What is the HERITAGE study?
The HERITAGE study aims to address an urgent question in NHS healthcare: how to deliver effective, equitable, and evidence‑based care for people living with Long Covid and ME/CFS?
The study team will evaluate different models of healthcare service delivery and develop a National Service Framework based on evidence, patient experience, cost‑effectiveness, equity, and high‑quality clinical care.
This is a £1.4M study that began in January and will complete in June 2028. It is supported by the National Institute for Health and Care Research (NIHR) and is led by Professor Manoj Sivan from Leeds University.
Where will HERITAGE be collecting patient experiences from?
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).
This will help achieve the stated goals of the 3 Work Packages (WP):
- WP 1: Understanding Long Covid and ME/CFS and their overlap.
- WP 2: Understanding costs and models of care.
- WP 3: Improving services and setting national standards.
How can you get involved?
Recruiting the non-clinical cohort:
We would be grateful if you might consider joining the non-clinical cohort. We need 1,000 people from across the UK who can answer YES to the following:
- Are you aged 18 or over?
- Do you live in the UK?
- Have you had Long Covid or ME/CFS symptoms for 2 years or longer?
- Do you have a diagnosis of Long Covid or ME/CFS or are you waiting for a diagnosis?
- Have you been managing your condition without any help from NHS Long Covid clinics or ME/CFS specialist services for the last 3 years?
If you are willing to take part you can choose either or both of the following methods:
- Work Package 1 & 2: Complete regular questionnaires about your health over the next 12 months,
- Work Package 3: Complete an interview about your health that will take 1 hour.
Click the links to learn more about each method and how you can take part.
Find out more on the HERITAGE website:
- Homepage (with Work Package details): https://heritage.leeds.ac.uk/
- Frequently Asked Questions
- Recruitment
If you have any further questions, please contact the research team: heritage-studyteam@leeds.ac.uk or phone: 0113 3924 734
Russell Fleming
Research Manager,
The ME Association
