Recursive Debility: Symptoms, Patient Activism, and the Incomplete Medicalization of ME/CFS
Recursive Debility: Symptoms, Patient Activism, and the Incomplete Medicalization of ME/CFS
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递归衰弱：ME/CFS 的症状、患者积极性和不完全医疗化
DOI：
10.1111/maq.12701
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发表时间：
2022
影响因子：
2.2
通讯作者：
Rogers, Emily Lim
中科院分区：
文献类型：
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作者：
Rogers, Emily Lim
本文探讨了肌痛性脑脊髓炎/慢性疲劳综合征（ME/CFS）的争论。由于缺乏一致的诊断定义、商定的生物学指标或批准的治疗方法，ME/CFS 是一种不完全医疗化的疾病。它的定义是任何形式的劳累后出现顽固性和令人衰弱的疲惫。通过对美国 ME/CFS 患者活动团体的人种学探索，我提出了“递归衰弱”的概念。在缺乏生物标志物的情况下，症状构成了疾病活动分子分组的基础，但它们也对传统形式的活动主义构成了重大障碍。讽刺的是，衰弱阻碍了结束衰弱的手段。患者对知识体系提出质疑，但身体却总是在不断地疲惫不堪。本文提出了一项残疾研究干预措施，表明衰弱的反复出现表明身体方面的损伤与残疾的社会政治方面之间存在深刻的相互依赖性。[ME/CFS、慢性病、医疗、症状、衰弱]
This article examines the contestation of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Lacking consistent diagnostic definitions, agreed‐on biological indicators, or approved treatments, ME/CFS is an incompletely medicalized condition. It is defined by intractable and debilitating exhaustion after any form of exertion. Through an ethnographic exploration of an American ME/CFS patient activist group, I develop the concept of “recursive debility.” Symptoms form the very basis for disease activist groupings in the absence of biomarkers, but they also present a significant barrier to traditional forms of activism. Ironically, then, debilitation blocks the means through which debilitation might end. Patients contest systems of knowledge but always in bodies that experience exhaustion without end. This article presents a disability studies intervention in suggesting that the recursivity of debility demonstrates the profound interdependence of the bodily aspects of impairment and the sociopolitical aspects of disability.[ME/CFS, chronic illness, medicalization, symptoms, debility]