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

[Hutan]

I guess I'm not best placed to know what moves the dial with the majority of doctors - that is, those who aren't really following the ME/CFS story and hold some degree of agnosticism. It would be an interesting study to find out something about that.

But I felt that the Medscape article presented the Delivery Plan and commentary on it in a way that was helpful to people with ME/CFS. Medscape is well regarded; I think it has credibility in the medical profession, so, when it publishes helpful content, I think it's worth acknowledging and encouraging.

Yes, for sure, the key is following up on the training materials. I'm constantly appalled at the training materials on ME/CFS, and often they have been prepared by people who are supported by the ME/CFS community or even part of it. I feel rather concerned about who will be preparing the new materials the plan mentions.

I think making sure that the developers are good is an important task of UK advocates. Peter Gladwell and Sarah Tyson must not be allowed near training materials in development. David Strain is not an appropriate person. Sadly, unless Nina Muirhead is taking a different approach to consulting with informed patient advocates, she probably is not either. I'm not sure that anyone at the MEA, even Charles, is appropriate at this time. I agree that the Purple Book put out by the MEA for many years has some odd information - it is not something I would give to a doctor to read.

 

[Utsikt]

Regarding the types of service we need: I like to contrast things to cancer.

Can you imagine someone suggesting to shut down the oncology wards and get GPs to be in charge of the cancer patients? It would be pandemonium.

We need specialists that know what they are doing, and we need specific training for the people that are going to assist at home. We also need clear briefs to any government employee that are going to assess applications for any kind of benefits, aids, etc. so that they understand that the disability caused by ME/CFS is real.

 

[Hutan]

Can you imagine someone suggesting to shut down the oncology wards and get GPs to be in charge of the cancer patients? It would be pandemonium.

Well, here in NZ we did have a situation where newly diagnosed Stage 4 bowel cancer patients were not able to be seen by an oncologist in the public system before their estimated time of death. In fact some indeed were not seen by an oncologist before they died, even though the time period was months. So GPs were pretty much what these people had. I'm not sure if it is different now.

But, this is the health system we are operating in here. And it is better than in many countries. So, it makes it really hard to campaign for specialist care for a disease that has no good treatments and that lots of doctors think is not real.

 

[dave30th]

I am more critical of the Plan than they are but I didn’t interpret their response as rubberstamping it.

i agree. I wouldn't call it rubber-stamping.

 

[Jonathan Edwards]

What sort of story would work, do you think ?

An honest story that admits that both the psychiatrists and the 'ME doctors' have made a complete mess of understanding the illness and presents what we know and what we don't know in the usual medical science terms expected in a textbook for any other disease. Reference to 'stigma' gets nowhere. But if you point out that we are gradually accumulating epidemiological and genetic evidence for there being a distinct syndrome called ME/CFS (not ME or CFS) that is comparable to MS or RA in a whole range of ways - and describe those explicitly, then there is some chance that doctors will actually say to themselves 'Ah, OK, I see what you're saying'. But you have to stick to real facts, including the vast areas of ignorance and negative findings that contribute to the picture.

The obvious way forward in the light of our deep ignorance about a syndrome that produces severe disability is to scrap all the current care delivery models and to set up clinical academic facilities where we can find out something useful. There is no point in ensuring everyone has the same easy access to care that is meaningless if not positively harmful. As things are at present basic care for the severe and very severe would be better provided by district nurse services that are standard everywhere - although of course seriously underprovided - than by professionals who have unhelpful beliefs about what the illness is and how to manage it.

I think we can put out that story from S4ME. The two fact sheets already done are a good start and we can gradually do more.

As it is what I see is various different groups of people, none of whom have any real grasp of the practical medical and scientific realities, arguing for months and years over pointless plans that end up doing more of the same. And the medical profession, not unreasonably, watches on thinking nobody has any idea what they are doing and assumes the whole thing is best ignored.

 

[Jonathan Edwards]

I was invited to join Forward ME around the time of the NICE committee. I said thank you but no. My reason was not that opinions appeared to be fragmented, making consensus impossible. It was the opposite, that everyone was boxed in to the same unhelpful model of the situation. Moreover, members were expected to stick to the party line in public statements. I needed to be able to point out that people were wrong when they were wrong. Getting things right in this sort of context is an extraordinarily complicated process that benefits from exactly the sort of back and forth disagreement we have here, where everyone gradually comes to see all sides of a problem and where we have been making false assumptions. And it has to keep going on because we still have so much to learn.

 

[Jonathan Edwards]

i agree. I wouldn't call it rubber-stamping.

I find that weird. There for ME put out material specifically endorsing the community aspect of the plan - which is really the crux of the matter. Maybe in toto it is more a rubber-stamping by default but it has the effect. It is a bit like saying of a new $80billion nuclear submarine that sank on launching "thank you, we liked it as far as it went'. We may be talking of just such a waste of $80billion over the next 10 years with these 'neighbourhood centres'.

 

[Hoopoe]

I notice how doctors often have no understanding of fatigue. There seems to be a large gap in education, which is surprising because fatigue is one of the most disabling aspects in many illnesses. They can confuse fatigue with daytime sleepiness, with rapid muscle fatigability, with depression, and with poor fitness. They may not understand that fatigability is potentially disabling, or that fatigue often means being unable to be active consistently and for most of the day, or that the ability to do one activity is a very poor indicator of overall ability to function of a person with fatigue.

One way patients are working against their own interests is to try to separate themselves from fatigue because it is misunderstood and has negative connotations. But that allows the misunderstanding to continue. I read that in France, patients have taken a different approach, and are trying to educate about and destigmatize fatigue.

Not educating people on fatigue means that they will continue to interpret it in the only way they can, via personal experience, or by thinking of the next closest thing they learned about.

 

[Sasha]

An honest story that admits that both the psychiatrists and the 'ME doctors' have made a complete mess of understanding the illness and presents what we know and what we don't know in the usual medical science terms expected in a textbook for any other disease. Reference to 'stigma' gets nowhere. But if you point out that we are gradually accumulating epidemiological and genetic evidence for there being a distinct syndrome called ME/CFS (not ME or CFS) that is comparable to MS or RA in a whole range of ways - and describe those explicitly, then there is some chance that doctors will actually say to themselves 'Ah, OK, I see what you're saying'. But you have to stick to real facts, including the vast areas of ignorance and negative findings that contribute to the picture.

That sounds good to me - the challenge is getting that story out there. I suspect the 'ME doctors' won't be convincable any more than the psychiatrists, though. There can't be many groups of patients who are basically under attack (and when it results in physical harm, 'under attack' seems appropriate) by misleading briefing on all sides, including from their charities.

The obvious way forward in the light of our deep ignorance about a syndrome that produces severe disability is to scrap all the current care delivery models and to set up clinical academic facilities where we can find out something useful. There is no point in ensuring everyone has the same easy access to care that is meaningless if not positively harmful. As things are at present basic care for the severe and very severe would be better provided by district nurse services that are standard everywhere - although of course seriously underprovided - than by professionals who have unhelpful beliefs about what the illness is and how to manage it.

Given what's just happened around the plan, it seems that the ME/CFS community itself doesn't understand what's needed - and it's understandable that ordinary PwME don't. We don't understand the system. I think this issue of 'specialist care' needs unpacking because we here know there are no effective treatments, so what should specialist care look like, beyond what a GP would do for individual symptoms such as pain and insomnia?

I think we can put out that story from S4ME. The two fact sheets already done are a good start and we can gradually do more.

What specific factsheets do you think are needed and should be the priorities?

 

[bobbler]

I was invited to join Forward ME around the time of the NICE committee. I said thank you but no. My reason was not that opinions appeared to be fragmented, making consensus impossible. It was the opposite, that everyone was boxed in to the same unhelpful model of the situation. Moreover, members were expected to stick to the party line in public statements. I needed to be able to point out that people were wrong when they were wrong. Getting things right in this sort of context is an extraordinarily complicated process that benefits from exactly the sort of back and forth disagreement we have here, where everyone gradually comes to see all sides of a problem and where we have been making false assumptions. And it has to keep going on because we still have so much to learn.

this is interesting context.

How do you think it would be best run (I don't know a lot about it) and by who (that's fine if it isn't a name but approx idea of what someone would have) and would that be someone that those making up ForwardME would buy into/work with if so? Are there certain types of areas missing from its membership ?

I'm just wondering what it could become - and how that compares to what it is now (I know it sort of is a meeting for certain organisations or people involved with ME, and theoretically provides a chance for coordination, but I'm not sure how that works - is it discussing or getting people into line/ or has that varied over the years?)

 

[bobbler]

I find that weird. There for ME put out material specifically endorsing the community aspect of the plan - which is really the crux of the matter. Maybe in toto it is more a rubber-stamping by default but it has the effect. It is a bit like saying of a new $80billion nuclear submarine that sank on launching "thank you, we liked it as far as it went'. We may be talking of just such a waste of $80billion over the next 10 years with these 'neighbourhood centres'.

So that I can get it straight.

The term community-based is unlikely to have the specialism level clinician, but theoretically could a regional centre that was run by a hospital-level specialist then set up services that are effectively delivered at that home-care or local level?

And would a difference be in that maybe one day theoretically if there was a critical mass (so they can't just be isolated and excluded) of these then they could impact the (often basic, rather than ME-cure/treatment, just support other very ill people with other illnesses might end up needing access to) care or pathway in hospitals in a way that a community-care team mightn't be listened to by a hospital?

I don't know how the hierarchy works?

And I'm of course all too aware there are probably buzz-word terms like 'specialist-something, locally-accessed/delivered' or whatnot.

I agree on it feeling like there is a need for a specialist nurse service, particularly if there is training that is centralised/specialist so that the lessons can be learned from those who are on the front line and there is opportunity for progress (and research)

 

[bobbler]

I also have that sinking feeling when severe is separated off too much, because it is so important for 2 reasons:

1. so that those who are seeing the other severities get a sense of where the illness goes, and of course what happens if someone who has been pretty severe does improve enough that if they pace and have the right support they might be able to function at moderate but those services don't understand the difference between that and eg being mild or moderate trying to do normal life etc?

How is the illness going to be understood if they've created an artificial idea by making sure that, yet again, those who even see some of the patients are having that filtered so that as soon as they get worse (potentially based on their advice) then they are what ... never seen by them again/which is treating people like failures the system will no longer care for? rather than a lesson going back into taking those who are milder much more seriously.

2. the strong likelihood bps and others are behind it for reasons that aren't good, and are trying to make those who are more severe seem like 'they have a different illness' and put those (who are often harmed from previous treatment for less severe ME/CFS) through the tired old rehab ideology or calling it psych by claiming 'ME/CFS doesn't get that severe' and relabelling their condition FND or whatnot.

Which has been the dread those more severe have lived under for so many decades.

 

[Jonathan Edwards]

I suspect the 'ME doctors' won't be convincable any more than the psychiatrists, though.

Most of the ME doctors are way past retirement age. And so are a lot of their original patient followers. We just need to move on from there without getting caught up in blood clots and other such stuff from new enthusiasts.

 

[Jonathan Edwards]

The term community-based is unlikely to have the specialism level clinician, but theoretically could a regional centre that was run by a hospital-level specialist then set up services that are effectively delivered at that home-care or local level?

Home care can be delivered by domiciliary outreach from hospital units or by district nurses who have had detailed instructions from specialist practitioners from the unit. To me 'local level' is a myth. It is just as easy to get to and from a hospital as a GP in most parts of the country. Hospitals are at the local level. (That does not apply to the Highlands but it is about time people in charge recognised the need for different approaches in different geographies.)

At the moment there aren't any 'services' to deliver. Advocacy groups keep banging on about having local services but until we have something worth providing this is just a way of pouring money down the drain or worse.

 

[hotblack]

At the moment there aren't any 'services' to deliver. Advocacy groups keep banging on about having local services but until we have something worth providing this is just a way of pouring money down the drain or worse.

This is where I agree with you but also perhaps have a different view on if we can make the ‘local level’ stuff work.

Decommission the ‘specialist services’ they’re a waste of, well everything.

Have local/community services deliver what people like me need, which is to have a couple of people I can build a relationship with come to do the routine non-ME stuff like blood tests and work with my GP practice on anything else. More and more routine tests can be done at home. Also if I were to injure myself or need things people are normally sent off to hospital for like stitches or a cast, I’d need that done at home. This is what local means to me. Workimg around the needs of severe patients and providing some consistency. Rather than patients having to work around the needs of a hospital structure and bureaucracy.

As the evidence base allows, find ways of us being under a specialism as you’ve described.

 

[hotblack]

That sounds good to me - the challenge is getting that story out there. I suspect the 'ME doctors' won't be convincable any more than the psychiatrists, though. There can't be many groups of patients who are basically under attack (and when it results in physical harm, 'under attack' seems appropriate) by misleading briefing on all sides, including from their charities.

I really think we need to change how we look at this. I understand why but think we waste too much time and energy focussing on those whose minds we cannot change. They’ve caused harm, but they will become irrelevant and we should let that happen.

Focus our efforts on those who don’t have their lives and reputations tied to old ideas. That is a far larger group of people and they will be much easier to get onboard with the new way of looking at ME/CFS.

 

[Kitty]

theoretically could a regional centre that was run by a hospital-level specialist then set up services that are effectively delivered at that home-care or local level?

It's hard to know because the information is (deliberately) vague, but that might not what they envisage when they say "neighbourhood".

The neighbourhood centre near my late mam's was called that because it was in a former shop in a parade of shops on a council estate. Neighbourhood in that context meant next door to Gregg's.

The idea was that it was accessible to people who're reluctant to visit GP surgeries, or who don't drive and found the longish walk between the bus stop and surgery difficult, or who had babies and toddlers and weren't sure whether a symptom was serious.

It was a kind of triage centre with a friendly face that also took part in special initiatives like lung cancer screening. You can see the thinking behind it, but it's neither use nor ornament to people with ME/CFS.

 

[Jonathan Edwards]

come to do the routine non-ME stuff like blood tests and work with my GP practice on anything else.

Edit: I wrote this having misread you as saying that you disagree! But the arguments are the probably the same!!!!

But that isn't an ME/CFS service, it is just providing a domiciliary general medical service. In the 1980s I did that personally from my hospital base, going out and taking blood or examining and advising. It can also be covered by a standard district nurse service - but that has been whittled down to nothing for everyone, whatever their disability. It does not require 'neighbourhood centres' with 'ME/CFS services.

I see what you are getting at but surely the answer is just to say that we need district nurse services that actually cover people who cannot get out of the house.

If the idea is that you really need some specially trained people who know how to take blood from people with ME/CFS without causing serious upset then have them come out from a hospital unit that knows about such things, on a domiciliary basis. In some parts of the country it may be sensible to have more smaller centres but if it is just neighbourhoods then you don't have the special expertise.

What we actually need is twice as many hospitals - so that there are hospitals even nearer to everyone. The current plan is using ME/CFS as a showcase example of doing exactly the wrong thing - moving care away from expert centres.

 

[Jonathan Edwards]

I have not really thought through what 'neighbourhood' is going to mean. An interesting question. They probably do not know themselves beyond a nice friendly term. But it may well be based on the idea that we don't need doctors much at all. A pharmacist who can tell you how to open the box of plaster to put on your broken leg at home maybe, or where to put the catheter to unclot your brain when you have a stroke? It is pretty terrifying.

 

[Sasha]

Should we be producing some sort of document on what is needed and why?

One thing we need is home visits from consultants when the phone/video won't cut it. Fat chance, maybe, but I don't understand why it's acceptable for the NHS to leave untreated people who are so sick that they can't leave their house. [Edit: I mean consultants for non-ME/CFS stuff that goes wrong with us.]