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

Someone said earlier on this thread that BACME were not involved in development of the plan. Their statement says they were, it is signed:


I note in particular their statement makes it clear they think existing therapist provided services should continue. Yet the Development plan says mild and moderate should be the province of GP's.
Also Vikki McKeever
GPwas involved with sessions I attended..
Slippery with words I say.
I can't be bothered to revisit the notes and those damn Miro boards.
 
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I wonder what Javid thinks of this.

I also wonder why Sonya allows herself to be quoted as sounding positive, even if she does sound cautious.
It's likely that more care is needed on media training and statement preparation. Every word and sentence matters - especially when it's likely going to be cut & respun. But that's the problem of giving too much to thanking and bending the knee.
 
If a neuro-immunology professor at Queen Square or Addenbrookes picked up on ME/CFS as something worth tackling in the way that Fluge and Mella already have, then we begin to have a wedge that can drive out all the other garbage.
Which is great for the top end, for research and so on. But some of us need people to take bloods, give us vaccines and deal with day to day problems *now*. This has fallen apart and I don’t see hospitals doing it anytime soon. No matter what may have happened in the past (many decades ago).

Specialist care also keeps the problem out of sight, and out of mind.
Exactly. Even now it’s passing the buck. GPs can say they’ve referred you. Hospitals can say it’s not their problem. Nobody learns. We get passed around and fall through the gaps.

Perhaps where ai seem to differ from others is I really do think having nurses and other regular staff working with us in a consistent and reliable way will help. I think Jonathan said consultants only learn by contact, by seeing people, well the same goes for all other staff. The difference is other staff can see people every month. Consultants once every few years it seems. That’s the reality with other conditions.

I agree with the goal of being under a specialism. I want that. But I also think we can’t wait for that and see no reason why we should’t push to get basic care working better in conjunction with that. And if we can use bits of this plan to get that we should. Not because the plan is good but because we need to.

I see this very differently to the unhelpful approach being taken by charities. It’s not about getting inside the tent or supporting poor specialist services. It’s about improving the lives of many of us and giving more staff real contact with people (especially with moderate and severe ME/CFS). And basing that on things like DecodeME and whatever fact sheets we can produce. That is how they will learn.
 
I see that argument @hotblack. I have been running it through my mind. It makes sense but my fear is based on the trials suffolkres has had in Suffolk. The plan says there should be services. Those have to be put out to tender. The bidders will need to submit PROMS- type result sheets showing that patients say they got better. The stupidity of the internal market will take over.

I think the problems you describe are problems for everyone trying to use the service. When my wife went insane I had to provide 24 hour care because the supposed care involved a Catch22 that it could never happen. I was lucky to have 6 months compassionate leave. Looking back, very lucky and largely because my immediate line manager was both a friend and medical director. The whole thing is busted. And no, that problem is not going to be fixed by academic centres.

Maybe I am a wee bit too cynical but when I first joined this group members were right to point out that I was not cynical enough.
 
I know I keep beating this drum, but whatever passes as healthcare today might end up doing more harm than good if the wrong people get involved - it doesn’t matter if it’s from specialists, hospitals, GPs or some kind of desentralised model.

It almost makes me think that it would be best to find the right person to lead things first, and then push really hard to get them in charge of whatever the government will accept.

We’ve seen in Norway how bad things can go if the wrong people get put in charge of what’s supposed to be a good concept.

There’s also the example of Røysumtunet, an ideal organisation with 6 beds for the most severe, run by Dag Storla. You can pay privately (1.6M NOK/year / £120k/year) or hope that your municipality will agree to cover it (they most often do not). The environment is great in terms of stimuli etc., but Storla still offers loads of alternative treatments (vitamins, LDN, LDA, etc.), believes that certain personality types are predisposed to develop ME/CFS, and that stressful events often are involved in the onset.

So barely any learning happens there. Storla also runs a private clinic where he helps with diagnosing ME/CFS (he does extensive tests as far as I’ve heard), but again, very little learning due to the lack of scientific rigour.

I think it must at least be considered if it’s best to try to find the person first, and then create a job for them.
 
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If I remember right the working groups/plan came about because of a new Minister of Health with a personal connection who was only in the position to influence things for a very short amount of time. Change in Germany happened because of a sympathetic Minister of Health who has now gone..........
 
The problem we are trying to solve at a local level with GPs and hospitals is that ME/CFS patients are denied care. They are denied feeding tubes when they need them, they are denied blood tests and various drugs to treat their symptoms. They are gaslit and denied an official diagnosis for decades often their entire lives. That has to change, but its not a special service its prejudice that needs to stop, its why the education can't be optional and why ME/CFS patients need a special place to complain about being denied treatment.

The other problem we have is most of us can't really go to a GP or a hospital, we are too sick and it will induce PEM to do so. The NHS as it stands is not setup for home service at all, and it needs to be because this patient cohort needs it. We have a lot of medical needs that can be treated in the usual way but the existing medical system is not accessible for us. Hospitals are far too big, loud and bright for us to attend them. If the system can't accomodate us then they don't have much choice to make completely specialised local services that do provide the home service and the accessible environment for in building services. Otherwise healthcare is just ignoring we existing and harming us everytime we interact with it, as has been the case for 50+ years.
 
The problem we are trying to solve at a local level with GPs and hospitals is that ME/CFS patients are denied care. They are denied feeding tubes when they need them, they are denied blood tests and various drugs to treat their symptoms. They are gaslit and denied an official diagnosis for decades often their entire lives. That has to change, but its not a special service its prejudice that needs to stop, its why the education can't be optional and why ME/CFS patients need a special place to complain about being denied treatment.

The other problem we have is most of us can't really go to a GP or a hospital, we are too sick and it will induce PEM to do so. The NHS as it stands is not setup for home service at all, and it needs to be because this patient cohort needs it. We have a lot of medical needs that can be treated in the usual way but the existing medical system is not accessible for us. Hospitals are far too big, loud and bright for us to attend them. If the system can't accomodate us then they don't have much choice to make completely specialised local services that do provide the home service and the accessible environment for in building services. Otherwise healthcare is just ignoring we existing and harming us everytime we interact with it, as has been the case for 50+ years.
Exactly right.
That's why we fight and fought over the specification for 2 years...
But who knows what remains of our
'red flag requirements' - all mentioned avove,

after the likes of 'alternative thinkers' within ICB, court likes of MEA *non clinical*

who are courted in turn by BACME, and assured openings for CIC who provide and aligned with government ideology ..

Digital, track and monitor, tick tock, done job......
So much for personalised care....

Those within who strive to respond to the Lived Experience and patient voices, are knocked out like skittles......

30 years on, we are not even back where we started ....
 
I think the problems you describe are problems for everyone trying to use the service.
Forgive a Yank popping in to the discussion, but it does seem like this may be a key to the dilemma of services NOW for ME/CFS patients: collaborating with patients with other diseases/conditions that also require home care because most of those patients are probably falling through the cracks too within the current shit show that is the underfunded NHS. And you may even be able to show that it's cheaper to provide home/domiciliary care than what they are currently doing.

I'm very lucky to have been receiving such care for the last 14 years through a practice here in Portland, Oregon called Housecall Providers.
In home medical care for homebound and seriously ill members of our community is proven to increase patient comfort, improve health outcomes, reduce health care costs and increase provider/care team satisfaction. Through our participation in the Medicare demonstration, Independence at Home, Housecall Providers saved Medicare millions of dollars, while providing better care to our patients, ensuring greater patient comfort, improved health outcomes and care team satisfaction.

With the population aging, more people are suffering from multiple chronic conditions and degenerative diseases. This trend will continue as roughly 10,000 baby boomers a day enter the Medicare system.
I can't remember offhand how precisely they achieved cost savings, but I'm guessing a big part of that has been reduced ER/A&E use, preventative health care, and limiting long-term hospital care using visiting nurses.

My GPs have (mostly) been nurse practitioners, many of them geriatricians as homebound seniors make up the bulk of their patients. But they also include younger patients homebound with MS, cerebral palsy, ALS, etc. Not only do my GPs come to me, but I get all blood work done at home and even X-rays and ultrasounds. Are they ME/CFS-specific? NOPE! And certainly during my Great Crash of Autumn 2020 I really wished my GP at the time would have known more about ME/CFS. But otherwise, since there is nothing really to be done to treat ME/CFS, they've provided the primary care I've needed: medication management, yearly labwork, referrals to specialists as needed, etc. And the time I get to spend with my GP! I usually see her 3x/year maybe (more if needed via phone or video) and my appointments often last an hour and half. There is also a care-coordinator to talk to when there are problems with an Rx or paperwork needing to be done (and she's a total rock star of assistance!).

Housecall Providers does run on a shoe-string budget funded by a variety of sources. I'm one of those whose care is paid for by the closest thing to socialized medicine we have in this country: Medicaid (which is miserly at reimbursing providers though private insurers can be also). It does mean they're constantly begging for donations (which, if your mom or gran has just been well-cared for by them for years before dying, you're often in a donating mood).

I would imagine there are a lot of patients throughout the UK with conditions other than ME/CFS who need home-based medicine and building a coalition of patient constituencies may have more impact. I definitely agree with @Jonathan Edwards regarding university-specialty clinics for the research end of things. And also understand @hotblack and others regarding the immediate need for just some basic, accessible primary care. I suspect the sort of care I'm getting is similar in some ways to the domicilliary care Jo was describing as providing early in his career. Maybe a coalitional campaign to bring back/fund proper, widespread domicilliary care?
 
Who says hospitals deliver for hospitals?...

They need to be big to have all the necessary resources in one place.
I'll agree with Jo with my own experience with Ipswich Hospital but in the opposite direction. Twenty years ago (when my ME/CFS was moderate) I was visiting my partner, who was living in Ipswich at the time. A few days after arriving I started having pain in my calf --- especially concerning given my history of blood clots. My d-Dimer was elevated at the A&E but they had no one to do an ultrasound by the time I was seen. So they gave me a shot (of Lovenox I assume) and told me to come back to an attached clinic the next day during office hours. Thankfully there was no clot when I finally did get my ultrasound. But this American was utterly baffled; no ultrasound tech in an A&E?! There has always been a least one ultrasound tech on duty in an ER regardless of time of day with a portable ultrasound machine (or, at least, there have been at the three hospitals here in Portland I've had to visit multiple times for this issue over the last quarter century). It could be that was just some fluke than night in Ipswich but if even a hospital doesn't have something as basic as 24-hour access to ultrasound, what chance is a local community clinic going to have?

Now if we could just get hospitals on both sides of the Pond to feel less like something out of GITMO enhanced-interrogation sessions for ME/CFS patients...:emoji_worried:
 
I see that argument @hotblack. I have been running it through my mind. It makes sense but my fear is based on the trials suffolkres has had in Suffolk. The plan says there should be services. Those have to be put out to tender. The bidders will need to submit PROMS- type result sheets showing that patients say they got better. The stupidity of the internal market will take over.

I think the problems you describe are problems for everyone trying to use the service. When my wife went insane I had to provide 24 hour care because the supposed care involved a Catch22 that it could never happen. I was lucky to have 6 months compassionate leave. Looking back, very lucky and largely because my immediate line manager was both a friend and medical director. The whole thing is busted. And no, that problem is not going to be fixed by academic centres.

Maybe I am a wee bit too cynical but when I first joined this group members were right to point out that I was not cynical enough.
I liked your idea for specialists to do home visits (on another thread some time ago). Ideal for ME patients
 
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We have discussed research and care. Maybe the elephant in the room that the plan gets most wrong is education.

If Emperor Constantine wanted to convert his Romans to Christianity he would not have produced baby Jesus learning modules for novices in temple schools. He would have told the High Priests of Zeus that they now had to be Cardinals worshipping Christ.

The medical education system is hierarchical. Exams are written by College committees. What is the point of providing e-learning for trainees if the exam-writers think that you treat starvation in severe MECFS with robust psychological support? The government people writing the plan should have been told that they needd to grasp the nettle and point out to all the Royal Colleges that their stated policies and textbook chapters were criminally negligent. And told them to write some decent textbooks.

This to me is another reason why we need academic clinical centres that tackle things like feeding problems. You then have to have physician experrs doing something sensible rather than the whole profession pretending the problem does not exist.
 
If a neuro-immunology professor at Queen Square or Addenbrookes picked up on ME/CFS as something worth tackling in the way that Fluge and Mella already have, then we begin to have a wedge that can drive out all the other garbage.
Completely agree with your comment, unfortunately it’s not for lack of certain neurologists trying to get them engaged. I’ve been through the mill at Queens square with no luck and my private neuro-immunologist has recently tried to engage a well respected clinical autoimmunity/immunology professor at Addenbrookes to contribute to my care. But it’s been a dead end given my widespread neuropathy including cranial nerves, erythromelalgia/dysautonomia etc isn’t secondary due to lupus or vasculitis where patients have been worked on between them previously.

And this is me trying to pull a few strings having worked for the trust for 15 years (extremely limited now from home only a few hours a week). So essentially I’m trying to say it’s not for lack of some doctors in this country recognising how debilitating this illness is and trying to get us the care we deserve.
 
Charles Shepherd will be on Radio Scotland at 10-40 .
Health is devolved. I seriously hope that this is not emulated .
Having no services was exactly what saved my daughter from GET and the ability to avoid a referral to Bath.


I've posted on their Facebook page

ME Association. Your tireless advocacy has to be applauded , but what exactly has being in the tent achieved in this process here ? In reality NICE guideline compliant services are few and far between in England and Wales , GET has simply been rebranded, the rehab model is of very limited use ( refer to ME Action clinic survey which would be good to do again now for comparison to gauge change ) still causes harm and is now being expanded. Be careful what you wish for.
Having few services in Scotland saved many from GET, which was suspended by Scottish Parliament pre NICE changes.
The DHSC Delivery Plan fits neatly within the 10 year plan in dismantling specialist care through the NHS. .
Lack of consultant specialists is a serious issue , medical education a very serious issue and training materials are mediocre. These need priority to be able to change anything at scale.
The NICE guidelines should have initiated change , in reality they haven't and now prop up and perpetuate a system that has never worked for the majority
Essentially not much has changed.
Scotland has the opportunity to build something from scratch. It would be very foolish to start with this plan

I hope you don’t mind but I screenshotted your whole conversation on Facebook because it was a challenge and response to challenge that I feel reveals a lot about Dr Charles Shepherds thinking about the plan and what happens next - in my view there's an insanity position of keeping on keeping on, in the same vain as the past 27 years which have delivered so little. I’m starting the 27 year count from when the MEA first got involved with what was supposed to be the groundbreaking "end to neglect" government report published 2002, yet which began in 1998. Patients have basically been told since 1998 be patient and wait whilst they negotiate behind the scenes.

Dr Charles Shepherd says
"They are now very well aware of what is going wrong with both services and research. But it's a very big disappointment that they were unwilling to put in place the radical change that is required
Despite this I am not giving up and will continue to meet with all of these organisations. Just giving up is not the solution"

The thing is, they were made very well aware of the m.e predicament in great detail & the need for inline-with-other-illnesses research and services back in 2002, with many excellent recommendations.

New tactics should have been used from the time the MRC point blank refused to commission research as recommended in 2002 chief medical officers report (around 2006. It was also at this time that the APPG, when it was truly radical and agenda driven, was deciding that the MRC preferred method of action, a highlight notice , wasn't working, other mechanisms to drive research needed to be found & that an urgent injection of money to biomedical research, atleast at the level of that previously put into behavioural research, was due. Dr Ian Gibson mp of The APPG, around the same time (2006 2007 Gibson Report), had wanted to put an early day motion calling for massive m.e research funding and an HIV style research effort but apparently this or something else in it was too controversial, and it was shelved as the charities began the collaboration effort of the ME expert group . Since then, early day motions have mainly been used to congratulate the CMRC or MERUK rather than drive major change, the APPG has become much more conservative & charity - lead and the MRC have basically taken the **** with their attitude to collaboration.

I’m putting in this history because it’s a history of injustice and a history of failure and keeping on keeping on let’s get round the table for the next five years re. small measures is just not cutting it. People are dying waiting , people are growing old waiting, having spent 20 years trapped in the house, why isn’t this portrayed as a terrible injustice by our charities. Why aren’t they proposing anything stronger, than politely pointing out failures as disappointing but essentially saying they look forward to getting back in to discuss the small measures in this plan? Its rollover in action, no wonder the government thought they could get away with anything.

Governments delivery plan on ME ‘disappointing’ says charity


This newspaper article ended with a statement from the ME Association read: “The ME Association will continue to monitor the plan closely and remain actively engaged with colleagues in the Government’s Department of Health and Social Care (DHSC), and we thank the DHSC team for their commitment and dedication.
“We look forward to working constructively with the Government to push the plan forward as a priority and ensure that these actions support people living with ME/CFS.”

Edited to add some more details & opinion about the history and add the statement from the ME association
 

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Three things I would note there @jaded .

I got referred people with all sorts of diseases when I was developing rituxmab treatment and had to say no simply because I didn't have enough information to justify treatment in a special context. This isn't about treating one off cases but about systematic basic research and tight trials.

The second thing, to be blunt, is that nearly all well respected autoimmunity/immunology professors don't know their sacrum from their elbow. There may be one or perhaps two neuroimmunologists in the UK with the wide angle vision to see the potential for progress. I will make some enquiries to see which.

And the other thing is that the reason to hope for interest is very new, coming mostly from a range of genetic studies but also some cell studies. Up until very recently there haven't been any meaningful leads.
 
Maybe I am a wee bit too cynical but when I first joined this group members were right to point out that I was not cynical enough.
I understand and share the cynicism. But to be blunt, it’s not a luxury I can always afford. I have to do whatever I can to get some basic care. Will I be successful? Maybe not. But it seems worth a try. And I’d like to work with others to use whatever resources we have to do so.

And no, respectfully what I am talking about is not what everyone experiences trying to use the service. It’s not what people I know with cancer, MS, PD or various other conditions experiences. There are similarities and yes everything is under resourced, fragmented and broken, but there are unique circumstances and attitudes around ME/CFS. That people cannot see that is perhaps part of the problem we face. We are seen as ‘just another group’ calling for something.
 
We have this thread for critiquing the delivery plan which is important. There”s a lot wrong with it. I’m going to start a thread asking if there’s steps we can take.

It doesn’t stop us saying what we don’t want or that other things are rubbish or that we need to be under a specialism when the evidence enables this. But it may make things less difficult for us while we wait for that. And the impact of many people interacting with services in a different way day to day could do more to educate people than a video with CPD credits or finding one or two specialists who can see a few dozen people at most.

We’ve had a period where GPs and hospitals both ignored us because they could, either because they could say we didn’t have a real disease or they could farm us off to a ‘specialist clinic’. This will hopefully change soon. I’m proposing we reverse that with a two pronged approach. It may help hollow out those unhelpful services too. As I’ve said before, why would those commissioning them pay for them if they don’t do anything useful?

What if we can take DecodeME, our own documents and yes, the delivery plan and go to local services and ask for what we want. Not depending upon charities or other intermediaries to communicate it.

There’s a good spread of us across the country. Imagine if we all sent a similar message, that could at least be heard by GPs, ICBs and all those commissioning services. Would it have a difference? I don’t know but it seems better than doing nothing and it’s what I intend on doing. I would love to work with others on this.

If people have any ideas on what steps we can take please let us know.
 
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