What about the 25% who are severe and more complex moderate cases? We aren’t just talking about the needs of the mild affected or those newly ill who just need the ABC of management spelled out. And even then, there are medical needs in all , for example in the whole of east Anglia, there is no pots specialist at all. The Nice guidelines specify that people with m,e should only be given MEDS for pots and OI from a specialist, so where are people in East Anglia supposed to get this, and why isn’t isn’t it part of the m.e service? NHS England stipulated long Covid Service should be physician-led and one stop shops ,where all long Covid need might be met.
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UK Government Delivery Plan for ME/CFS, published 22nd July 2025
- Thread starter Nightsong
- Start date
I agree with this I think they made the first module more generally available. I don't understand why they restrict them. I think the severe one will come out soon and from what I have seen its ok.Why would they restrict access to contents of the education module about severe and very severe patients? Does anyone know why they would do this? Are there other examples like this?
I assume its there default position to keep training modules private.
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
Jonathan Edwards
Senior Member (Voting Rights)
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.
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.
Jonathan Edwards
Senior Member (Voting Rights)
I don't see it can be argued to be a default position if the others are public, There must be a specific reason. It may be legitimate but it would be nice to know what it is.
I think we need to have at least some services that serve severe me and can build expertise in the country. . Are there any other conditions with this potential and spectrum of severity That are just left to GP’s? I think dementia might be the only one. I think severe ME needs more complex than you present for example nausea , gastro issues. severe anxiety, complex sleep meds, in my case unable to relax my muscles. I had to fight long and hard just to get any help with trying drugs like baclofen and benzo because GPs are reluctant to prescribe these, , central sleep apnoea has been part of my presentation, which I was lucky to get zopiclone for but some GPs would not have prescribed that long term and melatonin I only got because a psychiatrist would prescribe it.
I don't know about all the courses they produce. I intent with module 1 was to make the first one widely available so that it could be targeted at a range of different people involved in the care of people with ME. For example, social workers, carers, dwp staff, medical receptionists as well as the medical staff. Then the split between 1 and 2 wasn't as clean as they would have liked so I think module 2 got more access.
JellyBabyKid
Senior Member (Voting Rights)
Yes. Exactly this.
Andy
Senior Member (Voting rights)
Because those people who did express such reservations weren't listened to; once that was apparent then I didn't continue to waste my precious energy on pointless actions, especially as I have more productive things to focus on.
I think this is important
I’ve thought we need a section anyway that is a bit like ‘everyone’s invited’ somewhere for me/cfs classics/ bigotry we get everyday given that’s how it operates in undermining us
The fact these staff write these things openly is very important ‘insight’
I’m actually watching a programme stm on race in America and how they approach the tiresome slog of turning that around and at some point eg re the justice system they realised they had to start asking eg judges question like ‘have you ever used x word’, ‘how many black members staff have you hired’ as part of presenting the case of bias. And what was going on.
Jonathan Edwards
Senior Member (Voting Rights)
I hear you @Andy.
And may be some of us were not even invited to this phase of the process because of a nod from so-and-so about 'negative attitudes'?
The problem is that these are not just pointless actions. They are seriously damaging actions that can put all that has been achieved in the last 10 years back to square one.
I want to know who didn't listen to you. Who are the human beings responsible for these decisions who are so ashamed of their work that they are not prepared to have their identities at the top of a plan? If this plan was produced in good faith why are they not out there, ready to receive thanks and constructive questions?
Who was in charge of this?
Were there any physicians there at all and if there were, why did none of them point out that the plan for care is ungrounded and counterproductive?
Sasha
Senior Member (Voting Rights)
How can we find out? Because it looks deeply weird to me. NICE guidelines aren't private - why would any of this be?
Kiristar
Senior Member (Voting Rights)
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?
The MRC existing centres look good too. 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. But we have to keep trying and chipping away.
I can't see BACME seeing the light so 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?
Not having this has left us on the back foot I feel, though granted it's a chicken and egg situation.
I also have been puzzled by who has made the decisions in this process, and why they aren't on the media explaining the plan. 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?
Ariel
Senior Member (Voting Rights)
In relation to the training modules, isn't it nonsense to have "training" on mild and moderate ME/CFS without training or knowledge of severe and very severe cases?
And so everyone needs access to those modules at once; the training will not be complete as they would not understand the condition being treated - that is bad, but much worse is that part of the point of treating milder cases is presumably to prevent them from deteriorating into severe and very severe ME/CFS.
It would make more sense to start with the education modules on severe patients so people know what they are dealing with and they should be aiming to stop people from deteriorating if they can, esp as there is no treatment or cure. This may also make them feel like they can actually do something useful and not just say "not my problem, nothing we can do".
And so everyone needs access to those modules at once; the training will not be complete as they would not understand the condition being treated - that is bad, but much worse is that part of the point of treating milder cases is presumably to prevent them from deteriorating into severe and very severe ME/CFS.
It would make more sense to start with the education modules on severe patients so people know what they are dealing with and they should be aiming to stop people from deteriorating if they can, esp as there is no treatment or cure. This may also make them feel like they can actually do something useful and not just say "not my problem, nothing we can do".
Might be worth setting up its own thread to collect good LC research and clinics etc.
Agree time might be of the essence
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?
Robert 1973
Senior Member (Voting Rights)
Have they? The statement on their website praises some aspect of the Plan but also expresses concern that it doesn’t go far enough: https://www.thereforme.uk/p/final-delivery-plan-for-mecfs-out:
“After years of waiting we’re pleased to see that the Final Delivery Plan for ME/CFS has at last been released. The Plan includes some positive first steps in the right direction, which could lead to improvements over time. Yet we would have liked to see it go much further and remain disappointed that targeted funding has not been announced alongside it.
This is about more than words on paper: it is about the people lying bedbound in darkened rooms across this country, who desperately need safe NHS care and research to accelerate treatments. People with ME, and those who care for them, have waited too long and deserve a clear, properly resourced roadmap towards a better future. While the Delivery Plan offers a first step, we hope to see greater prioritisation and proper resourcing as we move into its implementation.”
I am more critical of the Plan than they are but I didn’t interpret their response as rubberstamping it. However, I’ve not managed to keep up with a lot of the discussions. Is there something I’ve missed?
I think it's probably more a case of indifference.
The government minister who set it up was from a different political party and had a personal interest in it because of a family member.
The current government's actions make it clear that their approach to ME/CFS is more guided by the Suzanne O'Sullivan and BPS approach, with the aim being to get sick people back into work using 'rehabilitation'. Hence things like the apps that are co-funded by the DWP and DHSS. I doubt any of the government ministers involved have a clue about ME/CFS.