Transforming biomedical uncertainty: the sociohistorical origins of myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS)

Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are serious and disabling long-term conditions characterised by uncertainty surrounding their aetiology, diagnosis and treatment. People with ME/CFS struggle to be understood, taken seriously and supported with their illness. At least since the 1990s, ME and CFS have been considered by many to be related, overlapping or synonymous with one another. However, the concepts originated from different sociohistorical contexts. This article disentangles the histories of ME and CFS, roots them in the UK and the USA respectively, and compares how they emerged as medical and scientific objects. Drawing on a critical literature analysis of medical texts between 1950 and 1990, I explore how both ME and CFS materialised through the regulation of uncertainty within biomedical systems. In both cases, uncertainty was transformed into knowledge by systematically obscuring certain aspects of illness. These transformations shaped what could be known about these conditions in the decades to come and may be at the root of the epistemic injustices experienced by patients. Those who campaign for more scientific research into ME/CFS should be wary of the propensity for biomedicine to generate ignorance in the face of these complex conditions. This analysis contributes to a growing body of research on the medical sociology of ignorance, further illustrating the value of uncertainty and ignorance as heuristic tools for understanding the politics of knowledge production within biomedical systems.