title: Scientific Versus Experiential Evidence: Discourse Analysis of the Chronic Cerebrospinal Venous Insufficiency Debate in a Multiple Sclerosis Forum.
abstract: BACKGROUND
  The vascular hypothesis of multiple sclerosis (MS), called chronic cerebrospinal venous insufficiency (CCSVI), and its treatment (known as liberation therapy) was 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 be a source of distress for MS patients, but we do not know how patients perceive and deal with these contradictions.
  
  
  OBJECTIVE
  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 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 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.
authors.affiliation: Department of General Practice, University Medical Center Göttingen, Göttingen, Germany. jkoscha@gwdg.de.
authors.forename: Janka
authors.identifier: http://orcid.org/0000-0002-7063-2092
authors.initials: J
authors.lastname: Koschack
authors.forename: Lara
authors.identifier: http://orcid.org/0000-0002-2001-5483
authors.initials: L
authors.lastname: Weibezahl
authors.forename: Tim
authors.identifier: http://orcid.org/0000-0001-5347-7441
authors.initials: T
authors.lastname: Friede
authors.forename: Wolfgang
authors.identifier: http://orcid.org/0000-0003-3523-5486
authors.initials: W
authors.lastname: Himmel
authors.forename: Philip
authors.identifier: http://orcid.org/0000-0001-7752-0029
authors.initials: P
authors.lastname: Makedonski
authors.forename: Jens
authors.identifier: http://orcid.org/0000-0003-2994-3531
authors.initials: J
authors.lastname: Grabowski
mesh_terms: D002908:Chronic Disease; D019317:Evidence-Based Medicine; D006801:Humans; D020407:Internet; D009103:Multiple Sclerosis / Q000628:therapy*; D017060:Patient Satisfaction; D061108:Social Media; D013116:Spinal Cord / Q000098:blood supply; D014689:Venous Insufficiency / Q000628:therapy*
keywords: Internet; cognitive dissonance; multiple sclerosis; qualitative research; social media; venous insufficiency