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

I've searched the forum but can't find a thread on this service evaluation of FND published May this year. Is there one, or any discussion on it in another thread?

Inpatient Neurorehabilitation Benefits Patients with Functional Neurological Disorder: A Single Centre Study​



Ibraheem W, Jackson M, Palser T, et al. Inpatient Neurorehabilitation Benefits Patients with Functional Neurological Disorder: A Single Centre Study. Advances in Rehabilitation Science and Practice. 2026;15. doi:10.1177/27536351261441399

The et al includes Manoj Sivan.

Edit to working link to study. https://journals.sagepub.com/doi/10.1177/27536351261441399#con1
 
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I've searched the forum but can't find a thread on this service evaluation of FND published May this year. Is there one, or any discussion on it in another thread?

Inpatient Neurorehabilitation Benefits Patients with Functional Neurological Disorder: A Single Centre Study​



Ibraheem W, Jackson M, Palser T, et al. Inpatient Neurorehabilitation Benefits Patients with Functional Neurological Disorder: A Single Centre Study. Advances in Rehabilitation Science and Practice. 2026;15. doi:10.1177/27536351261441399

The et al includes Manoj Sivan.

Edit to working link to study. https://journals.sagepub.com/doi/10.1177/27536351261441399#con1
Thanks, I created a thread here:
Inpatient Neurorehabilitation Benefits Patients with Functional Neurological Disorder: A Single Centre Study, 2026, Ibraheem, Manoj et al.
 
Last month MEA put out some additional information about HERITAGE:
HERITAGE will be collecting patient experiences from two sources:

People who have attended Long Covid clinics and/or ME/CFS specialist services in Cornwall, Leeds, Leicester, and Hertfordshire during the last 3 years (the clinical cohort).
People who have not attended a Long Covid clinic or ME/CFS specialist service anywhere in the UK during the last 3 years (the non-clinical cohort).
So the "clinical cohort" is to be derived from a relatively small group of patients attending a very small number of (no doubt carefully chosen) clinics within the last 3 years. The "non-clinical cohort" is everyone else, no matter which clinics they've attended in the past or which models of "care" they've been subjected to.

If there is a baked-in assumption that only "rehab" should be on offer then this is not genuine research: it is a purely political project designed to give DHSC/NHSE the answer that they want. They'll probably find that the experiences of patients in their "clinical cohort" were better than those in the "non-clinical cohort", and leap to the conclusion that their particular brand of rehab-based clinics should be rolled out nationwide.

This is something that bubbled out of the "delivery plan"; it was even announced there. A rehab-based model has no genuine evidence base and is not something that patients want or need, yet NIHR awarded £1,389,206.23 of public money to Sivan & his team for this - imagine what good that could've done if it were spent on following up the genetic leads or setting up genuine services.

And DHSC are going to use it as the evidence base for service commissioning. Has anyone pointed out to the politicians & civil servants that a study of "tailored inpatient rehabilitation" - far more intensive than the usual group course full of drivel delivered by a random psychologist - was a null result?

I hope people contact their MPs to lambast DHSC's attempt to force unevidenced, unnecessary, unwanted & unneeded "rehab" on us all rather than provide us with genuine supportive care. It needs to be strongly opposed & lobbied against. It will make things even worse than they already are.
 
So the "clinical cohort" is to be derived from a relatively small group of patients attending a very small number of (no doubt carefully chosen) clinics within the last 3 years. The "non-clinical cohort" is everyone else, no matter which clinics they've attended in the past or which models of "care" they've been subjected to.

If there is a baked-in assumption that only "rehab" should be on offer then this is not genuine research: it is a purely political project designed to give DHSC/NHSE the answer that they want. They'll probably find that the experiences of patients in their "clinical cohort" were better than those in the "non-clinical cohort", and leap to the conclusion that their particular brand of rehab-based clinics should be rolled out nationwide.
Yup. And why choose the last three years in particular bearing in mind the "Advancing Guidance" element in HERITAGE?

No thread of continuity. whatsoever linking it to this in 2023 with the longest list of conflict of interest in history.

Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis
Peter White et al. J Neurol Neurosurg Psychiatry. 2023 Dec.

 
NHS launches 40 ‘long COVID’ clinics to tackle persistent symptoms
15 November 2020
Long term conditions


Reproduced in full below for when NHS England no longer exists.

The NHS will launch a network of more than 40 ‘long COVID’ specialist clinics within weeks to help thousands of patients suffering debilitating effects of the virus months after being infected.

The clinics, due to start opening at the end of November, will bring together doctors, nurses, therapist and other NHS staff to physical and psychological assessments of those experiencing enduring symptoms.

The condition, which is thought to affect more than 60,000 people in the UK, can cause continuing fatigue, brain fog, breathlessness and pain.

NHS England has provided £10 million to fund the pioneering clinics, which will see patients who have been hospitalised, officially diagnosed after a test or reasonably believe they had COVID-19.

Ten sites have been earmarked for the Midlands, seven in the North East, six in the East of England, South West and South East respectively, five in London and three in the North West.

Patients will be able to access services through a GP referral or referral from other healthcare professional, allowing doctors an opportunity to rule out any other possible underlying causes for symptoms, such as suspected stroke, lung cancers or respiratory conditions.

The NHS has also launched a new taskforce, with patients, charities, researchers and clinicians, to help manage the NHS approach to ‘long COVID’ and produce information and support materials for patients and healthcare professionals to develop a wider understanding of the condition.

NHS Chief Executive Sir Simon Stevens said: “Long COVID is already having a very serious impact on many people’s lives and could well go on to affect hundreds of thousands.

“That is why, while treating rising numbers of patients who are sick with the virus and many more who do not have it, the NHS is taking action to address those suffering ongoing health issues.

“These pioneering ‘long COVID’ clinics will help address the very real problems being faced by patients today while the taskforce will help the NHS develop a greater understanding of the lasting effects of coronavirus.”

A study from King’s College London found that older people, women and those with a greater number of different symptoms in the first week of their illness were more likely to develop long COVID with one in 10 still unable to shake off the side effects eight weeks after infection.

More recent evidence is also showing that long COVID can be categorised into four different syndromes: post intensive care syndrome, post viral fatigue syndrome, permanent organ damage and long term COVID syndrome
All from the ME/CFS Delivery Plan
 
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How is this not the PACE trial through the backdoor but without the need for ethics committee oversight, with HERITAGE being service evaluation?

Is therapeutic privilege being used wholesale when obtaining informed consent without disclosing widely reported harms.

Supported by DHSC and DWP.


Here's the HERITAGE link

Built on the award-winning, NHS recommended digital platform, C19-YRS, for the remote assessment, triage, monitoring, management, rehabilitation and research of a range of conditions.

Download the app for free from the app store

Complete the gold standard C19-YRS Long Covid assessment

Complete the popular FUNCAP27 tool, validated in ME/CFS

Track symptoms, exertion, and goals each day with our diaries

Share health reports with clinicians or your employer

Access translatable support resources produced by health organisations and charities

Contribute your data to University of Leeds as part of the NIHR-funded HERITAGE project to advance clinical services for Long Covid and ME/CFS

Developed with the NHS, available worldwide for clinical, research, or personal use.


Sorry if this is duplicating points already raised as I haven't read every post
 
Zooming out to the bigger picture the HERITAGE service evaluation and ELAROS now appear to form part of is this


Little to do with delivering anything specifically for ME/CFS in any plan, and much more to with 'holistic biopsychosocial' approach to ill health and disability, and reducing the benefits bill by getting everyone back to work.

As per effing usual.

And so we regress to 2004.

Here's an updated version of the story as it now affects also LC patients.


Both are long reads unfortunately which I'm now currently unable to pick out quotes from.
 
If there is a baked-in assumption that only "rehab" should be on offer then this is not genuine research: it is a purely political project designed to give DHSC/NHSE the answer that they want. They'll probably find that the experiences of patients in their "clinical cohort" were better than those in the "non-clinical cohort", and leap to the conclusion that their particular brand of rehab-based clinics should be rolled out nationwide.

This is something that bubbled out of the "delivery plan"; it was even announced there. A rehab-based model has no genuine evidence base and is not something that patients want or need, yet NIHR awarded £1,389,206.23 of public money to Sivan & his team for this
The following quotes are from the ME/CFS Final Delivery Plan. They highlight the relationship to the Workwell Prospectus:

I know that people with ME/CFS, their families and carers have waited a long time for a new national delivery plan - some would say too long - and I was very keen that we published it now, on the back of the recently published 10 Year Health Plan, which sets out our vision for the NHS of the future, so that we and partners can start to turn much needed actions into practice. I acknowledge that some of the actions we set out in this final delivery plan will require further exploration, scoping and discussion post-publication, but I and the department, as well as other parts of government and the NHS, are happy to be held to account by the ME/CFS community, including those with lived experience, to ensure that we make progress against every action.

The Department for Science and Technology (DSIT) invests significantly in research through UKRI. MRC, a research council within UKRI, aims to improve human health and drive economic growth through:

an understanding of the underlying mechanisms of biology and disease
enabling earlier diagnosis
advanced therapies
precision prevention
HERITAGE funding
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.

Purpose

To maximise the impact of the research we fund, we will work closely with policymakers and the NHS to ensure that learnings from research are translated into policy and practice.

Under the section titled Attitudes and Education here we can see where ELAROS and HERITAGE come together and form part of the bigger picture with the Workwell Prospectus. ELAROS is designed for age 16+. and was launched June 2021.

DHSC and DWP (where appropriate) will work with stakeholders to disseminate information and guidance to increase awareness of support available and how to access it among all disabled people, people with health conditions, employers and relevant organisations
And I haven't re-read the whole FDP yet!
 
Action for ME on their Instagram.

OCRed poster:

​
Have you had Long COVID or ME/CFS​
for over 2 years?​
Help shape how the NHS supports people with Long COVID and ME/CFS​
We want to hear from adults (18+) across the UK who:​
• Have Long COVID and/or Myalgic Encephalomyelitis/Chronic​
Fatigue Syndrome symptoms lasting 2+ years​
• Are not currently receiving specialist NHS Long COVID or ME/CFS care​
For more information, please:​
Visit our website:​





Funnily enough they are distancing themselves from the study in the poster description:


​
The HERITAGE study is looking to recruit participants who have ME/CFS or long Covid who have not accessed an NHS specialist service within the last two years.​
​
Find out more about this latest project to see if you want to participate​
​
​
Please note, Action for ME is not involved in this study, and sharing it isn’t an endorsement. We’re passing it on so you can decide for yourself whether to take part.​

 
Action for ME on their Instagram.

OCRed poster:

​
Have you had Long COVID or ME/CFS​
for over 2 years?​
Help shape how the NHS supports people with Long COVID and ME/CFS​
We want to hear from adults (18+) across the UK who:​
• Have Long COVID and/or Myalgic Encephalomyelitis/Chronic​
Fatigue Syndrome symptoms lasting 2+ years​
• Are not currently receiving specialist NHS Long COVID or ME/CFS care​
For more information, please:​
Visit our website:​





Funnily enough they are distancing themselves from the study in the poster description:


​
The HERITAGE study is looking to recruit participants who have ME/CFS or long Covid who have not accessed an NHS specialist service within the last two years.​
​
Find out more about this latest project to see if you want to participate​
​
​
Please note, Action for ME is not involved in this study, and sharing it isn’t an endorsement. We’re passing it on so you can decide for yourself whether to take part.​

That’s a standard disclaimer these days
 
fb post from ActionforME on the Heritage study recruitment - tho somewhere in their speil they note sharing it isn't an endorsement from them:



I will paste the text at the bottom for those not on fb,

but wanted to highlight it is worth people looking at this post because of the comments. They are interesting. At some point Russell FLeming (who is MEA rather than AfME) is in there clarifying the study (please remove if its not OK to re-post):

Heritage is currently recruiting its 'non clinical cohort'. This means we want to hear from you if you haven't attended a specialist service anywhere in the UK in the last 3 years. We need 1,000 people. The 'clinical' cohort is recruiting separately from the 4 named ME/CFS/LC specialist sites.
Many thanks
Russell (PAG)

I haven't read back thru this thread yet to know whether we were aware that he, Russell Fleming is in the PAG for Heritage?

I note there was a post on the MEA fb where their study was being billed as being 'led by patients for patients' with I guess those patients being him and Sarah Tyson.


A defining feature of this project is that it has been led by — and co‑produced with — people with ME/CFS. Thousands of individuals have contributed feedback, ensuring the toolkit reflects the issues that genuinely matter to the community.

I think there is a real issue if clearly there is an appetite and a reason that this claim of patients leading things being used ie the NHS is demanding co-creation and listening, and yet the 'pool' is similar across different studies and includes those who are on both sides of the coin ie are working in BACME. Are there any BACME non-members for example in any of these 'PAGs'?


The HERITAGE study is looking to recruit participants who have ME/CFS or long Covid who have not accessed an NHS specialist service within the last two years.
Find out more about this latest project to see if you want to participate
1f447.png

https://heritage.leeds.ac.uk/join/
Please note, Action for ME is not involved in this study, and sharing it isn’t an endorsement. We’re passing it on so you can decide for yourself whether to take part.
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #Research
 
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MEAs fb post on this study:



Help shape the future of care for ME/CFS and Long Covid!
The HERITAGE study is looking for people with lived experience of ME/CFS and Long Covid to take part in our study!
As a part of Work Packages 1 and 2, you will:
✅
Complete 5 questionnaires over 12 months
✅
Share your symptoms and experiences
✅
Help us develop a framework for better care and support for people living with ME/CFS and Long Covid
✅
Contribute to research that will inform future healthcare services
Please note: Recruitment for Work Package 3 (interviews) has now closed. However, we urgently need participants to contribute by reporting their symptoms through our surveys
1f449.png
Your voice can help shape better care. Take part today and help build the evidence needed to improve support for people with Long COVID and ME/CFS.
1f517.png
https://heritage.leeds.ac.uk/join/
#MECFS #LongCOVID #Research #PatientVoice #HealthcareResearch

I don't know what the 'Recruitment for Work Package 3' is?

I assumed there would be the same note as on the ActionforME post about this that they didn't endorse it, just maybe first sticky post in comments, but there isn't one yet?
 
From the FAQs page on the Leeds website:

Who is responsible for looking after my data?
University of Leeds is the sponsor of this research.


University of Leeds is responsible for looking after your information. We will share your information related to this research project with the following types of organisations:

The University of Leeds (research sponsor)
The University of Oxford (research partner)
The University of Leicester (research partner)
ELAROS 24/7 Ltd (approved data processor providing the app and secure platform)
NHS staff at participating clinics (only where relevant to your care and to the study)
 
Which they told me is closed as too many applied.
Ah OK yes, it seems that this part apparently focuses on
Improving services and setting national standards through patient/carer experiences

Through what an hour's interview asking what questions to both those who only went to certain clinics, and those who never got offered anything?

How do we know that those who found those services harmful aren't being excluded because they didn't complete etc? In fact shouldn't really that be a number 1 starting point for anyone really wanting 'better' that they

1. get a truly independent researchers, and the whole team unconnected to those running it or 'with power' so that there aren't any risks of 'perceived threat' when participants were answering and

2. they start by looking through their books of who had been offered a referral to said clinics and focus on those who didn't attend, didn't complete and weren't satisfied

I'm watching the Hotel Inspector snippets atm as they come up and get thrown at me, but it's exactly the same as what I'd do for improving any service and any other people in other industries would do is that you start with finding out where you've failed and why. Not ringing up customers who happily stayed somewhere for 2 weeks or never got offered a stay, before those who ran away after one night or would have left bad feedback (except most aren't safe to do this as pwme).

Worried about why you would do it this way if you intentions were to improve, rather than attempting to relitigate or 'frame' a set of biased samples as an alternative reality for what 'implementation of something that works' would look like.
 
Worried about why you would do it this way if you intentions were to improve, rather than attempting to relitigate or 'frame' a set of biased samples as an alternative reality for what 'implementation of something that works' would look like.
They have started with the premise that only the tiny percentage ordained with an official NHS diagnosis can even comment so from the outset they already chose to bias the situation to people who are already much more privileged than the average patient. Bias on selection just seems to be the way with most UK science as far as I can tell, select only the patients most likely to have had a good experience and ask no questions of the ones that dropped out at some point.
 
Signed up a while back and waded through the onboarding questionnaires, several of which I was asked to complete twice. Received this email today,

"Your EQ-5D-5L assessment is due today

Your FUNCAP27 (H) assessment is due today

Your EQ-5D-5L assessment is due today

Your FUNCAP27 (H) assessment is due today

Your DSQ - SF assessment is due today

Your Health Economics Questionnaire (HERITAGE) assessment is due today

Your Yorkshire Rehabilitation Scale assessment is due today


Please complete these questionnaires on the Autonom-e app as soon as possible."

I won't be bothering with this poorly designed study. I'm not going to waste my energy and time filling in two questionnaires twice, and even if I was inclined to do so, I didn't install the app the first time, so without a link to where I can fill these in online I'm not going to bother searching for it.
 
Signed up a while back and waded through the onboarding questionnaires, several of which I was asked to complete twice. Received this email today,

"Your EQ-5D-5L assessment is due today

Your FUNCAP27 (H) assessment is due today

Your EQ-5D-5L assessment is due today

Your FUNCAP27 (H) assessment is due today

Your DSQ - SF assessment is due today

Your Health Economics Questionnaire (HERITAGE) assessment is due today

Your Yorkshire Rehabilitation Scale assessment is due today


Please complete these questionnaires on the Autonom-e app as soon as possible."

I won't be bothering with this poorly designed study. I'm not going to waste my energy and time filling in two questionnaires twice, and even if I was inclined to do so, I didn't install the app the first time, so without a link to where I can fill these in online I'm not going to bother searching for it.
I feel the same way. I did the questionnaires on the app on 3rd July. It's now 19th October. I thought they were supposed to remind us to fill them in again every 3 months for a year. I've heard nothing.

I also applied to do the interview in writing and was sent an encouraging response, but by the time I'd managed to find my way through the links to see what I was supposed to do next, and said I was ready I just got an automated ping back email saying they had enough people.

I also wrote a few criticisms and questions in an email and was told someone from the project would get in touch with me. I've heard nothing more.

This is a project the UKNIHR has spent over a million pounds on. I'm disgusted and minded to make a complaint to NIHR and ask them to withdraw the rest of the funding. The whole thing is a farce.
 
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