Are ME/CFS Patient Organizations "Militant"?: Patient Protest in a Medical Controversy
Are ME/CFS Patient Organizations "Militant"?: Patient Protest in a Medical Controversy
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DOI：
10.1007/s11673-018-9866-5
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发表时间：
2018-09-01
影响因子：
2.4
通讯作者：
Geraghty, Keith J.
中科院分区：
文献类型：
--
作者：
Blease, Charlotte;Geraghty, Keith J.
肌痛性脑脊髓炎或慢性疲劳综合征（ME/CFS）是一个有争议的疾病类别。本文调查了ME/CFS患者的共同主张，ME/CFS患者组织（PO）表现出好战的社会和政治倾向。本文以ME/CFS长期科学分歧的历史开始。我们观察到ME/CFS PO，医生和医学研究人员在如何概念化这种疾病的意见上表现出明显的差异。然而，我们确定了一个共同的比喻在话语ME/CFS：好战的病人行动主义的索赔。仔细检查这一指控，我们没有发现令人信服的证据表明绝大多数ME/CFS患者或代表他们的PO采取了任何此类激进的政治政策或行为。相反，我们观察到关键的战略相似之处ME/CFS PO在英国和艾滋病活动家组织的20世纪80年代中期在美国，试图让科学家使用公共行动主义的平台，并通过科学出版物。最后，我们探讨的轮廓PO和医学界之间的分歧，通过借鉴认识不公正的概念。我们发现，广泛的负面刻板印象的患者和边缘化和排斥患者的声音，医疗当局提供了一个更好的解释与ME/CFS患者之间的挫折感的表达。
Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a contested illness category. This paper investigates the common claim that patients with ME/CFSand by extension, ME/CFS patient organizations (POs)exhibit militant social and political tendencies. The paper opens with a history of the protracted scientific disagreement over ME/CFS. We observe that ME/CFS POs, medical doctors, and medical researchers exhibit clear differences in opinion over how to conceptualize this illness. However, we identify a common trope in the discourse over ME/CFS: the claim of militant patient activism. Scrutinizing this charge, we find no compelling evidence that the vast majority of patients with ME/CFS, or the POs representing them, have adopted any such militant political policies or behaviours. Instead, we observe key strategic similarities between ME/CFS POs in the United Kingdom and the AIDs activist organizations of the mid-1980s in the United States which sought to engage scientists using the platform of public activism and via scientific publications. Finally, we explore the contours of disagreement between POs and the medical community by drawing on the concept of epistemic injustice. We find that widespread negative stereotyping of patients and the marginalization and exclusion of patient voices by medical authorities provides a better explanation for expressions of frustration among patients with ME/CFS.