ABSTRACT

Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) is a highly contested illness. This paper analyzes the discursive production of knowledge about, and recognition of ME/CFS. By mobilizing insights from social epistemology and epistemic injustice studies, this paper reveals how actors, through their social-discursive practices, attribute to establishing, sustaining, and disregarding their own and others’ epistemological position. In focusing on the case of the Dutch newspaper reporting about ME/CFS, this paper shows that the debate about this condition predominantly revolves around the ways in which people who make truth claims are represented. In being portrayed as gendered, affectatious, formerly very able, fanatical, or benevolent, people with ME/CFS are constructed as non-/credible. In the debate about what causes ME/CFS, by contrast, the production of non-/credible knowledge focuses more on the content of epistemic positions. Actors in this debate argue that they know the (clear) causes for the illness, something which functions as a discursive strategy to establish and enhance their credibility. This paper contends, however, that since this discursive demarcation of causes is consistently infused with uncertainty – with multi-interpretability, with diffuse explanations, and absence of current knowledge – the credibility of these actors’ epistemic position is undercut rather than established.

摘要

肌痛性脑脊髓炎 (ME)/慢性疲劳综合症 (CFS) 是一种备受争议的疾病。本文分析了 ME/CFS 知识的话语生产和认知。通过动员社会认识论和认识不公正研究的见解，本文揭示了行动者如何通过他们的社会话语实践，归因于建立、维持和忽视自己和他人的认识论立场。本文重点关注荷兰报纸报道 ME/CFS 的案例，表明有关这种情况的争论主要围绕提出真相主张的人的代表方式展开。ME/CFS 患者被描述为有性别特征、情感丰富、以前非常能干、狂热或仁慈，因此被认为是不可信的。在关于 ME/CFS 病因的争论中，相比之下，非/可信知识的产生更多地关注认知立场的内容。这场辩论的参与者声称他们知道疾病的（明确）原因，这可以作为建立和提高他们的可信度的话语策略。然而，本文认为，由于这种对原因的话语划分始终充满了不确定性——具有多重解释性、分散的解释以及缺乏当前知识——这些行动者的认知立场的可信度被削弱而不是建立。