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      Scientific Versus Experiential Evidence: Discourse Analysis of the Chronic Cerebrospinal Venous Insufficiency Debate in a Multiple Sclerosis Forum

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          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.

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          Most cited references 29

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          A Theory of Cognitive Dissonance.

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            An uneasy relationship: the tensions between medicine and the media.

             BARRY NELKIN (1996)
            The enduring tensions between medicine and the media are largely due to the different perspectives of biomedical scientists and journalists, as this final essay in the series on medicine and the media underscores. These tensions arise because of perceived differences in defining science news, conflicts over styles of science reporting, and most of all disagreement about the role of the media. In the 1990s, scientists are especially concerned by media messages that question their credibility. Since scientists and journalists depend on each other in the communication of science and the shaping of the public meaning of science and medicine, the tensions are likely to increase.
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              The clinical course of multiple sclerosis.

              Knowledge of the epidemiology and natural history of multiple sclerosis (MS) is essential for practitioners and patients to make informed decisions about their care. This knowledge, in turn, depends upon the findings from reliable studies (i.e., those which adhere to the highest methodological standards). For a clinically variable disease such as MS, these standards include case ascertainment using a population-based design; a large-sized sample of patients, who are followed for a long time-period in order to provide adequate statistical power; a regular assessment of patients that is prospective, frequent, and standardized; and the application of rigorous statistical techniques, taking into account confounding factors such as the use of disease modifying therapy or the age at clinical onset. In this chapter we review the available epidemiologic and natural history data as it relates clinical issues such as the likelihood of incomplete recovery from a first attack; the likelihood and time course of a second attack; the likelihood and time course of disease progression and the accumulation of irreversible disability; the disease prognosis based both upon the clinical nature and presentation of the first episode and upon the initial disease course; and the impact of disease on mortality. In addition, these studies provide insight to the pathophysiologic mechanisms underlying the course and prognosis of MS. Studies of the Lyon cohort have been particularly helpful in this regard and observations from this cohort have led to the hypothesis that, in large part, the accumulation of disability in MS is an age-related process, which is independent of the clinical subtype of MS (i.e., relapsing-remitting, primary progressive, secondary progressive, or relapsing progressive). And finally, we consider briefly the impact of various life events (e.g., pregnancy, infection, vaccination, trauma, and stress) on the clinical course of disease. © 2014 Elsevier B.V. All rights reserved.
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                Author and article information

                Contributors
                Journal
                J Med Internet Res
                J. Med. Internet Res
                JMIR
                Journal of Medical Internet Research
                JMIR Publications Inc. (Toronto, Canada )
                1439-4456
                1438-8871
                July 2015
                01 July 2015
                : 17
                : 7
                Affiliations
                1Department of General Practice University Medical Center Göttingen GöttingenGermany
                2Department of Medical Statistics University Medical Center Göttingen GöttingenGermany
                3Institute of Computer Science Georg-August- University Göttingen GöttingenGermany
                Author notes
                Corresponding Author: Janka Koschack jkoscha@ 123456gwdg.de
                Article
                v17i7e159
                10.2196/jmir.4103
                4526971
                26133525
                ©Janka Koschack, Lara Weibezahl, Tim Friede, Wolfgang Himmel, Philip Makedonski, Jens Grabowski. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 01.07.2015.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.

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