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

Sasha

Sasha

Senior Member (Voting Rights)
Just stumbled across a mention of this HERITAGE study in David Tuller's interview with Charles Shepherd on the UK government's Delivery Plan for ME/CFS, and we don't seem to have a thread for it. This government website says:

In addition to increasing support for ME/CFS researchers to submit successful applications to MRC and NIHR, we are pleased to announce 2 new research investments and a new funding call relevant for ME/CFS research:​
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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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[...]​
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HERITAGE study (Health Effects fRom Infection sequelae: Tailoring services and Advancing GuidancE), a £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.​
 
Ironically, the level of general ignorance and hostility towards pwME and pwLC in the NHS in general will make the specialist services look better in contrast. The bare minimum feels like generosity when elsewhere you've only been met with a kick and a spit.
 
People struggle to understand that no provision can be better than some provision for a lot of people. Until education has caught up and harms are accurately recorded specialist provision dosn't count for much at all.
There is no acceptable basis to work up from as exists at the moment.
 
Amw66 said:
People struggle to understand that no provision can be better than some provision for a lot of people. Until education has caught up and harms are accurately recorded specialist provision dosn't count for much at all.
There is no acceptable basis to work up from as exists at the moment.
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That’s what I’ve been trying to say to the people that try to keep the rehab clinics open. I understand that you want healthcare, but this healthcare won’t help you. All healthcare isn’t equal.
 
Kitty said:
It's by definition a waste of money too. Hopefully the review will say so; I doubt it would have been set up unless the government was looking to cut the clinics.
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I don't think the government wants to cut this sort of thing. Mr Starmer is very keen for everyone to be able to see a physio at once without messing about with waiting for doctors and to do it in a shed in your neighbourhood rather than a hospital. That will prevent cancer, heart disease, suicide, obesity and motor neuron disease and all other causes of death at a stroke, so hospitals can be shut down completely.
 
Kitty said:
It's by definition a waste of money too. Hopefully the review will say so; I doubt it would have been set up unless the government was looking to cut the clinics.
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I’d tend to agree. There’s a few areas where reviews seem to be being put into place in the hope it will be easier to do what they want or know they need to do once the review reports. It’s not pretty and is pretty wasteful in itself. But that’s politics.
 
The HERITAGE programme is nothing but a cost saving exercise, writing a new National Service plan and education materials. This man is an Emeritus Senior Investigator at the NIHR.

Professor Sir Simon Wessely GBE | NIHR [accessed 30 July 2025]

Senior Investigator​

Professor Sir Simon Wessely is an NIHR Emeritus Senior Investigator.

Simon is Regius Professor of Psychiatry at King’s College London. His research focuses on occupational mental health, including the health of the Armed Forces and the NHS workforce. He was awarded a Knight Grand Cross of the Order of the British Empire (GBE) for services to mental health in the King's Birthday Honours 2025.
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I rest my case.
 
Haven't been able to look into it in detail but in my search alerts yesterday there was a job ad in BMJ that sheds some light on what HERITAGE is all about & who is involved:

Link

They're looking for a research fellow to:

support the HERITAGE NIHR grant activities i.e. supporting all activities related to the use of mixed-method research and engagement of front-line clinicians and patients, to improve care of LC: a) in specialist clinics, b) by patients at home and c) in primary care. The work comprises of three work streams plus PPI/E:

o WORK STREAM I: Exploring the diagnostic overlap between LC and ME/CFS, condition trajectories and long-term clinical outcomes in both conditions
o WORK STREAM II: Evaluating the cost-effectiveness of alternative service models for LC and ME/CFS
o WORK STREAM III: Improving quality of care for LC and developing a national service framework for LC and ME/CFS
o PPI/E: Individuals with lived experience of LC and ME/CFS have contributed to proposal design and will remain actively involved in all aspects of study through on-going co-creation

National service framework for ME/CFS, designed by a group of rehabilitationists - what could go wrong?
 
There is an urgent need for health services research and developing a National Service Framework that will improve care in existing services and effectively reduce the overall costs to the NHS and the UK economy. The £1.4 million NIHR HERITAGE project (Health Effects from Infection sequelae: Tailoring services and Advancing Guidance) project aims to address these needs.
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They want to improve things by doing the same things that have failed miserably for decades, yet again totally exposed as a sham with Long Covid, the same way for the same reasons expecting the same imaginary outcomes that have never materialized. Might as well bash my head on a brick wall and expect a chicken dinner out of it.
 
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