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

Michelle said:
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.
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Michelle said:
[...]


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?
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This is really interesting. I'm constantly saying to my GP, 'But loads of very elderly people in care homes must be bedbound, and it wouldn't be possible to transport them in a wheelchair because they couldn't cope with sitting for long. What happens when they need to see a consultant, or have an X-ray, or get hands-on treatment, and can't go to the hospital?'

And I can't even remember what he's told me, presumably because whatever it was, it didn't help.

But yes, are thousands of non-PwME also being left untreated in their beds by the NHS, with no question of their medical problems being 'all in their heads'?
 
hotblack said:
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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Excellent idea to have an action thread! :thumbup:
 
Jonathan Edwards said:
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.
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Our whole situation seems to represent a decades-long abdication of responsibility for the well-being of PwME by the medical profession (present company excepted!) and by government. We can't rely on them to change themselves and our charities seem to weak and too 'We welcome these first steps...' to have any effect.

So we're all that we've got left. How do we become Emperor Constantine and influence the royal colleges?
 
At the end of the day the only thing that matters to all governments, is money. They don't care about human lives.
The blob obviously thinks it is still more cost effective to downplay the severity of our condition and ignore us. Perhaps if they realised the true cost of this illness to the economy they would do something more substantial.
I have worked out that I am costing this country 80k a year in lost tax and occupational pension. I have cost the country about this much for 26 years now. So that is over £2million lost to the country so far. On one person. The true cost is probably far higher as I would most likely have been promoted/had inflationary pay rises, had I kept on working. In this context a 200k investment seems completely insane.
Has anybody on this forum ever tried to do an actual calculation of the cost to the country of all of us here combined?
Mind you, the blob would probably just use the information to increase access to euthanasia!
 
Hoopoe said:
I notice how doctors often have no understanding of fatigue.
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The medical profession, from day one of med school through to at least a decade or so post-graduation, selects ruthlessly for stamina. Those who can't hack it get weeded out early, at least from the clinical stream. Those left on their feet tend to have less direct experience and understanding of serious chronic lack of stamina and how it affects people's lives.
 
hotblack said:
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.
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I was wondering if it was the right time to start a thread to establish if we have any consensus on what is our preferred model of service delivery until such time as there is an identified treatment. (I guess ignoring the fact that in the UK at least there are likely to be few if any staff suitably experienced to staff any proposed services.

Whilst responding to NICE’s guideline consultation we seemed to favour the idea of specialist nurses managed by a consultant, is that still the case? Would different models be required for different countries?
 
Peter T said:
I was wondering if it was the right time to start a thread to establish if we have any consensus on what is our preferred model of service delivery until such time as there is an identified treatment. (I guess ignoring the fact that in the UK at least there are likely to be few if any staff suitably experienced to staff any proposed services.

Whilst responding to NICE’s guideline consultation we seemed to favour the idea of specialist nurses managed by a consultant, is that still the case? Would different models be required for different countries?
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Come 1st August, an agreed Draft Specification and dedicated pathway should be finalised and in the public domain from Suffolk NE Essex ICB and Suffolk GP Federation,

(plus Essex GP equivalent who have taken over current tender contract.)

SNEE with specialist steer from CureME LSHTM ME Biobank involvement.

The framework will be a start with key KPIs.

Suggestion?
S4ME might like us, to be invited to help with feedback and Lived Experience feedback in the transition to the new service?

As a start, suggest S4ME have a serious critique of the service spec and overview it as it unravels?

I trust S4ME rather than other favoured charities to do this!
 
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Suffolkres said:
Suggestion?
S4ME might like us, to be invited to help with feedback and Lived Experience feedback in the transition to the new service?

As a start, suggest S4ME have a serious critique of the service spec and overview it as it unravels?

I trust S4ME rather than other favoured charities to do this!
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Sorry, @Suffolkres, I don't quite understand what you mean. Do you mean that your group will be invited to give feedback on the new service spec and that you would like S4ME to give feedback too?

Is that spec out already? (I haven't been following.)

Can you think of a way to do this that wouldn't overload the committee (who are always quite thinly stretched)? Maybe collect comments in a structured way that could then be easily summarised into a concise document?
 
hotblack said:
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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So far I have tried writing to my ICB and to my MP to no avail. They seem to find it acceptable that I have no care.
 
Sasha said:
Sorry, @Suffolkres, I don't quite understand what you mean. Do you mean that your group will be invited to give feedback on the new service spec and that you would like S4ME to give feedback too?

Is that spec out already? (I haven't been following.)

Can you think of a way to do this that wouldn't overload the committee (who are always quite thinly stretched)? Maybe collect comments in a structured way that could then be easily summarised into a concise document?
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The chat this morning was about a model of care and possible specification and Pathway. SNEE draft version 17 was in public domain on Find a tender.
If we can provide that as a discussion point?
 
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Jonathan Edwards said:
It's a good idea @hotblack . Suffolkres has been trying to achieve this for a decade or so and been frustrated but now, or quite soon, may be the time to have a more concerted effort. One thing that seems to have come to the fore is the lack of insight into the medical logistics of some of the charities.
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Yes, I’ve watched the work @Suffolkres has been doing has been doing with part admiration, part shared frustration. Definitely an inspiration though. While the charities have been somewhat disappointing on this front.

Kiristar said:
So far I have tried writing to my ICB and to my MP to no avail. They seem to find it acceptable that I have no care.
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I’ve had contact with mine in the past too. And am trying with my MP and GP practice again.

I’m not going into this all misty eyed with optimism or high expectation, but what’s the alternative? I do wonder if the time to at least shove things in more of a direction we want or get heard or get at least a few people thinking is either right or necessary. And some grassroots community efforts to do that seem possible. The community here with its knowledge and experience helps.
 
@Jonathan Edwards I realised my comment about the differences people with ME/CFS have, in the context of you describing you and your wife's experiences was insensitive and I apologise. I don’t mean to diminish the challenges you or many others face with the services. I see them too.
 
hotblack said:
@Jonathan Edwards I realised my comment about the differences people with ME/CFS have, in the context of you describing you and your wife's experiences was insensitive and I apologise. I don’t mean to diminish the challenges you or many others face with the services. I see them too.
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No need to apologize. The discussion clarifies things. Psychiatric services are bad in a way that they are not for motor neurons disease etc. MECFS services are uniquely bad in certain ways - that is a very valid point.

This is another thing I need to address for my medical professional factsheet draft.
 
Peter said,

'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.'

Yes!
 
Suffolkres said:
Peter said,

'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.'

Yes!
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Specification (draft as amended v 17 submitted on public access In-Tender)
Used during Procurement Process ended 30th May.

No idea what latest agreed final Specification says .....

No idea whath'mobilisation' horse trading negotiations have been, or are currently underway.

Now with ICB Contract team to achieve a final sign off... for 1st August 2025?....

Suffolk ICB, frustrated persona non grata... member of VS and carer service user with 30 years Lived Experience!
 
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