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

Utsikt said:
On paper, that should be a good thing.

In reality, it got staffed by disciples of Wyller, and they’ve become the authority on ME/CFS in Norway. They are currently in their 13th year (it should be a maximum of 10), and we’re struggling to get them shut down. They have a massive influence on the new Guidelines that are being created, and that you will be required to follow if you work in healthcare (not just encouraged). They are of course tied to OCFN, COFFI, etc. They also massively influenced the welfare authorities.
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Yes, be careful what you wish for.

Something is not necessarily better than nothing. Depends on what that something is.
 
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
 
Binkie4 said:
ME Research UK response to delivery plan. Lengthy - not yet read., brief skim. Seems thorough. Apologies if it's published elsewhere. Think I have read most of thread.
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It focuses on research and makes the mistake of attributing to the Plan things that were set up by others and have nothing to do with the plan. The Heritage thing looks like a complete waste of money. A pity that MERUK have not seen through the wool being pulled over everyone's eyes.
 
MrMagoo said:
Which drugs might be repurposed though?
Apart from some ideas about LDN (low dose naltrexone) which seems more based on a desire for it to be a solution, how do we repurpose a drug to solve an unknown problem?
Isn’t repurposing drugs just a stab in the dark?
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The patients I see and follow up longer term who improve objectively are ones trying longer term antimicrobials. Not seeing those listed in the suggestions to try.
 
Amw66 said:
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
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I've just listened to this segment. Charles wastes valuable time talking about historical minutiae of ME in Scotland in the 1980s and ends up completely failing to answer the question about the Delivery Plan. With all due respect to Charles, this isn't good enough. No one listening needs to know about Dr Peter Behan and Charles' chickenpox.
 
Chestnut tree said:
Does BACME have any links with SMC or BPS?
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If by SMC you mean Science Media Centre I doubt it, but I am not sure that would be relevant?
BACME practitioners have followed treatments developed by peole with a biopsychosocial view but as a group they tend to work within a rehabilitation framework that has been using this sort of approach for even longer (back at least to the 1950s). Recent BACME literature has distanced itself from specific biopsychosocial rhetoric and trials. They say they don't use the methods studied in PACE. If by BPS people are referring to Wessely, Chalder, White, Sharpe, etc. I doubt these individuals have impacted on this process directly. Pretty much all of them are retired from active practice now anyway and they were never interested in community-based rehab delivery. They were interested in promoting treatments in a hospital psychiatry setting.
 
Chestnut tree said:
Does BACME have any links with SMC or BPS?
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That depends what you mean by 'BPS'. BACME was chaired by Esther Crawley back in the day. I don't think there are direct links now, but I suspect several members, particularly those in London, Bath, Oxford and Bristol, have at some stage worked with one of Wessely, Crawley, Sharpe, Miller, Chalder, Santhouse, etc.
 
InitialConditions said:
That depends what you mean by 'BPS'. BACME was chaired by Esther Crawley back in the day. I don't think there are direct links now, but I suspect several members, particularly those in London, Bath, Oxford and Bristol, have at some stage worked with one of Wessely, Crawley, Sharpe, Miller, Chalder, Santhouse, etc.
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I think the last direct link was probably when BACME was chaired by Gabrielle Murphy, but she stepped down a few years ago.
 
bobbler said:
And I think the same needs to be asked of/checked with other charities/players (ie maybe it’s just individuals within them rather than even that assumption that the person who got the seat at the table is taking a position that follows a full discussion of what the position fit those they represent should be) who’ve got themselves a voice

Which is that there surely should be a group of allies who can agree on what we need to be asking for - none of it being extraordinary vs what would be the norm for an equivalent other illness and much of which most laypersons probably assume we actually have and are complying ware there really is nothing (and no medical care for anything else for many pwme due to the bigotry)

If the allies aren’t joined up and clear but those bps who are hostile are then it makes it so unlikely we get something moving the right way.

Have any of these players made what we need clear and started joining up based on ‘the ask’ and who needs to/would be good for what (such as who writes modules). Or has everyone been distracted by this process and giving their own individual answer over the last years rather than working together. And are there significant differences between either these orgs and what they want to ask for ‘in our name’ or what they want to ask for and what we as pwme might actually want?

I actually feel pretty clueless now about what many of them might even think would have been the ideal
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I did not see the early stages but in the latter half I would say that FME and MELN did a good job of unifying the patient voice and T4ME, having started from a different place, largely, though not entirely joined in.

The lack of funding was inherited from the start of the process and it seems the new top government ministers had no appetite to change things.

So the DHSC, which did slowly start to "get it" have funded a little via the NIHR, a small but significant shift from their original position, thanks to the patient and charity stakeholders representational effort.

But the MRC remained obstinately disengaged and there was no top down pressure to alter that travesty via the science ministry under which they sit, even despite vocal researcher protests.

I very much hope @Jonathan Edwards is right that this is about to change anyway and Decode will put ME/CFS research "in the club" but for me, that sea change is very hard to imagine at the minute, the researchers seem to have given up on even applying. But it's not over yet. Time will tell.
 
InitialConditions said:
I've just listened to this segment. Charles wastes valuable time talking about historical minutiae of ME in Scotland in the 1980s and ends up completely failing to answer the question about the Delivery Plan. With all due respect to Charles, this isn't good enough. No one listening needs to know about Dr Peter Behan and Charles' chickenpox.
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Sounded like waffle to avoid the subject, absolutely not what patients needed on this rare media opportunity about an important report. Afaics on my first listen , Neither Charles nor Janet critiqued the report in a meaningful way , even after making allowance for them speaking regarding the Scottish context. However people on Facebook are telling the MEA it was a fantastic interview and this is why I have reservations about patient representatio, especially if it’s secret, anonymous with lack of confirmation it is including a wide range of opinion and severities because you can have 10 patients All who have one opinion yet that may be very different to another ten.
 
Kiristar said:
So the DHSC, which did slowly start to "get it" have funded a little via the NIHR, a small but significant shift from their original position, thanks to the patient and charity stakeholders representational effort.
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I don't see any movement on funding from DHSC. The opportunity to fund drug repurposing has been on the table for several years now and there have been bids for trials. It is easy to say they have somemoney specially for this but people will still have to bid and may stillbe turned down. The Heritage thing is just a waste of public money. NIHR was always a window dressing exercise. Nothing has changed.

MRC had already moved. I don't know all the facts but it does look as if they were unsympathetic to competent projects in the past. I never thought much of MRC peer policy. Fiona Watt seemed to have no idea and Colin Blakemore was positively abusive about ME/CFS patients. But it is worth remembering that they set up an international search exercise to get ideas for good projects. Appropriate biomedical researchers were recruited and apart from some supporting a GWAS project there were essentially no suggestions other than some interests of the individual researchers. If there really were good projects out there the biomedical research community was very poor at articulating the needs. Now we have some ongoing funding in Edinburgh.

Why was there absolutely no mention in any of the Plan documents about specialist hospital clinical centres to build a research base? Were they asked for? If the DHSC were to 'get' anything it ought to be the need for these. I hear about various patient advocacy groups calling for things but did they recruit anyone medical who knew what was feasible and what was likely to make a difference? I get the impression not. Why is the whole thing shrouded in secrecy, as Cinders66 says? There more I hear the more this sounds like a sop rather than a plan. A PR exercise inherited from a previous minister that needed to be delivered in order to look sympathetic.
 
So is it the situation that the ongoing task force groups that this plan has established means charities are going to continue attending those as their going forward actions & being polite so as to maintain a seat table et cetera, rather than being prepared to come out head on and stay the obvious that things are way below acceptable
 
Jonathan Edwards said:
I don't see any movement on funding from DHSC. The opportunity to fund drug repurposing has been on the table for several years now and there have been bids for trials. It is easy to say they have somemoney specially for this but people will still have to bid and may stillbe turned down. The Heritage thing is just a waste of public money. NIHR was always a window dressing exercise. Nothing has changed.

MRC had already moved. I don't know all the facts but it does look as if they were unsympathetic to competent projects in the past. I never thought much of MRC peer policy. Fiona Watt seemed to have no idea and Colin Blakemore was positively abusive about ME/CFS patients. But it is worth remembering that they set up an international search exercise to get ideas for good projects. Appropriate biomedical researchers were recruited and apart from some supporting a GWAS project there were essentially no suggestions other than some interests of the individual researchers. If there really were good projects out there the biomedical research community was very poor at articulating the needs. Now we have some ongoing funding in Edinburgh.

Why was there absolutely no mention in any of the Plan documents about specialist hospital clinical centres to build a research base? Were they asked for? If the DHSC were to 'get' anything it ought to be the need for these. I hear about various patient advocacy groups calling for things but did they recruit anyone medical who knew what was feasible and what was likely to make a difference? I get the impression not. Why is the whole thing shrouded in secrecy, as Cinders66 says? There more I hear the more this sounds like a sop rather than a plan. A PR exercise inherited from a previous minister that needed to be delivered in order to look sympathetic.
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Sfair it was included as part of the hub proposal that emerged from the RWG but this has not been taken up.

One of the challenges, I think in the earlier stages was the fragmented nature of the ME community and the lack of a united voice on solutions. Concessions were never going to be big in the economic climate and achieving compromise and consensus on the key asks is then even more difficult.

Government instability and loss of a senior sponsor through the process made things all the harder.

I agree that lack of transparency is far from ideal, unfortunately it's just how our political process functions.

It's a shame S4ME wasn't a member of FME to have had more visibility of the process and what was shared when.
 
www.medscape.com

After a Long Delay, ME/CFS Strategy Finally Arrives

The government has published its long-awaited plan for ME/CFS care, but patient groups warn it lacks the detail needed to deliver real change.
www.medscape.com www.medscape.com
Re the Medscape article on the plan that @Dolphin shared above, I think this is quite useful.

Medscape requires registration to access, but anyone can register. If you have time, I think it's worth having a look and, if you agree that it is useful, giving it a like. I think articles like that in places where medical professionals are help change attitudes over time.

Delays Sparked Criticism​

In February this year, Liberal Democrat health spokesperson Helen Morgan told The Times the plan represented an “opportunity to move away from this legacy of neglect towards a transformation of care and research.”

However, she noted that it had taken 33 months and five health secretaries to get to this point.

When the final plan was still unpublished last month, Morgan described the further delay as “inexcusable.”

People with ME and their carers had been “left behind for decades,” she said. “They have faced inadequate care, scant research funding, no treatments, and little hope of a better future.”
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Government Acknowledges Patient Concerns​

In the plan’s foreword, Minister for Public Health and Prevention Ashley Dalton acknowledged the inconsistency of care and the feeling among some patients that their condition had not been appropriately recognised by the health and care system.

“I know that those with severe or very severe ME/CFS, and their families and carers, have often felt particularly let down by those systems,” she said.

In a separate letter to members of the ME/CFS Task and Finish Group on the day of the final plan's launch, Dalton acknowledged: “People living with ME/CFS often face stigma and misunderstanding,” which she attributed to “a lack of awareness and education about the condition.”

The final plan includes a commitment to introduce new training for NHS healthcare professionals “as a priority” to address stigma and improve professional understanding.
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Calls for Strategic Commitment​

Action for ME also criticised the government for ignoring its calls for strategic research funding and a dedicated ME research hub.

Chief Executive Sonya Chowdhury said the plan was an “important step for the ME community, long overlooked and under-served.” However, she added “the plan must not be a token gesture — it requires a sustained, strategic commitment to care, funding, and research.”
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Hutan said:
Medscape requires registration to access, but anyone can register. If you have time, I think it's worth having a look and, if you agree that it is useful, giving it a like. I think articles like that in places where medical professionals are help change attitudes over time.
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I had a look. The problem is that this will be water off a duck's back for medics. They will have a quick look and think 'Yeah the government is trying to placate those ME people who think they have something wrong with them. Good luck to them, it won't bother us'.

How can you convince a medical profession with eductional materials that look as if they have been cobbled together from Pulse by a comms techie?

The BPS people are streetwise if nothing else and will see that this whole exercise has no content. How can you 'address stigma' with half-baked stuff that simply reinforce the belief that it is all make believe?

Sonya is doing her best and behind the scenes is getting real stuff done but the medics will see her as just the cheerleader for a lot of whiners, when they read this.

There has to be a different sort of story to make any impact whatever on the medical profession.
 
Jonathan Edwards said:
I had a look. The problem is that this will be water off a duck's back for medics. They will have a quick look and think 'Yeah the government is trying to placate those ME people who think they have something wrong with them. Good luck to them, it won't bother us'.

How can you convince a medical profession with eductional materials that look as if they have been cobbled together from Pulse by a comms techie?

The BPS people are streetwise if nothing else and will see that this whole exercise has no content. How can you 'address stigma' with half-baked stuff that simply reinforce the belief that it is all make believe?

Sonya is doing her best and behind the scenes is getting real stuff done but the medics will see her as just the cheerleader for a lot of whiners, when they read this.

There has to be a different sort of story to make any impact whatever on the medical profession.
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What sort of story would work, do you think ?
 
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