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“团结就是力量”:在虚拟符号社区中构建肌痛性脑脊髓炎

"United We Stand": Framing Myalgic Encephalomyelitis in a Virtual Symbolic Community.

作者信息

Lian Olaug S, Nettleton Sarah

机构信息

University of Tromsø-The Arctic University of Norway, Tromsø, Norway

University of Tromsø-The Arctic University of Norway, Tromsø, Norway University of York, York, United Kingdom.

出版信息

Qual Health Res. 2015 Oct;25(10):1383-94. doi: 10.1177/1049732314562893. Epub 2014 Dec 8.

Abstract

In this article, we report on a study that seeks to explore how the contested chronic condition myalgic encephalomyelitis (ME), one of the current medical diagnoses for medically unexplained long-term exhaustion, is negotiated within the context of Norwegian internet sites. From an analysis of discussions on 14 internet forums sustained by and for people living with ME, we seek to understand how their online activity sustains a virtual symbolic community (VSC). After exploring the content on these sites, we identified four discursive domains, or fields of conversation, that are demarcated by a discursive frame, or norms, values, and goals that define and reinforce the boundaries of the community. Interpreting discursive domains and their discursive frame provides insight not only to the culture of the ME VSC but also to its role in an international social health movement, including its potential for becoming politically influential.

摘要

在本文中,我们报告了一项研究,该研究旨在探讨当前用于解释长期不明原因疲劳的医学诊断之一——备受争议的慢性疾病肌痛性脑脊髓炎(ME),在挪威互联网网站的背景下是如何被协商的。通过对由ME患者创建并为其服务的14个互联网论坛上的讨论进行分析,我们试图了解他们的在线活动如何维系一个虚拟符号社区(VSC)。在探究了这些网站上的内容后,我们识别出了四个话语领域,即对话领域,它们由一个话语框架界定,该框架包括定义并强化社区边界的规范、价值观和目标。解读话语领域及其话语框架不仅能洞察ME虚拟符号社区的文化,还能了解其在国际社会健康运动中的作用,包括其在政治上产生影响的潜力。

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