. The care was limited but we were not in the current absurd situatin. That situation has been brought about by successive governments obsessed with shrinking hospital services because they think it will save money. Posts for physicians with an interest in ME/CFS have all been closed down. With the push for 'productivity' and constant whittling away of time for patient appointments and other resources what physicans might have been interested look for other things to do.

If by 'NHS' you mean the bureaucrats, I see those as having become entirely toadies to the government, paid to do its bidding.

 

[Adrian]

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.

It is worth saying that there was a lot of effort in negotiation with other departments. One thing that made this plan tricky is it crossed so many organizational boundaries (i.e. different ministers and departments),

 

[Cinders66]

Apart from extreme let down, this story is hardly newsworthy.
The fact that the historical context - that the delivery plan was supposed to be the thing that delivered what the 23 years ago 2002 chief medical officers report failed to implement and that this was needed to bring justice & parity for those decades sick & unjustly harmed, waiting that long - has been completely absent from any charity or media response shows terrible weakness in serving our needs. . You wouldn’t think 23 years ago Dr shepherd had similarly welcomed another government report ,hailed as important government recognition, that was actually far more ambitious in recommendations if not commitments & people have languished and died waiting for those recommendations to be implemented. He ends saying in a fawning way “he looks forward to working with the gvt” bla bla - does he really have a mandate &consent from patients for more of the same collab/rep. I want fresh voices, clear standards and demands and People who campaign but those voices should acknowledge more the long-term nature this of the injustice rather than framing this as a good start , we are not in that territory, even if they are with their own personal circumstances.. I saw the MEA express frustration This was the result after their three years of hard work, but it’s much much much more frustrating for these trapped in their beds for decades.

 

[Adrian]

I would be very interested in knowing what input was given by BPS crowd and what led to the endless delays? #FOI

I don't think there was much input from the BPS crowd, certainly not in the meetings that I was in - there may have been a few comments. What we don't know is what behind the scenes lobbying happened,

From my perspective those writing the plan get the issues and that people have been mistreaded. The plan was associated with no budget hence actions reflect this. I blame Javid for that - he set up an unfunded process as he didn't believe in government spending money - he believes in small government. Then future ministers had no money.

I think there have been a variety of reasons for the delays. Change in government, change in ministers. Issues crossing organizational boundaries. A desire to publish after the NHS 10 year plan etc.

 

[Cinders66]

I don't think there was much input from the BPS crowd, certainly not in the meetings that I was in - there may have been a few comments. What we don't know is what behind the scenes lobbying happened,

From my perspective those writing the plan get the issues and that people have been mistreaded. The plan was associated with no budget hence actions reflect this. I blame Javid for that - he set up an unfunded process as he didn't believe in government spending money - he believes in small government. Then future ministers had no money.

I think there have been a variety of reasons for the delays. Change in government, change in ministers. Issues crossing organizational boundaries. A desire to publish after the NHS 10 year plan etc.

Sajid Javid personally intervened to give long covid an extra £20m RFF . He could have done the same at the that same time for us. He's now saying that there should have been ring fence funding. How many were actually calling for significant RFF and were the blocks to that coming from the government purse strings , or the medical funder side?

 

[Chestnut tree]

I don't think there was much input from the BPS crowd, certainly not in the meetings that I was in - there may have been a few comments. What we don't know is what behind the scenes lobbying happened,

From my perspective those writing the plan get the issues and that people have been mistreaded. The plan was associated with no budget hence actions reflect this. I blame Javid for that - he set up an unfunded process as he didn't believe in government spending money - he believes in small government. Then future ministers had no money.

I think there have been a variety of reasons for the delays. Change in government, change in ministers. Issues crossing organizational boundaries. A desire to publish after the NHS 10 year plan etc.

That is so strange to me. He cared enough to get the process rolling for better care. Without funding any plan would be useless.

As a financial man he would know that.

 

[Adrian]

And there we were four years ago thinking the NICE guideline would make a difference. We've been stitched up yet again. The same therapists doing the same useless stuff and pretending it's NICE compliant, and still no services for people with severe and very severe ME/CFS. I guess we should have understood better that without support and active determination to change for the better from any of the doctors organisations or health service funders, nothing would happen.

In the end change comes when there is a political will. One thing I noticed was how much the civil servants react to the minister and government policies. If we want real change that will only happen when driven by senior politicians who demand things. If you look at where research money has been directed to particular areas it has happened due to political pressure when a minister pushes.

 

[Adrian]

Sajid Javid personally intervened to give long covid an extra £20m RFF . He could have done the same at the that same time for us. He's now saying that there should have been ring fence funding. How many were actually calling for significant RFF and were the blocks to that coming from the government purse strings , or the medical funder side?

The MRC say they don't do ring fenced funding but they do seem to have politically driven initiatives. Personally for research I think more needs to be done than ring fenced funding as that has failed in the past to grow research capacity.

 

[Sasha]

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.

I agree - we here can't collectively work fast enough to meet the urgent need for quality info.

 

[MrMagoo]

A bit, but I am not in a position to say more.
This has nothing to do with the delivery plan as far as I know. It is designed around the DecodeME results.

Basically the delivery plan missed its own boat and pretended it was taking the next one.

For the wording and for the situation

 

[Hutan]

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.

I don't think it would matter where Luis Nacul is, he is not suitable to lead a specialist service. He has been running an ME/CFS clinic for years, and it platforms all sorts of woo. Did you see that latest report assessing outcomes for the clinic Jonathan? Link here.

I don't know where we can find doctors who both get it and have the energy to lead a service. I've been repeatedly disappointed, thinking people understood things and then finding that they are way off the mark.

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.

Jonathan wrote a useful brief document on what medical professionals need to know about ME/CFS, for a report to a charity (one not in the UK). I think we could polish that up as a Forum Fact Sheet. Jonathan has said he'd be ok with that. Something to move higher up on the 'to do' list.

 

[Jonathan Edwards]

brief document on what medical professionals need to know about ME/CFS

I am more than happy to revisit this. I cannot remember a thing about it, as always seems to be the case these days with me, but I will remember everything when I see it!

 

[wigglethemouse]

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?

Versus Arthritis funds fibromyalgia research. Many with ME/CFS could also get / have a FM diagnosis.

 

[Hutan]

On the BACME News thread:

Source: British Association of Clinicians in ME/CFS (BACME) Date: July 22, 2025 URL: https://bacme.info

BACME on DHSC Delivery Plan ---------------------------

The British Association of Clinicians in ME/CFS (BACME) welcomes publication of the DHSC ME/CFS Delivery Plan on 22 July 2025. Provision of care closer to home, improving training for all health and social care staff, expanded NHS ME/CFS specialist services and funded opportunities for research into ME/CFS are much needed. The DHCS ME/CFS Delivery Plan goes some way in outlining these targets. BACME would like to thank people living with ME/CFS, their carers and families, clinicians working in specialist and other services and the researchers who all contributed to the plan.

BACME shares the concerns of the charities working with people living with ME/CFS highlighting that this Delivery Plan does not go far enough. It does not offer sufficient urgency, funding or resources to realise the ambitions of clinicians and researchers working in this medical field.

BACME supports specialist ME/CFS clinicians to deliver high quality clinically effective care. We regularly hear reports from our members about how challenging this is to achieve within the current state of the NHS. There is the added challenge that ME/CFS does not sit within a specific medical discipline so cannot compete for clinical resources and research funding.

BACME supports the need for more ME/CFS medical specialists, nurses and therapists, with increased access to prescribing and capacity to conduct clinical research, alongside continued delivery of existing NHS specialist services. We continue to highlight the need to significantly improve treatment, care and support for children and young people and those who are severely and very severely affected living with ME/CFS.

BACME welcomes all action to improve the care of people living with ME/CFS through increased awareness and understanding of the condition, specific education and training for clinicians working across the NHS, and more opportunities for high quality research. BACME is committed to working alongside people living with ME/CFS, their carers and families, NHS commissioners and Integrated Care Boards, patient charities, researchers, and all committed to deliver the DHSC plan and beyond.

Anna Gregorowski, BACME Chair and BACME Board members past and present who contributed to the development of the DHSC Delivery Plan

 

[Sasha]

I am more than happy to revisit this. I cannot remember a thing about it, as always seems to be the case these days with me, but I will remember everything when I see it!

I just copied it into a new post in the PM thread that you and Hutan and I and some others were on where we were discussing it. It was excellent.

 

[rvallee]

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.

It pretty much says it all, doesn't it? That everyone understands this is not even a concept of plan, hardly worth mentioning.

 

[bobbler]

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



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.

What’s wrong with any of these people who actually hold responsibility
Just finding out what we do need (listening) and then keeping representing that

And there probably are different areas where different expertise is needed and should be listened to and heard within that eg the medical expert on planning this stuff has their warning heeded, those who get marketing/pr heard when making points on nuance and strategy, those who know about how research works listened to in putting together alongside other experts (so it fits into messaging) those issues so that everyone knows the landlines and where we need to be specific (eg not just asking for money that could go anywhere, or a plan that could be anything)

I find it strange vs other illnesses that we don’t have those who have fought for a seat or voice making it clear every day what it is that they represent and are fighting for in specific not ‘better deal for pwme’ terms. That’s politicking us.

After these years people should be bored of hearing these people say ‘need nhs specialists’ (and credit to binita she says it) and so on. There isn’t any cleverness in the game playing of keeping things broad and open.

Then when there is a compromise you are supposed to say that - ‘well it’s not quite the X centres we need, but at least x,y,z’ so people keep knowing.

Their statements on the get people into work stuff have been another issue that have made me doubt them and their understanding of how careful they need to be with what is said. Not just get attention, and they aren’t the only ones who feel getting attention is the name of the game over getting messages right and then heard. It’s a tricky area I understand as we are silenced but I agree we needed to have been working on joining up as a community in getting the ask right and made clear

I’m not sure do government really even think or have heard that what pwme want need isn’t this? I don’t even know what I’d take from this all . No one has ever been clear in saying eg x number of centres run by specialist clinicians that aren’t psych and are joined by biomed researchers.

 

[bobbler]

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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And I think the same needs to be asked of/checked with other charities/players (ie maybe it’s just individuals within them rather than even that assumption that the person who got the seat at the table is taking a position that follows a full discussion of what the position fit those they represent should be) who’ve got themselves a voice

Which is that there surely should be a group of allies who can agree on what we need to be asking for - none of it being extraordinary vs what would be the norm for an equivalent other illness and much of which most laypersons probably assume we actually have and are complying ware there really is nothing (and no medical care for anything else for many pwme due to the bigotry)

If the allies aren’t joined up and clear but those bps who are hostile are then it makes it so unlikely we get something moving the right way.

Have any of these players made what we need clear and started joining up based on ‘the ask’ and who needs to/would be good for what (such as who writes modules). Or has everyone been distracted by this process and giving their own individual answer over the last years rather than working together. And are there significant differences between either these orgs and what they want to ask for ‘in our name’ or what they want to ask for and what we as pwme might actually want?

I actually feel pretty clueless now about what many of them might even think would have been the ideal

 

[bobbler]

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.

This