Scientific Versus Experiential Evidence: Discourse Analysis of the Chronic XXXX Debate in a @entity15 Forum.

@entity1 @entity15 @entity4096
BACKGROUND: The vascular hypothesis of @entity15 ( @entity15 ), called chronic @entity4096 (CCSVI), and its treatment (known as liberation therapy) was immediately rejected by experts but enthusiastically gripped by @entity1 who shared their experiences with other @entity1 worldwide by use of social media, such as @entity1 online forums. Contradictions between scientific information and lay experiences may be a source of distress for @entity15 @entity1 , but we do not know how @entity1 perceive and deal with these contradictions. OBJECTIVE: We aimed to understand whether scientific and experiential knowledge were experienced as contradictory in @entity15 @entity1 online forums and, if so, how these contradictions were resolved and how @entity1 tried to reconcile the CCSVI debate with their own illness history and experience. METHODS: By using critical discourse analysis, we studied CCSVI-related posts in the @entity1 online forum of the German @entity15 Society in a chronological order from the first post mentioning CCSVI to the time point when saturation was reached. For that time period, a total of 117 CCSVI-related threads containing 1907 posts were identified. We analyzed the interaction and communication practices of and between individuals, looked for the relation between concrete subtopics to identify more abstract discourse strands, and tried to reveal discourse positions explaining how users took part in the CCSVI discussion. RESULTS: There was an emotionally charged debate about CCSVI which could be generalized to 2 discourse strands: (1) the "downfall of the professional knowledge providers" and (2) the "rise of the nonprofessional treasure trove of experience." The discourse strands indicated that the discussion moved away from the question whether scientific or experiential knowledge had more evidentiary value. Rather, the question whom to trust (ie, scientists, fellow sufferers, or no one at all) was of fundamental significance. Four discourse positions could be identified by arranging them into the dimensions "trust in evidence-based knowledge," "trust in experience-based knowledge," and "subjectivity" (ie, the emotional character of contributions manifested by the use of popular rhetoric that seemed to mask a deep personal involvement). CONCLUSIONS: By critical discourse analysis of the CCSVI discussion in a @entity1 online forum, we reconstruct a lay discourse about the evidentiary value of knowledge. We detected evidence criteria in this lay discourse that are different from those in the expert discourse. But we should be cautious to interpret this dissociation as a sign of an intellectual incapability to understand scientific evidence or a na  ve trust in experiential knowledge. Instead, it might be an indication of cognitive dissonance reduction to protect oneself against contradictory information.
