“Waiting for the Science to Catch up with the Practice”: A More Cautious Trend in Social Media Discussions of Ccsvi Treatment for Multiple Sclerosis
Previous research, carried out at this lab, showed that many people- both patients and health professionals- advocated for angioplasty treatment for symptom control in multiple sclerosis (MS). From analyzing videos uploaded to YouTube.com between October 2009 and July 2011, it was found that 86% of participants reported improvements in function following treatment for chronic cerebrospinal venous insufficiency (CCSVI).
To determine if this group of participants were still reporting benefits of the treatment, if a new cohort of participants are using social media to report on CCSVI treatment, and if perspectives on CCSVI have changed in recent years.
There were two stages of data collection a. follow-up search for videos (after July 2011) on participants identified in the previous study’s dataset (group 1) and b. videos uploaded by new participants between August 2011 and December 2014 (group 2). Videos were included if they were related to MS and CCSVI, were in English and involved a person with MS. Conference proceedings and promotional videos were excluded. The videos were analyzed using a pre-defined code book.
Group 1: Of the 1789 videos from the previous study, 621 videos were uploaded by 293 people with MS. From these, 106 people with MS uploaded between 1-197 new videos since July 2011 of which 30 videos (one video per participant) talk about the impact of treatment for CCSVI and were included.
Group 2: A new search of videos related to CCSVI (August 2011 to December 2014) provided 651 new uploads. Only 20 videos met the inclusion criteria.
Combining the groups and comparing with the previous study, there is 89.34% decrease in the number of new CCSVI videos being uploaded per month (1.25 videos/month since July 2011 vs 13.32 videos/month prior to July 2011 ).
Participants’ expectations of the treatment has changed due as the longer-term results have been disappointing with some now happy to “wait for the science to catch up with the practice”. Others continue to report on benefits, especially in the short-term, but there is an air of caution that now surrounds the so-called “liberation therapy”.
Social media has shifted in its volume and messages about CCSVI and its treatment. As increased experience about CCSVI treatment has not yielded the expected results, practitioners who may be faced with pressure to provide unproven treatments in the future should be understanding but evidence-driven when supporting therapies in MS.