School of Philosophy, University College Dublin, Dublin, Ireland.
Program in Placebo Studies, Harvard Medical School, Harvard University, Boston, USA.
J Med Ethics. 2017 Aug;43(8):549-557. doi: 10.1136/medethics-2016-103691. Epub 2016 Dec 5.
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.
慢性疲劳综合征或肌痛性脑脊髓炎（CFS/ME）仍然是一个有争议的疾病类别。本文调查了人们对这种疾病的知识和态度，并提出，关于患者证词可信度的认识论问题，可以用米兰达·弗里克（Miranda Fricker）的认识论不公正概念来表达。虽然主流医学指南中有共识认为 CFS/ME 没有已知的病因，但对于如何最好地构想 CFS/ME 仍存在持续的争论，包括对如何解释治疗的临床研究存在分歧。在此背景下，来自多个国家的强有力的定性和定量研究发现，许多医生（和医学生）对 CFS/ME 是否真实存在表示不确定，这可能导致患者的诊断和治疗延迟。引人注目的是，定性研究表明，CFS/ME 患者经常受到医疗保健专业人员的怀疑，许多患者强烈反对将其疾病视为可通过心理治疗来治疗的有效性和概念化。我们探讨了这些问题与医疗保健伦理的交叉点，并声称这种情况可以解释为认识论不公正的案例（2007）。我们有证据表明，医疗咨询是 CFS/ME 患者特别容易受到认识论不公正影响的场所。我们认为，许多患者（往往是无意的）被边缘化是一种专业失败，这可能会导致 CFS/ME 的进一步研究以及对患有这种使人衰弱疾病的个体进行道德关怀和提供现有治疗产生进一步的伦理和实际后果。
