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Are ME/CFS Advocacy Organisations militant?: Patient Protest in a Medical Controversy
General Medicine and Primary Care Research, Beth Israel Deaconess Medical Center, Harvard Medical School, 330 Brookline Avenue, Boston, MA, 02215, USA;School of Psychology, University College Dublin, Belfield, Dublin 4, Ireland.ORCID iD: 0000-0002-0205-1165
2018 (English)In: Journal of Bioethical Inquiry, ISSN 1176-7529, E-ISSN 1872-4353, Vol. 15, no 3, p. 393-401Article in journal (Refereed) Published
Abstract [en]

Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a contested illness category. This paper investigates the common claim that patients with ME/CFSand by extension, ME/CFS patient organizations (POs)exhibit militant social and political tendencies. The paper opens with a history of the protracted scientific disagreement over ME/CFS. We observe that ME/CFS POs, medical doctors, and medical researchers exhibit clear differences in opinion over how to conceptualize this illness. However, we identify a common trope in the discourse over ME/CFS: the claim of militant patient activism. Scrutinizing this charge, we find no compelling evidence that the vast majority of patients with ME/CFS, or the POs representing them, have adopted any such militant political policies or behaviours. Instead, we observe key strategic similarities between ME/CFS POs in the United Kingdom and the AIDs activist organizations of the mid-1980s in the United States which sought to engage scientists using the platform of public activism and via scientific publications. Finally, we explore the contours of disagreement between POs and the medical community by drawing on the concept of epistemic injustice. We find that widespread negative stereotyping of patients and the marginalization and exclusion of patient voices by medical authorities provides a better explanation for expressions of frustration among patients with ME/CFS.

Place, publisher, year, edition, pages
Springer Nature, 2018. Vol. 15, no 3, p. 393-401
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Other Medical Sciences not elsewhere specified Medical Ethics
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URN: urn:nbn:se:uu:diva-488791DOI: 10.1007/s11673-018-9866-5ISI: 000448674100012PubMedID: 29971693OAI: oai:DiVA.org:uu-488791DiVA, id: diva2:1712435
Available from: 2022-11-21 Created: 2022-11-21 Last updated: 2023-05-03Bibliographically approved

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Blease, Charlotte

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