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

[rvallee]

One thing that seemed to be taken on board by DHSC was that ME/CFS services should not be under psychiatry. Of course people can get re-diagnosed but the draft template for ME/CFS seems to steer clear of any mention of psychological medicine.

That might of course change since this is only a consultation exercise with ForwardME.

Everything seems to have shifted towards rehabilitation anyway. Psychiatry hasn't really been relevant in ME/CFS, other than some prominent ideologues being psychs themselves, but even that was mostly cover for generic rehab that was always meant to be carried out by therapists.

The language seems to follow along as well, and never really needed psychological justifications anyway. Even the new exercise rehab folks doing the same old BS with LC mostly don't bother with attributing this to deconditioning, they merely mention it in passing and go ahead as if it's the problem anyway, in fact pretty much have dropped all pretense of having to justify anything, and throw the old terms as needed.

 

[Robert 1973]

MEA Facebook post on the DHSC meeting:

ME Association

DHSC DELIVERY PLAN - A meeting with the DHSC and NHS England took place today to discuss an action in the DHSC DP for NHS England to prepare a template for the delivery of clinical services to people...

www.facebook.com

Some posts from Charles:

We had a two hour meeting with representatives from the DHSC and NHS England this morning to discuss the current draft of a template service plan for people with mild and moderate ME/CFS. Representatives from Forward ME Group, as well as other people present, made it clear that it is unacceptable to omit the care and management of people with severe and very severe ME/CFS from referral service clinical care plans/pathways. Our very serious concerns were listened to and if we are not happy with the content of the next draft we will continue to forcefully press this crucial point. Dr CS MEA.

This is the statement I placed in the written comment section at the start of the meeting today. >>

Many of us here today are extremely concerned about the continuing lack of information about what is going to happen to people with severe ME/CFS when this template only covers mild and moderate ME/CFS and some form of national strategy for very severe ME/CFS has been left to ministerial action - where we are again lacking any meaningful information as to what is happening

So please can we have time during this meeting to discuss why there appears to be no planning taking place to link in with the recommenations in the NICE guideline regarding severe ME/CFS and to deal with a considerable number of people who are not only severely affected by ME/CFS but are also severely neglected by the NHS and social care provision

I am not aware of any other specialist service for a serious long term condition that excludes people at the severe and very severe end of the spectrum

Dr CS MEA

Paul Morris One of the many other points that was under discussion today was the fact that some of the ME/CFS referral services are still situated in mental health departments or are led by psychiatry. Whilst we all accept that mental illness is real and horrible the inclusion of ME/CFS under a mental health specialty is wrong and unacceptable. DR CS MEA.

Gillian SmithYes - medical education was discussed today with helpful contributions from Dr Luis Nacul and Dr Binita Kane

Dr Kane and I will be meeting representatives from the Royal College of Physicians on Wednesday to discuss medical education of physicians on ME/CFS

Dr CS MEA

No mention of the focus on “rehabilitation” or need for physician-led services, as far as I can see.

@Jonathan Edwards Was there anyone else at the meeting who made it clear that they share your concerns about these services?

 

[Jonathan Edwards]

@Jonathan Edwards Was there anyone else at the meeting who made it clear that they share your concerns about these services?

Binita Kane endorsed my call for physician delivery but went off at a tangent talking about how she had had to move to the private sector. Presumably because she had no resources in the NHS.

Annette Barclay made the same points I had, very clearly.

But there was an overall sense that the general format was in place and needed some PROMS and so on and there was very little explicit resistance to this from the people present as a whole.

One thing I think that trips people up is 'NICE compliant'. While we want the spirit of NICE to be stuck to - evidence base - there is a. lot in NG206 that allows the system to carry on the same. That includes personal care plans, activity management and so on. All guff, presumably as a sop to the professionals present.

 

[Jonathan Edwards]

The woman who seemed to be in charge of the actual planning at DHSC mentioned talking to service provider leads, which would presumably be Anna Gregorowski, Yorkshire clinic, Vikki McKeever etc.. I go the strong impression she was aiming to make it clear that she had no reason to change tack at this point. I think ForwardME should have been much more pro-active a year or more ago, but I was not involved.

 

[Lou B Lou]

The woman who seemed to be in charge of the actual planning at DHSC mentioned talking to service provider leads, which would presumably be Anna Gregorowski, Yorkshire clinic, Vikki McKeever etc.. I go the strong impression she was aiming to make it clear that she had no reason to change tack at this point. I think ForwardME should have been much more pro-active a year or more ago, but I was not involved.

So the DHSC is locked into consulting the service leads (BACME) and are not listening to Service Users.

.

 

[Jonathan Edwards]

So the DHSC is locked into consulting the service leads (BACME) and are not listening to Service Users.

Basically yes. It was pointed out right at the beginning of the meeting that the process was not co-developed' as was promised. There was time for people to put their foot down but they didn't (Annette tried her best). There seemed to be an acceptance that what we would get would at least be something and so that was OK.

I have to add though, that despite my view that we need physicians in charge I see less and less evidence of their being any who could provide a sensible service. I don't know why Luis used his time slot to talk about off label prescribing.

 

[Suffolkres]

So the DHSC is locked into consulting the service leads (BACME) and are not listening to Service Users.

.

So, no co production......So they are inherently on breach of the Care Acts relati g to this.
Healthwatch stuff needs to resurface.
Ww need to state as we did with NICE Review in 2017, there is a legal imperative here.

 

[Robert 1973]

I think someone proposed the idea of an open letter which outlines the type of services that are needed earlier in this thread. I think that might be a good idea. I also wonder if it would be useful to put it on a petition website so that patients could add their support and comments.

I take the point that physicians are not queueing up to run ME/CFS clinics but that is a problem that the DHSC and NHS need to solve. We can’t allow the current proposals to be presented as satisfactory or acceptable to patients.

 

[Nightsong]

Perhaps there might still be scope for DHSC to be forced to change trajectory if a number of MPs start raising awkward questions in Parliament as to why they are only consulting people who are very much part of the problem and not part of the solution. (I hear AfME have a network of "Parliamentary Champions" - what is the point of them if not for situations such as this?)

I would greatly prefer that the process was derailed entirely rather than accept a result that awarded more funding, power and resources to BACME members and other psychobehaviouralists & rehabilitationists, entrenching them yet further.

MEA and others keep focussing on NICE compliance, to our detriment. The charities' wholehearted, unqualified welcome of that guideline was and remains a very serious tactical error. They now seem to be labouring under the illusion that they are arbiters of NG206 rather than organisations set up to represent patients' interests regardless of what any guideline might say. And they - and all too many ordinary patients - either have not read the guideline properly or have an unusually rose-coloured view of what it actually recommends. By uncritically embracing everything it contains they have allowed our opponents to portray it as some kind of activists' charter rather than the messy compromise that it actually was. Their approach to this really needs to change.

 

[hotblack]

I don’t have much to add without screaming or swearing so will retreat to the science. But we will be screwed if BACME just get bigger contracts with conditions to include severe people in their pathways. Burn it all down. There seems to be people afraid of losing what they’ve got, be it their clinics, their influence, reputation whatever. Meanwhile we have worse than nothing. We have a lie being perpetuated throughout the health service thst should be supporting us.

Almost everyone involved (present company excluded ofc) should be absolutely ashamed of these games. And that’s all they are, games. Little meetings and presentations and playing nice to get scraps or contracts and not upset the people with job titles and letters after their names, it’s all too comfortable for them. They’ve had YEARS. We haven’t. Nobody is doing anything meaningful here to put a stop to the suffering.

Sorry. I’m just… it feels like so much effort trying to lobby and explain and we’ve been kicked in the teeth yet again. Same as every time.

 

[Kitty]

There seemed to be an acceptance that what we would get would at least be something and so that was OK.

It's potentially a problem even if service users are consulted. The old problem with democracy being fine, if it weren't for letting people vote.

Folk who've never really been involved in ME/CFS communities and advocacy might well think something is better than nothing—there are stories about protests over the closure of long Covid clinics, even though nobody seemed to be any better after getting therapped. I can see how people trying to keep their jobs might derive some benefit from being able to tell HR that they're engaging with treatment.

 

[Lou B Lou]

I don’t have much to add without screaming or swearing so will retreat to the science. But we will be screwed if BACME just get bigger contracts with conditions to include severe people in their pathways. Burn it all down. There seems to be people afraid of losing what they’ve got, be it their clinics, their influence, reputation whatever. Meanwhile we have worse than nothing. We have a lie being perpetuated throughout the health service thst should be supporting us.

Almost everyone involved (present company excluded ofc) should be absolutely ashamed of these games. And that’s all they are, games. Little meetings and presentations and playing nice to get scraps or contracts and not upset the people with job titles and letters after their names, it’s all too comfortable for them. They’ve had YEARS. We haven’t. Nobody is doing anything meaningful here to put a stop to the suffering.

Sorry. I’m just… it feels like so much effort trying to lobby and explain and we’ve been kicked in the teeth yet again. Same as every time.

THIS !

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[bobbler]

MEA Facebook post on the DHSC meeting:

ME Association

DHSC DELIVERY PLAN - A meeting with the DHSC and NHS England took place today to discuss an action in the DHSC DP for NHS England to prepare a template for the delivery of clinical services to people...

www.facebook.com

Some posts from Charles:








No mention of the focus on “rehabilitation” or need for physician-led services, as far as I can see.

@Jonathan Edwards Was there anyone else at the meeting who made it clear that they share your concerns about these services?

I second asking that question

Because there theoretically (but also practically where someone has taken a position stating they know what severe need and will be doing that and it seems there is question ducking and parsing on discussion these details with pwme constituencies even when it’s asked about) supposed to be people there who ‘represent us’ and yet checking what is actually ending up being said it’s difficult to know if it’s just people not getting a chance to speak up in that way or in said meetings they aren’t actually on the same side as we would be on these issues and maybe even are supporting bacme , rehab for severe etc

 

[bobbler]

The woman who seemed to be in charge of the actual planning at DHSC mentioned talking to service provider leads, which would presumably be Anna Gregorowski, Yorkshire clinic, Vikki McKeever etc.. I go the strong impression she was aiming to make it clear that she had no reason to change tack at this point. I think ForwardME should have been much more pro-active a year or more ago, but I was not involved.

Of course those are also leaders in bacme so part of forwardME ? Is this conversation now seen as supplier/business-side?


There seemed to be , exactly around that timeframe when it was obviously important, that there was a lot of drama and things being played behind the scenes type things that are hard to get confirmed detail on . I think the source / issue was generally tending to be one area I don’t know whether it got resolved there or just as happens put onto the back burner to never be addressed so the default /status quo remains or bad behaviour or changes never get pulled up

 

[Lou B Lou]

It's a shame the long timeline of the Delivery Plan process means it's probably not workable for anyone to do an FOI for Internal and External emails/Messages etc in the same way Dom Salisbury did for the NICE Guideline publication delay. So, hard to bring any behind-the-scenes emails/messages/influences to the light of day.

Text-message lobbying of senior NICE staff by individuals at NHS England and the Royal College of Psychiatrists in days before ME/CFS guideline pause

On August 4 2021, an embargoed copy of the final NICE guideline for ME/CFS — already severely delayed — was distributed to registered stakeholders “for a final factual error check, to enable [stakeholders] to highlight to NICE any substantive errors, and to prepare for publication and...

domsalisbury.github.io

.

 

[Jonathan Edwards]

Of course those are also leaders in bacme so part of forwardME ? Is this conversation now seen as supplier/business-side?

These people are not part of ForwardME, they were invited in to the meeting by DHSC.

 

[bobbler]

These people are not part of ForwardME, they were invited in to the meeting by DHSC.

Thanks - I find it complicated to think through as bacme is part of forwardME but also in other senses the ‘supplier’

So then my trying to mentally define what forwardME ‘is’ then gets complicated because I guess a lot of orgs part of it are ‘a supplier’ in some sense (of ‘something’ apparently for /to pwme) rather than a ‘rep’ of pwme.

 

[MrMagoo]

there is also the issue that I think ironically people are still led to assume that ME/CFS training is for 'those in the clinics' , who by the sounds are likely to be the ones least likely to want to read it and change in response to anything because the lead comes from BACME.

some HCPs might have training hours but I'm guessing that there is a long list of other things queuing up for that small amount of time and for those who have to justify what they've chosen (or not been able to read yet due to workload) you've got the issue it doesn't only have to be seen as 'worthwhile' by the HCP themself but also those they report to as a good use of their time.

And there comes the real question - for those who have read it is it 'a good use of people's time' or does the politics muddy the message and extend the length of time reading it when I think of eg @PhysiosforME putting sheets together with really clear 'what will they read' and 'what's the main penny-drop for this target audience we need to get across'. And then think of the different levels and layers of people we might encounter and the different situations for those (and how they might need further sheets if it goes to practice/partner meeting or ICB level)

Agree on the attitude stuff, and yes certain tropes with that list coming directly from us (and not compromised with BACME or those using them) just need to be outlawed as obvious and variations on them obvious. It would move knowledge forward more hugely than a lot of things too because it would stop the confusion that all those 'false beliefs' might be something other than that and have to be pandered too.

- it is quite funny that one large employer I know had an anti-bullying policy that was called 'respect and dignity' or something like that. ANd those two words chime a lot with me if you strip them down to the worst possible not giving someone those. It also feels like there are obviously ways people feel they can skirt that spirit with two-faced pretend polite whilst knowing they are being dismissive or pushin buttons on what someone has said is a specific disability (don't speak fast, give me time to process), then twisting that request to weaponise it as some other insinuation (cognitive dysfunction type bs) to achieve an end elsewhere - one thing I find incredibly disgusting as it seems to be at its worst in healthcare the one place you'd expect to have to be at least a bit better at understanding these things eg like a stroke patient isn't thick just because their speech is currently affected would be, you know, most needed/expected to be 'got' by HCPs and allieds vs a retail worker or accountant.

Funnily enough I have been thinking about how HCP’s compare to frontline customer service workers.

This is because I’m always shocked at how they behave so badly (I would never speak to a customer/client/service user the way they do, I’d be out of a job too!) I think it’s because they don’t have the skills (genuinely) they behave like the 90s call centre or customer services would, aka no training and make it up as you go along and do whatever you can to prove you’re right and they’re wrong.

They don’t need the skills because there’s no real comeback for them behaving like this. Patients have to see a HCP they can’t really go to someone different, and a complaint means basically nothing, so it carries on unchecked.

 

[Trish]

I find it complicated to think through as bacme is part of forwardME but also in other senses the ‘supplier’

I thought Forward ME was an organisation run by and for some of the UK national ME organisations. I don't think BACME is part of it. I hope someone can clarify.

I understand though that BACME have been very involved in the government planning for ME/CFS provision.

 

[Jonathan Edwards]

Thanks - I find it complicated to think through as bacme is part of forwardME but also in other senses the ‘supplier’

Is BACME part of ForwardME? We never seem to have BACME people on the working group.