Research project
HERITAGE Study - Health Effects from Infection sequelae: Tailoring services and Advancing Guidance (HERITAGE) in Long Covid and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
- Start date: 1 January 2026
- End date: 30 June 2028
- Funder: National Institute for Health and Care Research (NIHR)
- Value: £1,389,206.23
- Partners and collaborators: University of Leicester, University of Oxford, ELAROS (Commercial partner). NHS Sites: Leeds Community Healthcare Trust, University Hospitals of Leicester NHS Trust, Hertfordshire Community NHS Trust, Royal Cornwall Hospitals NHS Trust
- Primary investigator: Professor Manoj Sivan MD FRCP Ed
- Co-investigators: Dr Darren C Greenwood, Adam Smith, Dr Stephen Halpin, Amy Rebane
- External co-investigators: Belinda Godfrey,
Description
HERITAGE (Health Effects fRom Infection sequelae: Tailoring services and Advancing GuidancE) is a national mixed‑methods study designed to improve understanding and delivery of NHS care for people living with Long Covid (LC) and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
These long‑term post‑infection conditions can severely affect daily life, work, and wellbeing, yet access to specialist services varies widely across the UK. There is currently no national framework to guide how care should be organised.
The study will follow around 3,000 adults with LC or ME/CFS for 15 months, recruited from four NHS service models; Leeds, Leicester, Hertfordshire and Cornwall, and from a national cohort of people without access to specialist clinics. This will allow comparison of symptom trajectories, health and economic outcomes, and care pathways across different approaches to service delivery.
HERITAGE includes three components:
- Quantitative research: Participants complete surveys every three months on symptoms, functioning, healthcare use, and costs, with optional review of clinical records for those receiving specialist care. Surveys are available digitally or on paper to support accessibility.
- Qualitative research: Interviews, focus groups and observations explore lived experience, service challenges, and organisational factors affecting care delivery across regions.
- Quality Improvement Collaborative (QIC): Clinicians, service leads and patients work together to co‑design practical improvements that can be implemented locally and inform national guidance.
Patient and Public Involvement (PPI) is embedded throughout, with a Patient Advisory Group and wider involvement networks shaping study design, materials, recruitment and dissemination.
HERITAGE aims to address three core questions:
- What is the diagnostic overlap, clinical trajectory, and long‑term outcome profile of LC and ME/CFS across different patient groups?
- How clinically effective and cost‑effective are different NHS service models for LC and ME/CFS?
- How can LC and ME/CFS services be improved, and what principles should underpin a future national service framework?
Impact
Forecasted Impact
The HERITAGE study will generate essential evidence to improve NHS services for people with Long Covid (LC) and ME/CFS. By comparing outcomes across different service models and a national non‑clinic cohort, the study will help identify which approaches are most effective, equitable, and sustainable.
Findings will support NHS commissioners and service leads to reduce unwarranted variation in access and care quality, particularly for underserved groups. Academically, the study will establish one of the UK’s largest cohorts of individuals with persistent LC and ME/CFS, creating a foundation for future research and informing the development of a national service framework for post‑infection conditions.
Through the Quality Improvement Collaborative (QIC), HERITAGE aims to provide practical, real‑time learning that participating sites can use to enhance care pathways and workforce planning. Patients will benefit from clearer routes into care, improved symptom monitoring through digital PROMs, and services better aligned to their needs.