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Cited by 276Feminist Epistemology and Gender StudiesFibromyalgia and Chronic Fatigue Syndrome ResearchMedicine, History, and Philosophy

Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome

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Blease, Charlotte, Carel, Havi, Geraghty, Keith·2017·Journal of Medical Ethics
DOI 10.1136/medethics-2016-103691
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Abstract

Chronic fatigue syndrome or myalgic encephalomyelitis (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 healthcare professionals, and many patients vocally oppose the effectiveness, and the conceptualisation, 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) marginalisation 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.

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  • Physically disabled persons' claims that they are happy and living good lives have been dismissed due to prejudices about the possibility of living well whilst disabled.

    “Moreover, physically disabled persons' claims that they are happy and living good lives have also been dismissed due to prejudices about the possibility of living well whilst disabled (Blease et al., 2016;”

    From Neurodiversity, epistemic injustice, and the good human life (2022) · cites this paper as Blease et al., 2016

    The Testimonial injustice section (p. 3) says that negative stereotyping of an illness or disability can constrain a patient's contribution to consultations. The Summary (p. 7) reports that stereotypes can lead to patients with CFS/ME having their testimony discounted. Neither passage addresses physically disabled people’s claims that they are happy or living good lives, or prejudice about whether living well with a disability is possible. (LLM, conf=0.84)

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  • Research has revealed systematic stifling of the voices and interpretive tools available to ill and disabled persons, especially their information providing, testimonies, and interpretations.

    “What has been revealed is the systematic stifling of the voices and interpretive tools available to both ill and disabled persons: in particular, their information providing, testimonies, and interpretations.”

    From Neurodiversity, epistemic injustice, and the good human life (2022) · cites this paper as Blease et al., 2016

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Research works printed but not linked: 43

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Cited by

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Authors
Blease, C., Carel, H., & Geraghty, K.
Affiliations
  • University College Dublin (IE)
  • University of Bristol (GB)
  • University of Manchester (GB)
Corresponding author
Blease, Charlotte
ORCID
Venue
Journal of Medical Ethics
Publisher
BMJ
Published
2016-12-05
Volume
43
Issue
8
Pages
549-557
ISSN
  • 0306-6800 (ISSN-L)
  • 1473-4257
DOI
10.1136/medethics-2016-103691
OpenAlex
W2560478717
Cited by
276
References
3
Citations by year
2026: 43 · 2025: 56 · 2024: 51 · 2023: 31 · 2022: 26 · 2021: 17 · 2020: 27 · 2019: 10 · 2018: 12 · 2017: 2
FWCI
22.88
Type
journal article
Language
en
Open access
Locations
  • Journal of Medical Ethics (publishedVersion)
  • PubMed (publishedVersion)
  • Explore Bristol Research (acceptedVersion, other-oa)
  • Bristol Research (University of Bristol) (submittedVersion, other-oa)
  • HighWire Press Open Archive (submittedVersion)
  • PhilPapers (PhilPapers Foundation) (submittedVersion)
  • Research Explorer (The University of Manchester) (submittedVersion)
Funders
Wellcome Trust (103340)
Topics
  • Social Sciences › Sociology and Political Science › Feminist Epistemology and Gender Studies
  • Health Sciences › Medicine › Psychiatry and Mental health › Fibromyalgia and Chronic Fatigue Syndrome Research
  • Health Sciences › Medicine › Psychiatry and Mental health › Medicine, History, and Philosophy
Keywords
epistemic injustice, chronic fatigue syndrome, Miranda Fricker, physician-patient relationship, clinical uncertainty, delayed diagnosis, health care ethics, psychological intervention
MeSH terms
Attitude of Health Personnel, Delivery of Health Care, Ethics, Medical, Humans, Physician-Patient Relations, Physicians, Social Justice, Somatoform Disorders, Stereotyping, Fatigue Syndrome, Chronic, Knowledge, Uncertainty, Qualitative Research

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