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

[hotblack]

But that isn't an ME/CFS service

Indeed. I don’t think we will have a useful ‘ME/CFS service’ until we know what ME/CFS is. But I would like consistent care and the chance for people to learn what I need rather than continually passing me on to someone else or referring me to a pointless ME/CFS specialist service and thinking I’m getting the support I need.

 

[hotblack]

One thing we need is home visits from consultants when the phone/video won't cut it

Why do we need consultants? What would they do?

 

[hotblack]

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.

I disagree. Hospitals deliver for hospitals not for patients. They become big, unwieldy and a nightmare. A lot of what people need shouldn’t be done in hospitals. It should and could be done elsewhere. Being able to go to a community clinic to get a scan has been so much easier for so many people. Having to to to a hospital for an out patient appointment suits nobody as far as I can tell.

There seems to be a fetishisation of hospitals. I do think the current structure doesn’t work and mixing acute care with everything else doesn’t work.

 

[bobbler]

, beyond what a GP would do for individual symptoms such as pain and insomnia?

this is a really good example of what I feel is a big worry. The treat the symptoms 'wishful thinking' of the entire professions that are involved, and indeed lots of people on the outside of it who intrude into our lives or surround us. That they can just use what works for them with all of these symptoms that have been given the same name. And when those don't respond as expected then whether they blame us or tell us 'well that's it so there is nothing else' then it is the same result. Not behaving right. Whether they admit to themselves they realise that is a behavioural attitude they've been imbued with or not.

There has been a lurch towards seeing, not just treating, ME/CFS as 'just symptoms' and worse treating those symptoms as if the illness which is counter-intuitive isn't there. Hence how first GET and CBT they won't get that these are harmful, and even most patients won't understand regarding sleep hygiene.

And yet something that might seem obscure, like B12 injections help me, and certainly don't cure me but means I can have something as I can bear screens, I dread to think what will happen because it isn't on the list and 'to be dealt with'.

I also spent so many years with the label having been given to me I'm pretty sure in order to not look into other pathology that I had. And so that narrative goes because then many years on anything you have is blamed on how you 'behave' after you got ill rather than the logic of before->consequence.

I also can't see at the moment how even in the best case scenario where magically some areas do understand PEM and the importance of it, we will move to cures by understanding from seeing enough different people over time what causes it or any mechanisms, so that we can hope for something that changes the underlying illness. So at best our hope is one day some of us might be able to/allowed somewhat live within the tiny envelope we have.

I also think that the grim thing about the misinformation and strategy to be divisive so even within the community we are encouraged to not say we are like those 'others' is that when someone has symptoms that are different to what they have then there is the assumption that is 'something else'.

Those who get some kind of sleep reversal I will say have probably got one of the most awful situations, with regard noone getting how it gets worse the more you don't go with it and therefore make the underlying condition (and cause) worse by making yourself more exhausted. And yet we all feel generally feel the need to hide it because it is truly so rejected or assumed to be all sorts of horrendous things that all lead back to someone 'intending to help' talking behind your back about undermining the little things you do to survive (like naps or hiding literally so that you can sleep before something, or have any time to do anything when you are awake ie genuinely awake).

Those in that situation feel the brunt of how the world would rather you can't function at all than be someone 'at the wrong times'.

 

[Ash]

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..

Absolutely.

TfME don’t seem to be on the same page as many of us in terms of what is required, or the means by which we could move the dial.

I don’t think an individual or group that would say what was required & stand firm would be allowed to participate. If allowed I don’t know how many would have capacity or willingness to stick around under such disadvantageous conditions, battling a sewage filled sea of bad ideas empty promises, ineffectual support, misinformation and prejudice.

Also any contributions that are solid and represent a meaningful challenge to the status quo, are almost certain to be disregarded. Such is the nature of these (non) contribution opportunities.

This latest (non) collaboration has gone the way these will always go when people don’t offer solid opposition. I don’t know what we can do about this because organisations that are naive or unprepared to fight or desperate or hopeful patients will always be plentiful and ready to engage on the terms of those denying us care. Where they will certainly lose. To all our disadvantage.

I doubt There for ME mean to be rubber stamping this. But the organisation are lending this product credibility by engaging with it without the necessary critical analysis, or forceful rejection.

It’s devastating to see the progress made over Maeves parents public exposure of her tragic abandonment and horrific death be swept aside in a sea of vague airy nothingness.

Our chance to break with this dynamic of failure with inevitable deadly outcome would be to engage exclusively on our own terms.

 

[Ash]

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.

Almost certainly.

 

[Utsikt]

I keep going back to cancer.

In Norway, many municipalities have dedicated teams for ALS and terminal cancer patients. They come home to you and do whatever they have to do, including blood tests.

Nobody really knows about this, even most GPs are ignorant about the possibility. But as far as I can tell, it would have been a good solution for ME/CFS.

The local hospital did a project a few years back where they tried to set up an ME/CFS clinic. It kind of exists, but it’s too small and staffed by people that don’t really understand ME/CFS. The patients wanted home visits, but they were unable to do it because of resources. The same hospital does home visits for cancer and ALS.

 

[Ash]

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.

Indeed.

More hospitals. For everyone.

Our country hasn’t been training doctors, or paying the ones they have enough, or protecting them at work with PPE in this pandemic era, so we have too few.

So we get less and less medical care for more and more patients.

 

[Sasha]

Why do we need consultants? What would they do?

Sorry, I should have said that I didn't mean for ME/CFS but for other things that go wrong with us that require being examined or hands-on treated by a consultant. I'll edit my post.

 

[Jonathan Edwards]

Why do we need consultants? What would they do?

To identify what the problem actually is if it cannot be conveyed by video.
Specialist nurses can be very good at this too, but have more limited training.
And if consultants never see problems face to face they will never learn.

 

[bobbler]

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.

thank you for confirming. This was the bit that I was trying to clarify the wording for.

I've had a relative who was in orthopedics for example and was in hospital but then once home arrangements for care from nurse and physio etc (relevant for that situation) were arranged and I assumed there was instruction coming from the hospital to wherever might have engaged those.

I did wonder whether it was important to distinguish that 'home care' or 'locally delivered' etc from who takes ownership, but didn't 'hand over' care.

Whether it is a GP who requests a blood test or a consultant at a hospital (which might have been via telephone appointment) I am still likely to end up having only the same options of where I can get same blood taken based on what the trust offers and if I can pay for mobile or it is something that needs to be taken at the hospital because of the nature of what is being tested.

I'm assuming this would not happen but I'm guessing by neighbourhood clinics the likelhood of eg a proper consultant then travelling around 'more local' clinics on different days is never going to happen and instead it would be for example turned into 'MUS therapists' treating lots of different illnesses and located at whatever neighbourhood base.

I also don't really understand how those more able to travel in the mild/moderate group have the 'location' focus defined only, and nothing for severe/very severe.

I also don't get what it is that would need to be delivered by a neighbourhood whatever vs a letter from a non-neighbourhood specialist centre being able to (and in a position of authority to) direct a more local service? If it really were going to focus on things like adjustments, equipment, and medical care that isn't necessarily only specific to ME/CFS patients.

What exactly has ended up being asked for. ANd what has been provided instead/in response (if it is in-line with the ask)?

 

[Sasha]

Is there an identifable next step for us in this omni-shambles?

Or identifiable next steps that we would like others to take and that we could push for?

 

[bobbler]

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.

Agreed. Say my GP surgery has 5 people with ME/CFS and maybe there are 8 others that are within a small enough area you'd even begin to call it local. That is max 40 pwme. Before you start deciding a certain severity doesn't warrant access.

So whilst going to a hospital isn't actually easy at all, I can't see how it won't mean either the services where it is the dodgy part of town 'local' (unfamiliar with, but maybe technically closer to some) by geographic area and/or lumped in stuff with other illnesses.

But no staff trained specifically in our illness. Because if they won't fund one proper nurse for the bigger level then how are they going to train someone locally?

 

[Ash]

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.

Over & over again….

 

[Jonathan Edwards]

I disagree. Hospitals deliver for hospitals not for patients. They become big, unwieldy and a nightmare. A lot of what people need shouldn’t be done in hospitals. It should and could be done elsewhere. Being able to go to a community clinic to get a scan has been so much easier for so many people. Having to to to a hospital for an out patient appointment suits nobody as far as I can tell.

I had this argument put to me by a Dame who is a high court judge a week or so ago. It is entirely bogus!!

Who says hospitals deliver for hospitals? What does that mean. They try their bet to sort out people's problems as far as I know. That seems like an anti-hospital fetish - which I have seen repeatedly over the years at socialist meetings and in left wing newspapers.

They need to be big to have all the necessary resources in one place. They become unwieldy when they are not properly resourced and you get hour long queues for blood tests and pharmacy. The answer is to resource them properly. They are only a nightmare if they are unable to provide rapid comfortable service. When I had a neurological episode a while back I had the most wonderful and rapid care in Ipswich Hospital because there is a priority stroke pathway that says you have to diagnose within an hour or so. If you have something else you probably wait six. Again, it is an argument for more and better resourced hospitals.

Why shouldn't things be done in hospitals? Where is the reason? Going to a community clinic for a scan is easier because they have been set up at great expense in partnership with a private sector that creams off profit and takes all the qualified staff away from the hospitals. And you are seen quicker because they are inefficient and have gaps in their lists. Why is it inherently better to go for a scan through a door in a small building than a big one? Again, this is an argument for more large efficient hospital scan units where an important result can be flagged up to a specialist in the same building who can sort the medical problem out the same day rather than have the report written by someone in India and emailed to be seen a week later if ever by a GP.

Small places are quieter and easier at present simply because they are expensively inefficient. Going to a properly resourced hospital would suit people far better. The idiocy of the current system is that the NHS is desperately trying to save money but at the same time pouring money into tin pot inefficient units that somebody profits from and that destroy any cohesive ongoing education program. Because of an anti-hospital fetish. How can anyone argue for a pro-hospital fetish in this country when we have fewer hospital beds than any other civilised country, and way fewer than most?

 

[Jonathan Edwards]

I doubt There for ME mean to be rubber stamping this. But the organisation are lending this product credibility by engaging with it without the necessary critical analysis, or forceful rejection.

Yes, that puts what I meant clearly.

 

[Chestnut tree]

Is there an identifable next step for us in this omni-shambles?

Or identifiable next steps that we would like others to take and that we could push for?

I would start with the very severe who are at risk in hospitals and need care the most. This would also get the message across that this is a very debilitating disease and is not just being a bit fatigued.

 

[Sasha]

I would start with the very severe who are at risk in hospitals and need care the most. This would also get the message across that this is a very debilitating disease and is not just being a bit fatigued.

But in terms of specific actions, what can we do?

 

[hotblack]

I had this argument put to me by a Dame who is a high court judge a week or so ago. It is entirely bogus!!

Fair enough. I think this is getting way more ideological than I thi k is helpful. I agree with all the points about resources. I could argue your big vs small building points in reverse. Or we could go off into if centralisation or decentralisation has worked.. but I think it’s probably all a distraction

Simply put the care and support I need isn’t in my mind currently a hospital thing. Maybe it will be in time and if we can get under a specialism then great but that isn’t a quick thing I don’t think. I don’t care how it’s delivered but ai want it delivered.

 

[hotblack]

Sorry, I should have said that I didn't mean for ME/CFS but for other things that go wrong with us that require being examined or hands-on treated by a consultant. I'll edit my post.

Sorry, understood. That makes sense. I’d add that for some of us having a consultant turn up at our houses being like consultants so often are and thinking they know it all is the last thing we need.

One issue here is so many of us need different things that here isn’t one simple answer or message I think.