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

tornandfrayed said:
the HERITAGE study (Health Effects fRom Infection sequelae: Tailoring services and Advancing GuidancE), a new £1.4 million NIHR research programme, which will explore the cost effectiveness of existing healthcare models for both ME/CFS and long COVID with the aim of improving quality of care.

What's the point of this? We know they are crap. Chris and his team could do a lot with that money.
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This is where they do a formal review and recommend bringing in app-based care. Oh look! An app has just been developed by Elaros!
 
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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I think that is a very good question - and I don't have an answer. I think I saw some analysis suggesting a few different things. What may be more interesting is with Decode results suggesting certain genes whether that could be translated into potential targets,

My feeling is that LDN may help some but not that many which could make trials difficult.

Drug repurposing was one of the top 10 that came out of the JLA process, but I also think its something that fits into the NIHR remit and so its something the DHSC can do. Where as the discovery research comes under the MRC who I would say just aren't interested - they are a funding club who fund current research groups and have no notion of targeting research at the big problems.
 
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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OMF is already doing a trial on LDN. I wouldn't mind seeing a trial on LDA though.

Daratumumab could also use some funding.

Edit: to be clear though, I agree, we need leads first.
 
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MrMagoo said:
This is where they do a formal review and recommend bringing in app-based care. Oh look! An app has just been developed by Elaros!
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Now we're cooking!

Honestly I really don't see the point in all the supposed ME/CFS "care" anyways. People just need to be diagnosed, get disability, home care (if necessary) and nutritional support in extreme cases. Trying to offer anything else just deludes doctors and public officials into thinking they can treat this disease. They can't. And the thing is, none of the above is very unique about ME/CFS. It's just basic healthcare. Like I just can't believe doctors aren't willing to give nutritional support to patiens that are literally starving. The reason for them starving is irrelevant. It's just basic triage. You have failed as a doctor.

Maybe I'm biased because I'm severe but I feel like more/better research should be the main focus.
 
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Jesse said:
Now we're cooking!

Honestly I really don't see the point in all the supposed ME/CFS "care" anyways. People just need to be diagnosed, get disability, home care (if necessary) and nutritional support in extreme cases. Trying to offer anything else just deludes doctors and public officials into thinking they can treat this disease. They can't. And the thing is, none of the above is very unique about ME/CFS. It's just basic healthcare. Like I just can't believe doctors aren't willing to give nutritional support to patiens that are literally starving. The reason for them starving is irrelevant. It's just basic triage. You have failed as a doctor.

Maybe I'm biased because I'm severe but I feel like more/better research should be the main focus.
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I disagree, I think severe and complex cases benefit from drs building up expertise and specialising. Tragic cases deserve support in off label medicine and I also think m,e clinics should be offering OI & POTS diagnosis and care. Eg my m.e is associated with an inability to relax my muscles, there may be some meds that are more m.e friendly than others, expertise doesn’t get built up with gps dabbling around or more often, refusing to prescribe anything
 
Cinders66 said:
I disagree, I think severe and complex cases benefit from drs building up expertise and specialising. Tragic cases deserve support in off label medicine and I also think m,e clinics should be offering OI & POTS diagnosis and care. Eg my m.e is associated with an inability to relax my muscles, there may be some meds that are more m.e friendly than others, expertise doesn’t get built up with gps dabbling around or more often, refusing to prescribe anything
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I'm not against it I just think effects will be marginal. We know there's some drugs that slightly help people with symptoms. And small improvements are a big deal for people with ME/CFS. But I'm not convinced we need specalists just to prescribe beta blockers, sleep meds or LDN or whatever. I'm also not convinced that whatever expertise they will be able to build up will significantly exceed what we know today.

Obviously it does become a lot more interesting if it's directly tied to research initiatives.
 
Jesse said:
Now we're cooking!

Honestly I really don't see the point in all the supposed ME/CFS "care" anyways. People just need to be diagnosed, get disability, home care (if necessary) and nutritional support in extreme cases. Trying to offer anything else just deludes doctors and public officials into thinking they can treat this disease. They can't. And the thing is, none of the above is very unique about ME/CFS. It's just basic healthcare. Like I just can't believe doctors aren't willing to give nutritional support to patiens that are literally starving. The reason for them starving is irrelevant. It's just basic triage. You have failed as a doctor.

Maybe I'm biased because I'm severe but I feel like more/better research should be the main focus.
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Ah well worry not!

Instead of not getting any help, the app means that you need to read/monitor/answer questions/communicate with an OT with any questions.
Then all of that data is used to prove the NHS has been providing you with care successfully!*
Another bonus will be that the NHS can compare this success with previous care (aka no care) making this an extremely successful project.

*You might be a bit more tired with no actual beneficial outcomes, sorry about that.
 
Jesse said:
Honestly I really don't see the point in all the supposed ME/CFS "care" anyways. People just need to be diagnosed, get disability, home care (if necessary) and nutritional support in extreme cases.
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I would have been great if the plan was actually committing to doing this much, but I see nothing in there that suggests they understand these things are what is necessary. The fact it contains no fixes to the research problem and funding is really what damns the plan and the patients with it.
 
RCP will, for now, rely on NHS England’s e-learning modules, which are considered suitable by RCP
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A subtle shift in position?
The Royal College of General Practitioners, the Chartered Society of Physiotherapy and the Royal College of Occupational Therapists agreed to share and promote NHS England’s e- learning modules. DHSC will continue to reach out to networks including the Royal College of Nursing to promote NHS England’s e-learning modules
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Not sure if this implies that RCN & others have refused, or that DHSC just hasn't approached them.
The previous IDP action ‘NHS England will develop an e-learning module on ME/CFS, which will be aimed at health and social care professionals and available to members of the public’ has been updated to include an additional 2 modules, covering:
* primary care, which has universal access
* severe ME/CFS (which includes both severe and very severe ME/CFS), access to which will be limited to users with NHS, GOV, and ac.uk email addresses
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Restricting access and keeping the module's contents from (most) patients will only inspire further mistrust. Not sure why they're doing this.
 
Jonathan Edwards said:
If and when we have clear leads there are obvious people to be interested. Not necessarily clinicians but there are some with links to rheumatology.
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My hope is that if there are clear leads, we can use the contacts gained through developing this delivery plan to really emphasize the need to follow up DecodeME leads. People want to be winners, and to be seen taking action. If we have specific targets that make sense, everyone becomes a winner, and it is easier to say yes.

A SMART story is much easier to get behind. Specific, Measurable, Achievable, Relevant, and Time-bound.
 
Nightsong said:
A subtle shift in position?

Not sure if this implies that RCN & others have refused, or that DHSC just hasn't approached them.

Restricting access and keeping the module's contents from (most) patients will only inspire further mistrust. Not sure why they're doing this.
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Why would they restrict access to contents of the education module about severe and very severe patients? Does anyone know why they would do this? Are there other examples like this? :(
 
Jonathan Edwards said:
The government plan goes in the wrong direction. But the logistics of going in the right direction may be quite complex. When I knew Chris and Sonya were trying to set up PRIME I said that a clinical facility should be included but after some thought decided it would probably be premature. There need to be really good academic clinicians wanting to run such services. I hope that will come soon but just at the moment there are no very obvious candidates practicing in the UK.
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'There need to be really good academic clinicians wanting to run such services. I hope that will come soon but just at the moment there are no very obvious candidates practicing in the UK....'

Yet! Praying hard. Preparing for disappointments, that is ME and D.. Suffolk Persona non gratas.....

Let's all pray for Suffolk and NE Essex area....come 1st August.....

I can still turn up at Board meetings however, with my 5 minute questions... unannounced! And I do!...
 
Nightsong said:
A subtle shift in position?

Not sure if this implies that RCN & others have refused, or that DHSC just hasn't approached them.

Restricting access and keeping the module's contents from (most) patients will only inspire further mistrust. Not sure why they're doing this.
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I thought NHS England was abolished earlier this year?
www.bbc.co.uk

What does NHS England do? And why is it being abolished?

As part of Your Voice, Your BBC, we answer questions from you on government plans to scrap NHS England.
www.bbc.co.uk www.bbc.co.uk
 
rvallee said:
I think there's a typo here. It should read "GPs to obstruct delivery of ME/CFS care under new plan". Notable that it's filed under "mental health, pain and addiction". Of course.
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Some comments on the Pulse article —

Scottish GP said:
Perhaps they should chuck in FND, fibro and long COVID as well. These are all Medically Unexplained Symptoms and are more in keeping with social, emotional and financial misery than medicine.
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Sujoy Biswas said:
Wouldn’t touch it with a bargepole. CFS ME Fibromentalgia MIgrainitis all end up with multiple Ix, we work them up anyway. I’d say take them completely out of primary care.
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