Epistemic Injustice in Healthcare Encounters: Evidence from Chronic Fatigue Syndrome

Havi Carel, Charlotte Blease, Keith Geraghty

Research output: Contribution to journalArticle (Academic Journal)peer-review

30 Citations (Scopus)
632 Downloads (Pure)

Abstract

Chronic fatigue syndrome or myalgic encephalomyelitis (hereafter, CFS/ME) remains a controversial illness category. This paper surveys the state of knowledge and attitudes about this illness and proposes that epistemic concerns about the testimonial credibility of patients can be articulated using Miranda Fricker’s concept of epistemic injustice. While there is consensus within mainstream medical guidelines that there is no known cause of CFS/ME, there is continued debate about how best to conceive of CFS/ME, including disagreement about how to interpret clinical studies of treatments. Against this background, robust qualitative and quantitative research from a range of countries has found that many doctors (and medical students) display uncertainty about whether CFS/ME is real, which may result in delays in diagnosis and treatment for patients. Strikingly, qualitative research evinces that patients with CFS/ME often experience suspicion by health professionals, and many patients vocally oppose the effectiveness, and the conceptualization, of their illness as psychologically treatable. We address the intersection of these issues and healthcare ethics, and claim that this state of affairs can be explained as a case of epistemic injustice (2007). We find evidence that healthcare consultations are fora where patients with CFS/ME may be particularly vulnerable to epistemic injustice. We argue that the (often unintentional) marginalization of many patients is a professional failure that may lead to further ethical and practical consequences both for progressive research into CFS/ME, and for ethical care and delivery of current treatments among individuals suffering from this debilitating illness.
Original languageEnglish
Pages (from-to)549-557
Number of pages10
JournalJournal of Medical Ethics
Volume43
Issue number8
Early online date5 Dec 2016
DOIs
Publication statusPublished - Aug 2017

Structured keywords

  • Centre for Humanities Health and Science

Keywords

  • Epistemic injustice
  • Chronic fatigue syndrome
  • illness
  • philosophy of medicine
  • patient testimony
  • testimonial injustice
  • hermeneutical injustice

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