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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.

Why It Matters?

Care for Long Covid and ME/CFS is very different from place to place in the UK.
Your voice can help shape better care.
Taking part will help build the evidence needed to improve support for people with Long COVID and ME/CFS.

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 by completing a set of 6 questionnaires via the Autonome-E app.
If preferred, the questionnaires can be provided as paper copies instead.

Work Package 2: Understanding Costs and Models of Care

Led by health economics experts at University of Oxford & collaborators

This package is integrated with the Work Package 1.

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
Participants provide information 3-monthly by completing a set of 6 questionnaires via the Autonome-E app.
If preferred, the questionnaires can be provided as paper copies instead.

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

 

Latest Updates

Work Package 3: Interviews Are Currently Closed to Recruitment

Contact

Questions?
Phone: 0113 343 6806
Email: [email protected].
We aim to reply within 2 working days.