Karfakis, Nikos · Studies in history and philosophy of biological and biomedical sciences · 2018 · DOI
This paper examines how ME/CFS is shaped by different groups—doctors, scientists, government officials, and patients themselves—who all try to define and understand the illness. The author shows that ME/CFS sits uncomfortably between medical and psychiatric explanations, which makes it hard for everyone to agree on what it is and how to treat it. Patients aren't just passive recipients of medical care; they actively educate themselves and push back against explanations they disagree with, which influences how the illness is understood.
Understanding ME/CFS as a contested biopolitical object helps explain why diagnostic criteria, treatment approaches, and research funding remain fragmented and contentious. This perspective validates patient experiences of being caught between competing medical and psychiatric frameworks, and highlights the importance of patient voices in shaping how the disease is defined and researched.
This paper does not establish the biological basis of ME/CFS, nor does it prove the efficacy or safety of any particular treatment. It is a sociological analysis rather than a clinical study, so it cannot demonstrate cause-and-effect relationships between interventions and health outcomes. It does not resolve the ongoing debate about psychiatric versus biomedical models of the illness.
About the PEM badge: “PEM required” means post-exertional malaise was an explicit required diagnostic criterion for participant inclusion in this study — not that PEM was studied, observed, or discussed. Studies using criteria that do not require PEM (e.g. Fukuda, Oxford) are tagged “PEM not required”. How the atlas works →
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