Grue, Jan · Health (London, England : 1997) · 2016 · DOI
This study explores how people with ME/CFS manage their identity and daily life while dealing with an illness that society doesn't fully recognize or understand. The researchers use the concept of "illness as work" to show that patients are actively doing important identity work—constantly adapting to their condition, navigating medical systems, and coping with a stigmatized illness. This framework helps validate the real effort and agency that ME/CFS patients demonstrate every day.
This research validates the experiences of ME/CFS patients by recognizing that living with ME/CFS involves significant, ongoing 'work'—both physical and psychological—to manage identity and navigate a healthcare system that often dismisses their condition. By centering patient agency and acknowledging the social marginalization of ME/CFS, this study provides a framework that clinicians and researchers can use to better understand and respect the experiences of those living with the disease.
This study does not establish the biological mechanisms, etiology, or pathophysiology of ME/CFS. It is a qualitative, conceptual analysis rather than an empirical investigation, so it does not provide data on prevalence, symptom severity, or treatment outcomes. The study describes sociological concepts rather than proving causal relationships or making clinical claims.
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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