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

Trish said:
Government plan to train doctors on ME/CFS “does not go far enough,” campaigners say (The BMJ, 28 July 2025)
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There's a rapid response to that BMJ piece from Edoardo Cervoni, Director, Locumdoctor4u Ltd. Southport

Excerpt:

Training healthcare professionals to recognise and manage ME/CFS is undoubtedly important, but it assumes a level of understanding that we do not yet possess. The proposed e-learning modules, whilst well-intentioned, risk disseminating incomplete or outdated knowledge if not grounded in cutting-edge research. Without a deeper understanding of the biological mechanisms driving ME/CFS, training may inadvertently perpetuate ineffective or even harmful practices.
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Instead, campaigners should prioritise advocating for increased funding and coordination of biomedical research to unravel the aetiology of ME/CFS, and findings to translate findings into diagnostic and therapeutic tools. Specialised research centres, staffed by experts in immunology, neurology, and metabolomics, are critical to this effort. These centres could foster interdisciplinary collaboration and accelerate discoveries, much like the approach taken in cancer research decades ago, which transformed outcomes through targeted investigation.
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He should join S4ME (unless he already has, under a pseudonym!)
 
Eleanor said:
There's a rapid response to that BMJ piece from Edoardo Cervoni, Director, Locumdoctor4u Ltd. Southport
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:heart:

Also love the acronyms.


Is anyone else disturbed every time they see 'Final Delivery Plan'? eg here on the government site and in that House of Commons briefing paper:
Policy paper

ME/CFS: the final delivery plan​

The final delivery plan on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), focusing on 3 main areas to improve care and support for those with ME/CFS.
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Why not just 'the delivery plan'? I keep thinking of 'final solution' and wondering if people think that this plan is the last word on what is needed to deal with ME/CFS. I know there was an interim plan, but, still.
 
I like the idea of dueling acronyms. Two can play that game. :devilish:
  • advice about how to make best use of the energy a person have without making their symptoms worse
  • cognitive behavioural therapy (CBT)
  • medicine to control symptoms such as pain and sleeping problems
1. Leaving aside the serious issue with the 'energy' terminology, on what evidentiary basis are they claiming sufficient knowledge and understanding to be able to offer us such advice, particularly given their track record?

2. Now they are just taking the piss.

3. Getting 1 out of 3 correct is appalling, and that 1 is just generic stuff covering all medical conditions.

An additional £1 billion a year to provide a new “pathways to work offer”​

And the funding for actual honest competent productive research to assist in getting us back to work will be...?

And thank you Edoardo Cervoni, Director, Locumdoctor4u Ltd. Southport.
 
Sean said:
And thank you Edoardo Cervoni, Director, Locumdoctor4u Ltd. Southport
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Good man. I see he has varied medical interests, but in 2001 he did an otology fellowship at Green Lane Hospital in Auckland. (Back when it was still a renowned hospital doing heart and lung transplants etc, before becoming an outpatient clinical centre. There were a few interestingly named buildings, like "Hearty Towers" where the transplant recipients would wait for a donor and recuperate afterwards, and the long disestablished "Infirmary Ward for Incurables" which sounds uncomfortably close to home now!)
 
There has been an email update sent out to, presumably, all 'involved' in the development of the Delivery Plan. Key points;

It is not entirely clear but it seems that either the name of the "Long-Term Conditions Team" at DHSC has changed to the "Neurological, Post-Infection and Inflammatory Conditions Team", or that responsibility for delivering actions from the Delivery Plan has moved from one team to another. The reason given is to "better reflect our policy portfolio".

Development of the template service specification for mild/moderate ME/CFS. "NHS England and DHSC have produced an initial draft of this template, which will be shared with the services sub-group soon. That sub-group, members of which kindly put themselves forward in the autumn, will meet later this month where members will have the opportunity to feed back on the current draft, and their input will be taken into careful consideration when finalising the template ready for publication."
 
Andy said:
It is not entirely clear but it seems that either the name of the "Long-Term Conditions Team" at DHSC has changed to the "Neurological, Post-Infection and Inflammatory Conditions Team", or that responsibility for delivering actions from the Delivery Plan has moved from one team to another. The reason given is to "better reflect our policy portfolio".
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My reading of the email was that this is a name change for the same group, whose real name is 'Dumping ground for those who have nothing much wrong for ages and need a "special service" to keep them at arms length Team'. Neither name makes any real sense but the new one sounds more sympathetic and scientific, even if it isn't either.
 
Andy said:
Development of the template service specification for mild/moderate ME/CFS. "NHS England and DHSC have produced an initial draft of this template, which will be shared with the services sub-group soon.
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What an appalling waste of time. Still nothing about severe and very severe ME/CFS. I wonder whether there is any other condition where the sickest are ignored completely by the NHS while they fiddle around with endless committees reinventing inappropriate rehab programs.
 
Trish said:
What an appalling waste of time.
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Last year I was offered the opportunity to be involved in these further efforts. My lack of capacity meant it was a non-starter in the first place for me, but even if I did have the capacity, the lack of interest and respect for the patient voice that I saw in previous meetings would have meant that I would have turned it down for being, as you say, an appalling waste of my time, and energy.
Trish said:
Still nothing about severe and very severe ME/CFS.
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To be fair this is an update on one specific point. "Wider developments" are hinted at but no specifics are given, so they might perhaps include care provision for severe and very severe, I'm unable to tell.
 
Andy said:
To be fair this is an update on one specific point. "Wider developments" are hinted at but no specifics are given, so they might perhaps include care provision for severe and very severe, I'm unable to tell.
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That nobody can tell, tells us a lot. It shouldn’t be a topic that is unclear.

Thanks for the updates though and well put @Trish I don’t know of any other such severe condition treated with such wilful disdain (there obviously has been in the past but we seem to be the main one now).
 
Andy said:
To be fair this is an update on one specific point. "Wider developments" are hinted at but no specifics are given, so they might perhaps include care provision for severe and very severe, I'm unable to tell.
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My information when first re-joining the process recently was that there was no point in asking for severe services because they were not going to happen. I am hoping that position has changed.
 
Jonathan Edwards said:
My information when first re-joining the process recently was that there was no point in asking for severe services because they were not going to happen. I am hoping that position has changed.
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There is absolutely no way that any claim to care about a condition can stand up to examination when it is policy not to care for the most severe cases.

As someone who is severe because of the govt/NHS approach to MECFS, I find it utterly repulsive that still they refuse to provide any service for severe people. They will give other reasons but to me it feels like a cowardly squeamish refusual to face the consequences of their actions.
 
Kitty said:
...that risk ensuring more people join the sickest group.

:rolleyes:
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Bordering on guaranteeing it.
V.R.T. said:
There is absolutely no way that any claim to care about a condition can stand up to examination when it is policy not to care for the most severe cases.

As someone who is severe because of the govt/NHS approach to MECFS, I find it utterly repulsive that still they refuse to provide any service for severe people. They will give other reasons but to me it feels like a cowardly squeamish refusual to face the consequences of their actions.
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Cowardice is a word that should be used more to describe what is going on.
 
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