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

I have mixed feelings on what I’ve seen so far

Positive take
If this is the start of something there are positive signs. Recognition that there are problems and lack of understanding and talk of foundations shows a desire to improve things and seems to indicate this is only the start of a process which will hopefully evolve and improve. There is an opportunity to build on this and hopefully government will do so seriously.

Less positive take
If this is the best that you can do after 3 years and that it’s been slipped out with a pretty shoddy press release on the last day of parliament is not a great sign. It doesn’t show the recognition of quite how bad things are for patients or that services aren’t just not delivering the support they should but do us more harm than good. To overcome this is going to take significant effort. And this just doesn’t look to have that level of ambition or fight in it.
 
Hutan said:
From the Easy Read version of the plan:
View attachment 27217
There are a number of plans to involve people with experience of ME/CFS in the development of materials. I guess that is one reason for Sonya at AfME to not get too carried away with criticism.

View attachment 27221


More research isn't in the '6 main areas that need to change to improve the lives of everyone with ME/CFS'. It is mentioned elsewhere, but this is an odd way to present things. I think funding good research is the main way to get improvements. Check out the wording on item 2 below. From this easy read guide, it appears that child labour is a key part of the UK Delivery Plan! Another of the six items is about adults with ME/CFS getting jobs.

View attachment 27222
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They still hav3e not released the plan. So is this new or is this an old version? I was given a 2023 version which showed that the research has to be fair for all (who are the all ? the likes of SW?) and does not bode well for improvement in research which then means no provision of services.
 
“The plan includes increased funding for research, awarded through the National Institute for Health and Care Research, into how existing medicines can be used to for ME/CFS. This initiative aims to give patients access to a wider range of potential treatments.”%

I can’t believe they’re trying to pass this off as a decent or fair response to 20+ years of failure, neglect and the nhs pushing many into lasting moderate or severe disability, some from a very young age. Cobbled together last minute to provide a shiny something rather than the nothing. But there was no organised and clear calls for specific fair funding from charities….
 
Tilly said:
They still hav3e not released the plan. So is this new or is this an old version? I was given a 2023 version which showed that the research has to be fair for all (who are the all ? the likes of SW?) and does not bode well for improvement in research which then means no provision of services.
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Oh, apologies. I thought they had released the easy read version but not the actual plan. I have deleted my post.
 
After what we saw as the draft over a year ago and the comments being made I am expecting to be very angry today. I didn't expect much, we are going to loose our lives rotting to this disease while everyone does nothing to help us as millions before us have also done so. This is not the government that is going to change that.
 
Cinders66 said:
Apparently they were gonna put out the headline chronic fatigue in press release but the association told them they had to add on the word syndrome. Can you believe it? They actually had consultancy about inappropriate language and they were gonna call it chronic fatigue
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Given the government teams involved and their awareness of the issues and language this surprises me.
 
hotblack said:
I have mixed feelings on what I’ve seen so far

Positive take
If this is the start of something there are positive signs. Recognition that there are problems and lack of understanding and talk of foundations shows a desire to improve things and seems to indicate this is only the start of a process which will hopefully evolve and improve. There is an opportunity to build on this and hopefully government will do so seriously.

Less positive take
If this is the best that you can do after 3 years and that it’s been slipped out with a pretty shoddy press release on the last day of parliament is not a great sign. It doesn’t show the recognition of quite how bad things are for patients or that services aren’t just not delivering the support they should but do us more harm than good. To overcome this is going to take significant effort. And this just doesn’t look to have that level of ambition or fight in it.
Click to expand...

My impression as someone who has been involved in the process is that there has been a positive shift in attitudes within the DHSC and those involved understand lots of the issues and there are some positive actions. Things like having new training courses and questions in medical exams can make a real difference.

On the less positive side there is no money and whilst the DHSC teams developed an understanding of the issues the spread across multiple government departments, and this has been much more challenging in terms of getting buy in and action. I think this is show in research for example where the DHSC through the NIHR are looking at drug repurposing trials but the MRC contributions are minimal. This was reflected also in calls for a research hub (which were discussed on a different threat) to build research capacity into ME but were ignored as part of this process.

I say this without having read the document although I read a draft about a month ago. So I've not seen the actions related to DfE and DWP.
 
Adrian said:
My impression as someone who has been involved in the process is that there has been a positive shift in attitudes within the DHSC and those involved understand lots of the issues and there are some positive actions. Things like having new training courses and questions in medical exams can make a real difference.
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Thanks Adrian. This is all a very useful perspective.
 
Daisy said:
The MEA have put up a piece about the press release:
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“The Delivery plan has been published, however, the Department of Health and Social Care (DHSC) has so far failed to provide a link to the actual Plan!”


Typos in the press release. Failure to provide a link to the Plan. No strategic approach to advance research. No commitment to funding etc.

It’s almost like they don’t give a ****
 
Press release

"Boost in support for patients with chronic fatigue syndrome or ME​

Better care for patients living with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, with plans to invest in research and offer closer to home."

The first sentence of the press release " invest in research and offer closer to home". What are they offering closer to home? Treatments, care, research? An utter shambles.


The title of the press release is confusing. Chronic fatigue syndrome or ME in the title suggesting two different conditions. Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome in the first line of the content implying one condition. Hopeless.
 
hotblack said:
Positive take
If this is the start of something there are positive signs.
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It clearly is not the start of anything. It is a way to wash hands of a problem.

Realistic take
The overwhelming feature of this report is its dishonesty - claiming to provide care and progress when what it recommends is worse than useless. I find it hard to understand how anyone involved with a genuine interest in improving care can have signed off on this. It is literally 'being in the tent and pissing out on the patient community'.

And it is written by people who have no notion about what it is they are writing about.

The only positive aspect is that we knew it was going to be this and real progress will occur for reasons that have nothing to do with government policy.
 
Adrian said:
Things like having new training courses and questions in medical exams can make a real difference.
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Yes, but they can make things worse by feeding medical students a new version of the BPS garbage based on 'functional disorders', which is precisely what will happen because that is what the medical profession currently believe in.

It seems clear that whoever was involved in this there was not a single physician with any understanding of ME/CFS. They don't even get the name right.
 
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