From the Journal of Medical Ethics, 5 December 2016.
Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome
Charlotte Blease(1,2), Havi Carel(3), Keith Geraghty(4).
1) School of Philosophy, University College Dublin, Dublin, Ireland
2) Program in Placebo Studies, Harvard Medical School, Harvard University, Boston, USA
3) School of Philosophy, University of Bristol, Bristol, UK
4) Centre for Primary Care, University of Manchester, Manchester, UK
Correspondence to Dr Charlotte Blease, Centre for Medical Humanities, University of Leeds, Humanities Research Institute, Leeds LS2 9JT, UK; firstname.lastname@example.org
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.