Dumit Joseph
Program in Science, Technology & Society, Massachusetts Institute of Technology, E51-296D MIT, Cambridge, MA 02139-4307, USA.
Soc Sci Med. 2006 Feb;62(3):577-90. doi: 10.1016/j.socscimed.2005.06.018. Epub 2005 Aug 8.
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.
慢性疲劳综合征和多重化学物质敏感症是两类充斥着医学、社会和政治不确定性的疾病。本文探讨了在美国围绕这些新出现的、存在争议的疾病的斗争中，事实是如何被谈论和体验的。主要基于大量互联网新闻组帖子存档，以及实地调查和已发表的辩论，研究发现：（1）患者描述他们因缺乏生物学事实而通过官僚主义的排斥类别被拒绝医疗保健和合法性的经历；（2）机构通过利用科学的开放性在口头上管理这些排斥，以否认新事实的有效性；（3）患者集体行动通过存档这些排斥的系统性本质并制定反击策略来做出回应。结果是所有相关方都维持了这些代价高昂的斗争。
