Illnesses you have to fight to get: Facts as forces in uncertain, emergent illnesses
Illnesses you have to fight to get: Facts as forces in uncertain, emergent illnesses
复制标题
DOI：
10.1016/j.socscimed.2005.06.018
复制
发表时间：
2006-02-01
影响因子：
5.4
通讯作者：
Dumit, J
中科院分区：
文献类型：
--
作者：
Dumit, J
慢性疲劳综合征和多种化学物质敏感性是两组疾病，它们普遍存在于医疗、社会和政治的不确定性中。本文探讨了在美国这些新出现的、有争议的疾病的斗争中，人们是如何谈论和经历事实的。主要基于大量的互联网新闻组帖子档案，以及实地调查和公开辩论，它发现：（1）患者描述了他们被拒绝医疗保健和合法性的经验，通过官僚类别的排斥依赖于他们缺乏生物学事实;（2）机构通过利用科学的开放性来拒绝新事实的有效性来管理这些排斥;（3）集体患者行动通过将这些排除的系统性质存档并制定反策略来做出回应。其结果是维持这些非常昂贵的斗争，为所有参与。(c)2005爱思唯尔有限公司保留所有权利。
Chronic fatigue syndrome and multiple chemical sensitivity are two clusters of illnesses that are pervaded by medical, social and political uncertainty. This article examines how facts are talked about and experienced in struggles over these emergent, contested illnesses in the US. Based principally on a large archive of internet newsgroup postings, and also on fieldwork and on published debates, it finds that (1) sufferers describe their experiences of being denied healthcare and legitimacy through bureaucratic categories of exclusion as dependent upon their lack of biological facts; (2) institutions manage these exclusions rhetorically through exploiting the open-endedness of science to deny efficacy to new facts; (3) collective patient action responds by archiving the systematic nature of these exclusions and developing counter-tactics. The result is the maintenance of these very expensive struggles for all involved. (c) 2005 Elsevier Ltd. All rights reserved.