Long Covid and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) study
The HERITAGE study aims to understand the long-term symptoms of Long Covid and ME/CFS and how these conditions affect daily life. Researchers also want to hear about people's experiences with NHS and community services, and what makes this care helpful or not. The goal is to find ways to improve healthcare across the UK by gathering feedback from patients, carers, and healthcare staff. Participants will complete questionnaires about their health and daily activities. Some will also be invited for interviews to share their stories. This study does not involve new treatments or medicines; it's purely about understanding and improving current care.
At a glance
What is this study about?
Many people with Long Covid and ME/CFS face ongoing symptoms that make everyday life challenging and can affect their jobs and overall well-being. It can also be tough to get consistent support and care. The HERITAGE study is trying to understand these experiences better. It specifically looks at how symptoms change over time, what people's journeys with NHS and local services are like, and what aspects of their care they find helpful or unhelpful.
The main aim is to gather lots of information to help improve services for everyone with Long Covid and ME/CFS across the country. Researchers will be asking patients, their carers, and healthcare professionals for their thoughts and experiences. This feedback is really important for pinpointing what needs to change and how healthcare can be made better in the future.
This study isn't about testing new medicines or treatments; it's about learning from people's real-life experiences. By taking part, you could help shape how care is provided for these conditions in the years to come, making a real difference for others facing similar challenges.
Key takeaways
- The HERITAGE study wants to understand Long Covid and ME/CFS better.
- It aims to improve NHS services for these conditions.
- Participation involves filling out questionnaires and possibly an interview.
- No new treatments or medicines are given as part of this study.
- Your experiences can help shape future patient care.
- You can stop participating at any time.
Who may be eligible?
This study is looking for adults aged 18 and over. They are interested in four main groups: people with Long Covid, people with ME/CFS, people who have both conditions, and also healthcare workers or anyone else who supports people with these illnesses.
If you have Long Covid or ME/CFS, you could be eligible whether you're currently getting specialist NHS care, have had it in the past, or haven't used specialist services at all. The key is that you've had symptoms of Long Covid or ME/CFS for at least two years.
You might be invited if you're attending one of the specialist NHS clinics involved in the study in Leeds, Leicester, Hertfordshire, or Cornwall. They are also looking for people who haven't received specialist care from these specific clinics in the last three years but have either been diagnosed with Long Covid or ME/CFS by their GP, or believe they have one of these conditions.
- Are you 18 years old or older?
- Do you have Long Covid, ME/CFS, or both?
- Have you had symptoms of your condition for at least two years?
- Are you willing to share your experiences through questionnaires or an interview?
This is a guide only — the research team will confirm whether you can take part.
What does participation involve?
If you choose to take part as a patient with Long Covid or ME/CFS, you will be asked to fill out questionnaires. These questionnaires will ask about your symptoms, your daily activities, how your quality of life is, and what healthcare services you use. You can complete these online using a website or app, or on paper if you prefer. Some patients, carers (if they support a participant), and healthcare staff may also be invited to have a one-to-one interview to share their experiences in more detail. These interviews can be done over the phone, online (using Microsoft Teams), or sometimes in person. This study does not involve any new treatments, tests, or medicines. The study is expected to run from May 2026 to December 2028.
Potential risks and benefits
Locations (4)
- University Hospitals of Leicester NHS TrustLeicester, England
- Hertfordshire Community NHS TrustWelwyn Garden City, England
- Royal Cornwall Hospitals & West Cornwall Hospital LaboratoryTruro, England
- Leeds Community Healthcare NHS TrustLeeds, England
Common questions
What is the HERITAGE study trying to achieve?
The study aims to understand the experiences of people with Long Covid and ME/CFS and use this information to improve healthcare services across the UK.
Will I receive any new treatments or medicines if I join?
No, this study does not involve giving any new treatments, medicines, or tests. It's focused on gathering information about your experiences.
How will my privacy be protected if I take part?
All information you provide will be kept confidential, meaning your personal details will be protected and not shared without your permission.
Can I stop participating in the study once I've started?
Yes, you can withdraw from the study at any time without having to give a reason, and it won't affect your future medical care.
How long will the study last?
The study is expected to run from May 2026 to December 2028.
How to find out more
Manoj Sivan
Always speak to your GP or specialist before deciding to take part in a study.
Discussion
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