Abstract:
This article examines the contestation of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Lacking consistent diagnostic definitions, agreed-on biological indicators, or approved treatments, ME/CFS is an incompletely medicalized condition. It is defined by intractable and debilitating exhaustion after any form of exertion. Through an ethnographic exploration of an American ME/CFS patient activist group, I develop the concept of “recursive debility.” Symptoms form the very basis for disease activist groupings in the absence of biomarkers, but they also present a significant barrier to traditional forms of activism. Ironically, then, debilitation blocks the means through which debilitation might end. Patients contest systems of knowledge but always in bodies that experience exhaustion without end. This article presents a disability studies intervention in suggesting that the recursivity of debility demonstrates the profound interdependence of the bodily aspects of impairment and the sociopolitical aspects of disability.
Source: Rogers EL. Recursive Debility: Symptoms, Patient Activism, and the Incomplete Medicalization of ME/CFS. Med Anthropol Q. 2022 Mar 8. doi: 10.1111/maq.12701. Epub ahead of print. PMID: 35262958. https://pubmed.ncbi.nlm.nih.gov/35262958/