HERITAGE

• Research type

  Research Study

• Full title

  Health Effects fRom Infection sequelae: Tailoring services and Advancing GuidancE (HERITAGE) in Long Covid and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

• IRAS ID

  346281

• Contact name

  Manoj Sivan

• Contact email

  M.Sivan@leeds.ac.uk

• Sponsor organisation

  University of Leeds

• Duration of Study in the UK

  2 years, 6 months, 1 days

• Research summary

  This mixed-methods, multi-site study will use both quantitative and qualitative approaches to investigate Long Covid (LC) and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) across different service delivery models and among individuals without access to specialist care. Approximately 3,000 participants with LC or ME/CFS will be recruited from four locality-based service models:

  - Leeds (where LC and ME/CFS services are separate) and only the Long Covid service is involved in HERITAGE,
  - Leicester (separate LC clinic and ME/CFS service closed) only the Long Covid service is involved in HERITAGE,
  - Hertfordshire (an integrated LC and ME/CFS service)and
  - Cornwall (ME/CFS service with LC service expected to merge) both services are involved in HERITAGE,
  - and from a non-clinic national cohort comprising individuals who do not have access to specialist clinics.

  Allowing for a 50% attrition rate, it is anticipated that over 1,500 participants will complete a 12-month longitudinal follow-up. Standardised clinical, health, and economic data will be collected, including digital patient-reported outcome measures (DPROMs), patient- and NHS-borne costs, and vocational outcomes, to enable comparison of condition trajectories and cost-effectiveness across models of care. Qualitative data from patients, clinicians, and service leads will inform contextual understanding and service development. Patient and Public Involvement (PPI), equity considerations, vocational outcomes and health system transformation principles will be embedded throughout all work packages.

  The study has three work packages:

  - WP1 will follow people with LC or ME/CFS over time to understand how their symptoms change, how often the two conditions overlap, and what happens to their health and daily life.
  - WP2 will examine the costs of care to the NHS, patients, carers and society, and compare how effective different service models are.
  - WP3 will explore experiences of care in more depth through interviews, clinic observations and a Quality Improvement Collaborative to help design a future national service framework.
  

• REC name

  London - Surrey Research Ethics Committee

• REC reference

  26/LO/0344

• Date of REC Opinion

  15 May 2026

• REC opinion

  Further Information Favourable Opinion