Doctoral Dissertation Research: An Ethnographic Study of Patient-Activism and an Emerging Illness

该奖项支持博士论文研究项目，对慢性疲劳综合征患者进行社会学研究。研究人员将试图了解患有这种综合症的人如何寻求他们身体体验的合法性，并在此过程中尝试将这种综合症作为生物医学内外的疾病付诸实践。该项目将建立在三年的初步研究基础上，这将是第一项使用参与者观察作为主要研究策略来研究该综合征的研究。研究人员将探讨在疲惫的身体面前可能存在的社会性形式，生物医学知识的分布以及当代美国医疗保健的分层性质。她还将探索围绕诊断术语形成的患者，医生，研究人员和机构之间的知识交流网络，并塑造其医疗化。这项研究的结果将在会议上提出，并发表在学术期刊上。研究人员还将向患者社区传播研究结果，向政策制定者提供政策文件，并继续与患者社区合作，制定进一步的政策解决方案。这项关于慢性疲劳综合征的民族志研究项目有望为科学技术研究、人类学和相关学科做出实质性贡献。研究人员将实时系统地记录症状转化为疾病的过程。这项研究的结果将有助于推进理论的症状在维持生物社会性的作用，提出了一个案例研究，其中病人的社会性出现没有共同的已知生物标志物。它有望有意义地推进理解病人的积极性在形成新的诊断和西方生物医学的分类内的新疾病的作用，以及病人运动成功或失败的原因。它还将通过将损伤理论化为集体行动的资源，促进正在进行的残疾研究中对身体的重新考虑。最后，它可能会提高人类学的现象学方法，可能会产生新的疾病形成理论。这个奖项反映了NSF的法定使命，并已被认为是值得通过使用基金会的智力价值和更广泛的影响审查标准进行评估的支持。

This award supports a doctoral dissertation research project to conduct a sociological study of people with chronic fatigue syndrome. The researcher will attempt to understand how people with this syndrome seek legitimation of their bodily experience, and in the process attempt to put into practice the syndrome as a disease in and beyond biomedicine. The project will build on three years of preliminary research, and it will be the first study to examine the syndrome using participant-observation as its primary research strategy. The researcher will inquire into the forms of sociality that are possible in the face of exhausted bodies, the distribution of biomedical knowledge, and the stratified nature of contemporary US healthcare. She will also explore networks of knowledge exchange among patients, doctors, researchers, and institutions that form around the diagnostic term and shape its medicalization. Results of this research are to be presented at conferences and published in academic journals. The researcher will also disseminate findings to the patient community, deliver a policy paper to policymakers, and continue to work with the patient community to develop further policy solutions. This ethnographic research project on chronic fatigue syndrome promises to make substantial contributions to Science and Technology Studies, Anthropology, and related disciplines. The researcher will systematically record in real-time the process by which symptoms are transformed into disease. The results of the study will serve to advance theories of the role of symptoms in sustaining biosociality by presenting a case study in which patient socialities emerge without known biomarkers in common. It promises to meaningfully advance understandings of the role of patient activism in the formation of novel diagnoses and new diseases within the taxonomies of Western biomedicine, and of the reasons that patient movements either succeed or fail. It will also contribute to ongoing reconsideration of the body in disability studies by theorizing impairment as a resource for collective action. Finally, it may enhance phenomenological approaches to anthropology in ways that may generate new theories of disease formation.This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.