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

[bobbler]

I've copied this main post in case anyone isn't on fb. Comments include a second post from CS (as they often do) one which also has some of the comments on the PULSE article so likely to be from HCPs

my bolding:

PULSE magazine (for GPs) covers the DHSC Delivery Plan
From the news item:

GPs are set to play a key role in delivering care for people with mild and moderate ME/CFS under a new delivery plan published today by the Department of Health and Social Care (DHSC).

NHS England is developing a ‘template service specification for mild and moderate ME/CFS’, which will be shared with integrated care boards (ICBs) to support commissioning.

According to the plan, this specification ‘will fully take into account NICE guidelines on ME/CFS’ and be delivered via the new ‘neighbourhood health service’.

Dr Charles Shepherd
Hon Medical Adviser MEA

 

[rvallee]

the HERITAGE study (Health Effects fRom Infection sequelae: Tailoring services and Advancing GuidancE), a new £1.4 million NIHR research programme, which will explore the cost effectiveness of existing healthcare models for both ME/CFS and long COVID with the aim of improving quality of care.

What's the point of this? We know they are crap. Chris and his team could do a lot with that money.

They will find that those rehabilitation models are promising, but more biopsychosocial research is needed to figure out how to deliver them properly. Buys a decade or two doing nothing useful while more lives are lost. As is tradition. Failure is the only option, because success would bring embarrassment.

 

[Hutan]

@Suffolkres has had a ridiculously agonising and unproductive slog of years trying to get a proper clinic in Suffolk. Is it time for all the charities to join up, choose a suitable location (Edinburgh?) and just start pounding and pounding and never shutting up about it until they get one? And for all of us to pile on to a single parliamentary petition? It shouldn't be left to individual PwME to do this. And I don't see the BACME clinics being able or willing to transform into what we need. We need something independent of the usual rubbish clinics.

Or do we float the idea of using some of the DecodeME cohort as a sort of virtual clinic?

AfME runs virtual clinics. Maybe that is one way forward - improve those clinics, capitalise on the accumulating knowledge and patient base. Make the connection to research much more explicit and planned for?

But if there aren't any coming in and there is nothing to tempt them that isn't going to happen. Putting up money will just attract dead wood. Like all these things, there is no recipe. You have to grasp opportunities as they evolve.

Best wishes with the grasping of opportunities.

I liked @wigglethemouse's suggestion of clinics covering ME/CFS and rare diseases. So, there would be expertise in diagnosis, and in illness management in the absence of good treatments, and in providing patient cohorts for trials. Maybe that is an idea that could be applied in other countries.

 

[bobbler]

I've copied this main post in case anyone isn't on fb. Comments include a second post from CS (as they often do) one which also has some of the comments on the PULSE article so likely to be from HCPs

my bolding:

PULSE magazine (for GPs) covers the DHSC Delivery Plan
From the news item:

GPs are set to play a key role in delivering care for people with mild and moderate ME/CFS under a new delivery plan published today by the Department of Health and Social Care (DHSC).

NHS England is developing a ‘template service specification for mild and moderate ME/CFS’, which will be shared with integrated care boards (ICBs) to support commissioning.

According to the plan, this specification ‘will fully take into account NICE guidelines on ME/CFS’ and be delivered via the new ‘neighbourhood health service’.

Dr Charles Shepherd
Hon Medical Adviser MEA

some bits to highlight from the PULSE articles itself: https://www.pulsetoday.co.uk/news/c...USK-JcEyA8W6UQTO9w_aem_8xY6rT0cRuyibjBQonJYtA

The Government said the template [service specification] aims to support more consistent local provision of services and improve quality of care. Stakeholders will be consulted through a new health services subgroup of the ME/CFS Task and Finish Group.

The plan also includes early steps toward commissioning a specialised service for people with very severe ME/CFS. DHSC and NHS England will ‘explore whether a specialised service should be prescribed by the Secretary of State for Health’ and have held initial discussions. This would be subject to advice from a clinical committee and funding availability.

there is also of course a line about the guideline 'row' and how there was a 2023 article claiming not recommending GET+CBT wasn't evidence-based hmmm..

 

[rvallee]

Some comments on the Pulse article —

Keeping in mind those are verified comments from GPs in a GP magazine. This is why I keep mentioning that the comments we see on reddit are all very typical of the medical mindset. They are not extreme, in fact they are very much average. They feel comfortable saying horrible things because they know they are in a context in which no one minds them. Fundamentally it's no different than any other type of bigotry said out loud in a group where bigotry is one-upped, a sign of strength.

I read this and feel the same way as a pig listening to the butchers talking would, and it's telling that one of those comments mentions migraines. How does it make sense? Migraines haven't been considered psychological for many years, and yet those beliefs are still common. This is not a few bad apples. In fact it's the fact that the bunch is so spoiled that no apple is safe from going spoiled. It's a culture of mindless indifference that sees nothing wrong with delivering nothing of value. What an odd... bunch.

Actually, those comments, and the many more open expressions of hate we systematically see about us, are extremely important in that they explain everything. Everything. Why no progress, no support, no respect. It explains it all. No one needs to look any further than what is quite frankly as close as it gets to a "two minutes of hate". No system or culture can support people it views with this much contempt and misinformation. It's completely incompatible with delivering good outcomes. There is no reasoning with people like this, this is close to the language people use when they see others as vermin, worthy of being eliminated.

 

[bobbler]

YOutube link for it

includes Sajid Javid who picks out the 2 points of 'something suggesting they might plan for those more severe is potentially a positive thing' and how important proper research will be / is and the need to fund it.

 

[NelliePledge]

I sent AFME piece to my MP together with the latest Sean ONeill Times Article. I already told her that it was a bare minimum product so they can say there is a plan. My ME is moderate severity but I would happily forgo what they are proposing for mild & moderate pWME in favour of a proper effort to address the needs of severely and especially very severely affected people with ME. I actually think learning how to support severe people would be the best way of educating all medical professionals.

 

[Jesse]

I liked @wigglethemouse's suggestion of clinics covering ME/CFS and rare diseases. So, there would be expertise in diagnosis, and in illness management in the absence of good treatments, and in providing patient cohorts for trials. Maybe that is an idea that could be applied in other countries.

In the Netherlands they're trying to set up something like that (well, no public clinics, that's only for LC, see below, but they do work with private clinics).

NMCB:

The aim of this project is to realise a national infrastructure for biomedical research on ME/CFS, in which universities, teaching hospitals and other research centres cooperate as broadly as possible.

One of the activities of the consortium is the establishment of a comprehensive patient cohort and biobank. In this regard, attention is given to the inclusion of severely ill patients and the application of international diagnostic standards. The biobank collects medical patient data and patient material for scientific research and the cohort forms a patient registry for conducting clinical studies.

International collaborative partners include: UK ME/CFS biobank, Solve ME, Open Medicine Foundation (OMF) and Charite Berlin.

ME/CFS Lines:

In the ME/CFS Lines consortium, UMC Groningen and several research partners collaborate to build a ME/CFS cohort (patient group) and biobank based on the existing Lifelines population cohort. In 2018, this cohort contained data and biomaterials from 2,500 participants with ME/CFS. Since then, about 400 participants have developed ME/CFS. The biomaterials are being used to map genetics, microbiome, antibody repertoire, proteome and metabolome in ME/CFS patients. With this data, researchers can figure out how changes in these domains contribute to the development of ME/CFS.

Also for Long Covid: Post-COVID Network Netherlands:

This kind of a registry has great advantages. ‘Imagine we want to launch a study on a specific drug and need 100 people who are suffering from brain fog, a symptom not all post-COVID patients have. Such a portal would allow us to identify suitable patients quickly.

For Long Covid they did set up expert clinics in most university medical centers. Obviously ME/CFS patients were neglected and aren't allowed to be treated there. Which is very ironic when you consider that most of the treatments they try there come from the personal experiences of ME/CFS patients over the past decades.

The potential is definitely there, although proper execution is important. Then of course we need to utilize these cohorts for actually good research. It's also nice to see the focus on international collaboration.

 

[Suffolkres]

It is a bit peculiar. No doubt we can organise access through a member with the right email, somaybe we can find out!

Contradicts what was said in Exeter Coroner's Inquiry last year by interim Medical Director Dr Anthony Hemsley.

 

[BrightCandle]

Restricting access and keeping the module's contents from (most) patients will only inspire further mistrust. Not sure why they're doing this.

Given the first two were pretty bad and received a lot of comments that were never addressed I can't help but think they have just decided to hide the controversial bits. Its unacceptable that its not reviewed and needs to be challenged robustly.

 

[Sean]

Repurposing drugs, at this stage, lacks the necessary rationale to choose which drugs to test. Though DECODE might provide some.

Also agree that most patients do not need any specific 'treatment' or management advice, beyond a few basics. Sort of thing that could easily fit on a page or two, and which mostly involves medicine admitting that they have no explanations and treatments to offer.

Problem for medicine, of course, then becomes having to face some very awkward questions about WTF have they been doing for the last 50 years on this matter? In particular, how did they manage to make a very bad situation even worse?

 

[bobbler]

I disagree, I think severe and complex cases benefit from drs building up expertise and specialising. Tragic cases deserve support in off label medicine and I also think m,e clinics should be offering OI & POTS diagnosis and care. Eg my m.e is associated with an inability to relax my muscles, there may be some meds that are more m.e friendly than others, expertise doesn’t get built up with gps dabbling around or more often, refusing to prescribe anything

agree

 

[MrMagoo]

If there is a service template for mild to moderate, and an “exploration” of how to serve the very severe, then what happens to severe people? Still nothing?

 

[bobbler]

If there is a service template for mild to moderate, and an “exploration” of how to serve the very severe, then what happens to severe people? Still nothing?

But worried myself given that BMJ article with garner and miller among others which tried to sell the idea the Leeds psych place could heal ME

Then pretended they were citing a cqc report of it in said claim but it was a self-written report that happened to only include something like 4 of their patients there who had the cfs (psych code) but might have been there primarily for something else.

It was so obviously what most would consider fraudulent in laypersons context of pretending that paper demonstrated that was ‘the way forward’ it just to me showed up how far off the reservation the profession is allowing certain sectors and individuals to go.

 

[JellyBabyKid]

Problem for medicine, of course, then becomes having to face some very awkward questions about WTF have they been doing for the last 50 years on this matter? In particular, how did they manage to make a very bad situation even worse?

As the comments under the Pulse article demonstrate, no one cares. There is no shaming people who just aren't bothered.

That the MP in charge didn't notice that they put out a press release without actually publishing the plan, and had to be told by another MP, and that this is the absolute best they could do in three years and it is pretty much the same as the CMO report from 2002 and Sean O'Neill describes it as "a plan without a plan" and people continue to die, shows just how much no one is in the slightest bit bothered.

Between this and the nonsense with MEA, Elaros and BACME I absolutely despair. We are absolutely and completely shafted.

I am not even convinced even if DecodeME find something definitive anything will change. This has become a confluence of medical, political, social security and charity sector failure and it seems to suit those systems so there is absolutely no incentive to change anything.

With the price of lives continuing to be wasted being completely accepted and somehow our own deaths being own own fault while they continue to go around in circles perpetuating the same nothing and making money.

 

[Chestnut tree]

Some comments on the Pulse article —

Does Su’joy’ mean no primary care, no care at all? Or skip primary care and on to specialist care?

 

[Sean]

and making money.

Yes, somebody is doing well out of our suffering.

I sit on a man's back, choking him, and making him carry me, and yet assure myself and others that I am very sorry for him and wish to ease his lot by any means possible, except getting off his back.​

​

Leo Tolstoy – Writings on Civil Disobedience and Nonviolence (1886)​

 

[Cinders66]

As the comments under the Pulse article demonstrate, no one cares. There is no shaming people who just aren't bothered.

That the MP in charge didn't notice that they put out a press release without actually publishing the plan, and had to be told by another MP, and that this is the absolute best they could do in three years and it is pretty much the same as the CMO report from 2002 and Sean O'Neill describes it as "a plan without a plan" and people continue to die, shows just how much no one is in the slightest bit bothered.

Between this and the nonsense with MEA, Elaros and BACME I absolutely despair. We are absolutely and completely shafted.

I am not even convinced even if DecodeME find something definitive anything will change. This has become a confluence of medical, political, social security and charity sector failure and it seems to suit those systems so there is absolutely no incentive to change anything.

With the price of lives continuing to be wasted being completely accepted and somehow our own deaths being own own fault while they continue to go around in circles perpetuating the same nothing and making money.

I don’t think there is any mistake in this choreographed stitch up. I don’t think the leaving it until the last day of parliament was a coincidence. I don’t think putting chronic fatigue syndrome as the big header was just a mistake, nor the minimising of severe m.e to housebound and unable to work. I don’t think The accidentally not putting out the report was a mistake, I think it was done because that was a way of slowing down the patient response and having less influence on any immediate media. I think only channel 4 referred to the patient response and thank goodness they did because it is the patient response & Sean o neal not the MEA that stood in a firm way in rejection of what’s been “delivered”.

Edit Who chose the “i have been ill 4 years and was once severe but I got better in a year” case study for channel 4 - the charities or BACME. What a relief to the public to know that even if the report is lame people just get better over time without any licensed meds or nhs care anyway. Of all the case studies they could have chosen.

 

[Chestnut tree]

I don’t think there is any mistake in this choreographed stitch up. I don’t think the leaving it until the last day of parliament was a mistake. I don’t think putting chronic fatigue syndrome as the big header was just a mistake, nor the minimising of severe m.e to housebound and unable to work. I don’t think The accidentally not putting out the report was a mistake, I think it was done because that was a way of slowing down the patient response and having less influence on any immediate media. I think only channel 4 referred to the patient response and thank goodness they did because the patient response & Sean o neal is the only thing that stood against in a firm way a rejection of what’s been “delivered”.

Agree, political, media and healthcare landscape are all working against us. Most charities are in the boat with governments.

There needs to be a big change, even starting with small steps.

Because even if more biomedical proof was found, in this current landscape, they would find a way to not act on it.

 

[Cinders66]

If there is a service template for mild to moderate, and an “exploration” of how to serve the very severe, then what happens to severe people? Still nothing?

Yes I thought it was just a very severe, I presumed some type of inpatient provision which they've only had 16 years? to come up with, since the closure of Queens. they're doing the same old thing, where they talk about the mild- moderate as separate and that will get an app or just GPs looking at the pulse article . if they keep putting it off , most of the very severe may have died off anyway. The wider 25% severe who cover the spectrum of housebound and deserve medical care are conveniently ignored and as unserved as ever, but the NICE guidelines pretty much erases them anyway but stipulating function is about 1%. I don't think it can be understated how how the charities have failed in the severe representation and colluded with a burial of it as far as I'm concerned.

I think the charities sitting back and letting the mild -moderate be siphoned off for low key management, the severe being ignored and the very severe having lip service/ exploration is a disaster and yet this is what they've done for the past 20 years there's been no pushback against the Care Of severe ME. And it obvious why they want to do this approach because it enables them to essentially carry on carrying on , there's no need for proper medical services in line with other serious conditions that not only would deliver decent care for all but would help build up expertise and stimulate research interest.