Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome

Journal of Medical Ethics 43 (8):549-557 (2017)
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Abstract

Chronic fatigue syndrome or myalgic encephalomyelitis 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 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. We find evidence that healthcare consultations are fora where patients with CFS/ME may be particularly vulnerable to epistemic injustice. We argue that the 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.

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Havi Carel
University of Bristol

References found in this work

Epistemic Injustice and Illness.Ian James Kidd & Havi Carel - 2016 - Journal of Applied Philosophy 34 (2):172-190.
Epistemic Injustice in Healthcare: A Philosophical Analysis.Ian James Kidd & Havi Carel - 2014 - Medicine, Health Care and Philosophy 17 (4):529-540.
Medicalization and epistemic injustice.Alistair Wardrope - 2015 - Medicine, Health Care and Philosophy 18 (3):341-352.
Illness, phenomenology, and philosophical method.Havi Hannah Carel - 2013 - Theoretical Medicine and Bioethics 34 (4):345-357.

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