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Int J MS Care. 2016 Mar-Apr;18(2):49-57. doi: 10.7224/1537-2073.2014-073.

Social Media Representation of Chronic Cerebrospinal Venous Insufficiency Intervention for Multiple Sclerosis.

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1
School of Rehabilitation Therapy, Queen's University, Kingston, ON, Canada (SG); Department of Occupational Therapy, University of Social Welfare and Rehabilitation Sciences, Tehran, Iran (SG); and Department of Occupational Science and Occupational Therapy, University of British Columbia, Vancouver, BC, Canada (SJF).

Abstract

BACKGROUND:

We conducted a rigorous review of videos related to multiple sclerosis (MS) and chronic cerebrospinal venous insufficiency (CCSVI) treatment posted by people with MS on one social media website (YouTube) that describe symptoms before and after the surgical procedure, as well as videos presented by health-care professionals (HCPs).

METHODS:

All relevant videos posted from December 2009 to July 2011 were downloaded, viewed, and systematically organized. Categorical data were classified, and dominant messages were gleaned.

RESULTS:

A total of 1789 videos were extracted. A total of 621 videos by people with MS and 238 by HCPs were included. Eighty-six percent of people with MS anecdotally reported experiencing some improvement in at least one symptom. The most common message was that "CCSVI is not a miracle but worth trying." Most HCPs posting videos recommended the procedure but called for continued research.

CONCLUSIONS:

Social media are conveying an anecdotal favorable message about CCSVI treatment for MS. The relative absence of videos offering a negative or more balanced perspective is a concern. Social persuasion through these videos creates a strong positive impression of CCSVI treatment, but the videos do not acknowledge the lack of supporting scientific evidence and the possible role of the placebo effect. Given the strong influence of social media on health-care decision making, researchers and clinicians should actively use social media to reach out to people with MS and describe the state of the evidence for MS treatments, both positive and negative.

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