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

[Sasha]

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.​

 

[Jonathan Edwards]

And the government thinks this is a jewel in the crown of the 'plan'?
How do you explore the effectiveness of healthcare models without trials?
This is the pits.

 

[Peter T]

And the government thinks this is a jewel in the crown of the 'plan'?
How do you explore the effectiveness of healthcare models without trials?
This is the pits.

The worry is that ‘they’ just ask the current service providers who advocate for more of the same.

 

[NelliePledge]

The worry is that ‘they’ just ask the current service providers who advocate for more of the same.

Likelihood

 

[Trish]

This study is mentioned in several posts on the thread about the UK government delivery plan:
https://www.s4me.info/threads/uk-go...fs-published-22nd-july-2025.45222/post-626239

 

[Trish]

I can't find out anything about who is going to do this research. If it's the usual rehab people it will be a disaster.

 

[Utsikt]

NIHR174857 Health Effects fRom Infection sequelae: Tailoring services and Advancing GuidancE (HERITAGE)

• Chair: Kathy Rowan
• Declared a conflict and left the room: Enya Daynes, Lisa Hinton, Greg Irving, Dimitrios Koutoukidis, Jason Madan, Christina Pagel
• Decision: Fund with changes

https://www.nihr.ac.uk/health-and-social-care-delivery-research-hsdr-programme-funding-committee-minutes-14-15-may-2025

 

[Jonathan Edwards]

The worry is that ‘they’ just ask the current service providers who advocate for more of the same.

It will be. That is what the project is on - current existing models.
This is always what NIHR was for - to window dress politically convenient aspects of service.

 

[Eleanor]

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.

 

[Amw66]

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.

 

[Utsikt]

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.

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]

Until education has caught up and harms are accurately recorded specialist provision dosn't count for much at all.

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.

 

[Jonathan Edwards]

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.

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.

 

[hotblack]

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.

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.

 

[Maat]

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.

I rest my case.