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Background

Health Effects of Infection Sequelae – Tailoring Services and Advancing Guidance in Long COVID and ME/CF

HERITAGE is funded by the National Institute for Health and Care Research (NIHR) (Award ID: NIHR174857) to address one of the most urgent health‑service challenges in the UK: how to deliver effective, equitable, and evidence‑based care for people living with Long Covid (LC) and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

More than 4% of UK adults live with one of these long-term, often disabling conditions. Both Long COVID and ME/CFS severely affect quality of life, daily functioning, ability to work, and healthcare use.
Yet specialist services across the UK remain uneven, fragmented, or inaccessible for many. HERITAGE aims to change that.

 

Our Aim

 To improve care for people living with Long COVID (LC) and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) by evaluating different models of service delivery.
To develop a National Service Framework for LC and ME/CFS based on evidence, patient experiences, cost‑effectiveness, equity, and high‑quality clinical care.
HERITAGE consists of three integrated work packages, each addressing part of the puzzle in improving LC and ME/CFS services.

Work Package 1: Understanding Conditions and Overlap

Led by University of Leeds and partner clinics

This work package will:
  • Estimate how often LC and ME/CFS co‑occur
  • Map long‑term symptom trajectories over 12 months
  • Analyse clinical outcomes for people with LC, ME/CFS or both
  • Include both clinic-based and national non‑clinic cohorts
Participants provide information 3-monthly via the ELAROS app.
Contact the team at [email protected]

Work Package 2: Understanding Costs and Models of Care

Led by health economics experts at University of Oxford & collaborators

This work package will:

  • Analyse NHS and social care costs
  • Evaluate societal impacts, including ability to work
  • Compare four real‑world service models:
    • No specialist service
    • Separate ME/CFS + LC services
    • Services considering integration
    • Fully integrated services
  • Assess which models are cost‑effective, equitable and scalable

Contact the team at [email protected]

Work Package 3: Improving Services and Setting National Standards

Led by University of Leicester (qualitative & service improvement)

This work package will:
  • Produce case studies of service staffing, skill set and multi‑condition integration
  • Launch a Quality Improvement Collaborative (QIC) involving staff, patients and researchers
  • Develop training resources for clinicians across the UK
  • Create a National Service Framework (NSF) for LC and ME/CFS

Contact the team at [email protected]

Study Participants

HERITAGE will include around 3,000 people with Long Covid and/or ME/CFS from:

  • Specialist NHS clinics
  • GP practices
  • Charities and patient networks
  • A national non‑clinic cohort