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

BACKGROUND: Persistent Long covid (LC) or post-COVID syndrome, defined as LC present for > 2 years and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) are long-term conditions that together affect > 1.5 million people in the UK alone and > 60 million worldwide. Both conditions have significant overlapping symptoms, are linked to infections, and have some common underlying pathophysiology. The burden to the UK economy per year is estimated to be £8.1 billion for LC and £3.3 billion for ME/CFS. These two conditions are nevertheless not adequately prioritised by National Health Service (NHS) services (many LC clinics are closing, and many UK areas lack ME/CFS clinics) and lack research funding. There is an urgent need for health services research and developing a National Service Framework that will improve care in existing services and effectively reduce the overall costs to the NHS and the UK economy. In the NIHR-funded health services LOCOMOTION study (2021-2024), we acquired expertise, skills and databases in LC that will help deliver HERITAGE at a lower cost to funder and maximise the opportunity to develop a National Service Framework for ME/CFS and LC. AIMS AND OBJECTIVES: The study in ME/CFS and LC aims to: 1) explore the overlap, long-term trajectory of symptoms, and clinical outcomes; 2) assess the healthcare utilisation and cost-effectiveness of different service models (including analysing costs and outcomes in a national cohort with no access to clinics); 3) develop a national service framework to improve quality of care in both conditions METHODS: WP1: Map the clinical course and health costs over 12 months in persistent LC (1250 patients complete datasets) and ME/CFS (250 patients) via our validated DPROM platform from three established sites (with different integration models) and a non-clinic national cohort (who have either no access to specialist clinic or no clinics in their area); WP2: estimate the cost-effectiveness of three service models and also compare to UK-wide non-clinic cohort using validated PROMs for LC and ME/CFS, EQ5D-5L, healthcare utilisation, vocational productivity loss, carer burden and Quality Adjusted Life Year (QALY) estimates; and WP3: exploring quality of care using qualitative interviews and set up a Quality Improvement Collaborative (QIC) to improve care in both conditions informed by the principles of action research and generate training resources and transferable lessons for a National Service Framework for ME/CFS and LC. PPI: The HERITAGE bid was co-developed with a diverse group of UK-wide lived-experience patients from both conditions, charities, and policymakers. The PPI team will be equal partners in research, co-produce research outputs, and help engage stakeholders. IMPACT AND DISSEMINATION: HERITAGE will inform the development of evidence-based, cost-effective NHS service models for LC and ME/CFS. The national service framework will improve quality of life, reduce vocational disability, reduce economic burden, and potentially be applicable to other post-infection syndromes and strengthen our pandemic preparedness. Dissemination will be via our already established channels with all UK LC and ME/CFS clinics, the National Post-Covid Society (CPCS), World Health Organisation, All Party Parliamentary Groups (APPG), NHS Integrated Care Boards (ICBs), patient charities, and research funders.