Messages in social media relating to CCSVI and MS: a longitudinal study

Background: Previous research reporting messages in social media showed that MS patients advocated for angioplasty to treat chronic cerebral spinal venous insufficiency (CCSVI), thought to be a source of hope associated with... [ view full abstract ]

Background:
Previous research reporting messages in social media showed that MS patients advocated for angioplasty to treat chronic cerebral spinal venous insufficiency (CCSVI), thought to be a source of hope associated with MS. Simultaneously the health care team were sceptical due to the lack of evidence. That work analysed Youtube videos over 20 months ending July 2011. Currently, it is not known if social media messages are unchanged.
Objectives: To determine if the group from the previous study continued reporting benefits, if a new cohort are using social media to report CCSVI treatment, and if perspectives have changed.
Methods:
This is a longitudinal study. The messages were reviewed from Youtube.com August 2011 -December 2014 and compared. Videos in English related to MS and CCSVI that involved a person with MS were included. Analysis used pre-defined code-book.
Results:
1269 videos about CCSVI were uploaded by people with MS. The last video uploaded by each person was included leaving 50 videos. Compared to the previous study, there is a 90.84% monthly decrease in the number of CCSVI videos uploaded. 64% were positive about treatment; 14% negative; 12% neutral and 10% not classified. 34% were recommending alternative treatments. There appears to be inconsistency between positive results, actual improvements in symptoms, and the overall messages reported.
Conclusions:
Youtube videos uploaded by MS patients has shifted in volume and message. OTs who face questions about CCSVI and its treatment for MS should be evidence-driven and compassionate in their response when guiding people with MS.