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Paper short abstract

This paper explores the 'making' of Long Covid and Myalgic Encephalomyelitis/ CFS in the UK context, focusing on explanatory frameworks of causation, differing perspectives on the importance of symptom management versus aetiological clarity and the varying provision and distribution of services.

Paper long abstract

Long Covid (LC) and Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) are both contested conditions, with potential overlap in terms of symptoms and some commonalities in relation to patients’ experiences of ‘fighting for’ and the ‘making of’ those conditions. The development of LC services in the UK in the aftermath of the pandemic was conceptualised as a form of health system resilience yet, generally, service responses to people with both these conditions are described as insufficient, unsatisfactory and fraught with inequity.

A major UK study 2026-2028, Health Effects fRom Infection sequelae: Tailoring services and Advancing GuidancE (HERITAGE) in Long Covid and Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, is investigating the potential overlap between LC and ME/CFS and analysing care across different service delivery models, and among individuals without access to specialist care. The study seeks to improve care, provide a better service response to people with either/both conditions, and potentially advance care for other post-infection conditions. 

This paper will discuss the proposed and ongoing qualitative work within the wider HERITAGE study. This early work includes understanding the changing landscape of specialist service provision in the UK which, through the integration and reduction of some services, arguably indicates health system resistance to fully addressing these conditions. This paper will explore the role of explanatory frameworks of causation, differing perspectives on the importance of symptom management versus aetiological clarity and the varying provision and distribution of services in the ‘making’ of these conditions.

Keywords: Long Covid, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, causation, resilience, resistance