Scientific versus experiential evidence: Discourse analysis of the CCSVI debate in a multiple sclerosis forum

Janka Koschack, Lara Weibezahl, Tim Friede, Wolfgang Himmel, Philip Makedonski, Jens Grabowski


Background: The vascular hypothesis of multiple sclerosis (MS), called chronic cerebrospinal venous insufficiency (CCSVI), and its treatment had been immediately rejected by experts but enthusiastically gripped by patients who shared their experiences with other patients worldwide by use of social media, such as patient online forums. Contradictions between scientific information and lay experiences may become a source of distress for MS patients but we do not know how patients perceive and deal with these contradictions. Objectives: We aimed to understand whether scientific and experiential knowledge were experienced as contradictory in MS patient online forums and, if so, how these contradictions were resolved and how patients 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 patient online forum of the German MS 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 1,907 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 which can explain how users took part in the CCSVI discussion. Results: There was an emotionally charged debate about CCSVI which could be generalized to two 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, that is, scientists or rather fellow-sufferers or no one at all was of fundamental significance. Four discourse positions could be identified by arranging them to the dimensions “trust in evidence-based knowledge”, “trust in experience-based knowledge”, and “subjectivity”, that is, the emotional character of contributions manifested by the use of popular rhetoric that seemed to mask a deep personal involvement. Conclusion: By critical discourse analysis of the CCSVI discussion in a patient 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 naïve trust in experiential knowledge. Instead, it might be an indication of cognitive dissonance reduction to protect oneself against contradictory information.
multiple sclerosis; venous insufficiency; Internet; social media; cognitive dissonance; qualitative research
Document Type: 
Journal Articles
Journal of Medical Internet Research
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