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Contested and neglected: Social and medical marginalization in severe Chronic Fatigue Syndrome

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  • Nezamdoust, Bita
  • Ruel, Erin

Abstract

This study addresses the persistent invisibility of people with severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in research by centering their voices and examining how social and institutional forces shape their lives. As a medically contested illness, ME/CFS—especially in its severe form—renders patients both physically incapacitated and socially invisible. Drawing on qualitative content analysis of 342 tweets under the hashtag #severeME, we identify how contested legitimacy, gendered stigma, and systemic marginalization structure the daily realities of 161 individuals with severe ME/CFS or their caregivers. Our findings highlight profound functional debilitation, emotional isolation, and exclusion from care and disability systems. We argue for the urgent need to legitimize contested illnesses, reform models of care, and extend disability protections to restore dignity and support to this neglected population.

Suggested Citation

  • Nezamdoust, Bita & Ruel, Erin, 2026. "Contested and neglected: Social and medical marginalization in severe Chronic Fatigue Syndrome," Social Science & Medicine, Elsevier, vol. 388(C).
    • Handle: RePEc:eee:socmed:v:388:y:2026:i:c:s0277953625010974
    DOI: 10.1016/j.socscimed.2025.118766
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    References listed on IDEAS

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