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Are ME/CFS Patient Organizations “Militant”?

Patient Protest in a Medical Controversy
  • Charlotte Blease
  • Keith J. Geraghty
Symposium: Collective Representation in Healthcare Policy

Abstract

Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a contested illness category. This paper investigates the common claim that patients with ME/CFS—and 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.

Keywords

Epistemic injustice Doctor–patient communication Healthcare ethics ME/CFS Patient activism 

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Copyright information

© Journal of Bioethical Inquiry Pty Ltd. 2018

Authors and Affiliations

  1. 1.General Medicine and Primary Care Research, Beth Israel Deaconess Medical CenterHarvard Medical SchoolBostonUSA
  2. 2.School of PsychologyUniversity College DublinDublin 4Ireland
  3. 3.Centre for Primary Care, Institute of Population Health, School of Community Based MedicineUniversity of ManchesterManchesterUSA

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