The HERITAGE study (Health Effects fRom Infection sequelae: Tailoring services and Advancing GuidancE)

Nightsong said:
Something I have thought for some time would be useful is if a supportive ME organisation brought together a group of people, including someone who understands the weeds of the NHS service commissioning processes, to thrash out what a decent ME/CFS service would look like in practice, & produce and publish a model & design for a novel service offering supportive medical care, including details of the tailoring such a service would require for the needs of severe & very severe patients.
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My main thought on that is, what happens if we find a good drug candidate in the next year or two? We seem to be closer than we've been before, and even if there could be a significant delay because strong initial trial results need replicating, it will have a major effect on the type of provision we'll need.

It's the difference between a treatable disease, for which there are various NHS models, and a disease with no treatment options, for which the usual practice is diagnose and discharge to GP.
 
Nightsong said:
Something I have thought for some time would be useful is if a supportive ME organisation brought together a group of people, including someone who understands the weeds of the NHS service commissioning processes, to thrash out what a decent ME/CFS service would look like in practice, & produce and publish a model & design for a novel service offering supportive medical care, including details of the tailoring such a service would require for the needs of severe & very severe patients.

Those on the other side of this already have their own such resources, including commissioning guidance for a network of generic MUS/PPS clinics (link) that came out of a process involving the RCs - and, of course, BACME's guides.

A few posters here have discussed over the years what a decent service might look like, but AFAIK there are no published alternative service designs or resources anywhere to be found. The major national charities seem all too happy to collaborate with whatever BACME & the NHS cook up.
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Is this not what @Suffolkres has been doing ?
 
Amw66 said:
Is this not what @Suffolkres has been doing ?
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I correct you. We have been trying to that very thing.
A model Spec
A model Pathway
The agreed contractual procurement time frame. 5 years
The agreed ring fenced money £5.4 million
An endorsed Co produced business plan
Preferred provider with suggested workforce model With suitablw clinical lead
Contractual award
Mobilisation
Handover
Service commencement .....
What could possibly go wrong...???
 
Suffolkres said:
I correct you. We have been trying to that very thing.
A model Spec
A model Pathway
The agreed contractual procurement time frame. 5 years
The agreed ring fenced money £5.4 million
An endorsed Co produced business plan
Preferred provider with suggested workforce model With suitablw clinical lead
Contractual award
Mobilisation
Handover
Service commencement .....
What could possibly go wrong...???
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Quite a lot.....!
 
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I was thinking more in terms of an academic/charity/informed patient type collaboration which produces a formal service specification & commissioning guidance that we can all point to, drop in front of ministers, MPs, & NHS service commissioners and say, collectively, "these are the kind of services that we want". A well-designed alternative to the snake oil that BACME are selling. Also, it could include a design for a potential future national-level service capable of handling very severe cases & which would work with serious biomedical researchers.

I don't think it would change anything if a drug therapy is discovered in the next few years. A good service design would account for that possibility.

At present I fear that the current push for a national-level specialist service for severe pwME will produce something along the same lines as NICPM, which would be catastrophically bad for us.

There is a lesson here, I think, from Norway, where patient campaigning led to the establishment of a "National Competence Service", which has been patient-hostile and which has produced a steady stream of psychobehavioural gibberish since its inception.
 
Nightsong said:
thrash out what a decent ME/CFS service would look like in practice, & produce and publish a model & design for a novel service offering supportive medical care
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The difficulty I see at present is that any decent model will be completely at odds with current UK government policy so will simply be ignored. We don't really even have a decent service model for other conditions now, although we did twenty five years ago.
 
Jonathan Edwards said:
The difficulty I see at present is that any decent model will be completely at odds with current UK government policy so will simply be ignored. We don't really even have a decent service model for other conditions now, although we did twenty five years ago.
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Does this actually present an opportunity - namely, to use ME/CFS set a new standard? (Serious question.)
 
Trish said:
Has anyone else looked at this? I have searched the autonom-e app and can't find anything about the Heritage study that is supposed to be on it.
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Yes, I've downloaded the app and got as far as the login page. I mainly wanted to find out whether the app will run on a laptop, for people who find mobile devices in accessible.

They passed that test (on Mac OS at least), but I'm too wilted to do any more with it right now.

Screenshot 2026-06-25 at 13.33.16.webp
 
I tried both the app version and the web version (Android, google app store, chrome book). Correspondence with the team advised me where to click on the screen by selecting my profile at the top left, but the menu that came up is missing the 'join a study' option. I've written back.
 
I cannot fin anything on the HERITAGE site that tells me what the surveys are actually going to survey or what the purpose is, or how they might be analysed.

Maybe if 1000 members here filled the surveys in it might have some impact on the 'result'. Goodness knows whether it would be worth the effort.
 
As far as I can see it's a bunch of questionnaires to fill in 5 times at 3 month intervals. It's only open to pwME and pwLC in the UK who have been sick for at least 2 years and are over 18. If you've attended a UK ME/CFS or LC clinic in the last 3 years, you can only take part if you've attended one of a list of 3 clinics as far as I can see.

If I manage to access it and get accepted to take part, I'll be able to tell you more.

There is also the option of 1 hour interviews to do in addition or instead.
 
This is how HERITAGE was described in the delivery plan:
DHSC and NIHR will commission the HERITAGE research project through NIHR Health Services and Delivery programme to look at the overlap between ME/CFS and long COVID, and explore costs and effectiveness of different existing healthcare models for both conditions
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Research to improve health and care services. The NIHR HSDR programme has funded a £1.4 million HERITAGE study, which will look at the overlap between ME/CFS and long COVID and explore the costs and effectiveness of different existing healthcare models for both conditions. This study aims to help improve the quality of care for both conditions by developing a national service framework (NSF) for long COVID and ME/CFS, which includes training and resources for specialist services and primary care across the UK.
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So the results are going to feed directly into DHSC/NHS England's development of a "national service framework" for ME/CFS & LC. Despite my substantial reservations about this project I think it's vital that they hear from well-informed patients, including those with experience of the existing psychobehavioural clinics.
 
This is the text from the next screen when you select the Autonom-e study:

Screenshot 2026-06-25 at 15.02.14.webp

Screenshot 2026-06-25 at 15.02.25.webp

Haven't got any further, as I lack the patience to approach it open-mindedly at the moment.

PS: I don't know what the Yorkshire Rehabilitation Scale is, but I don't like the sound of it.
 
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