Contesting Medical Miracles: A Collective Action Framing Analysis of CCSVI and Venous Angioplasty (“Liberation Therapy”) for People With Multiple Sclerosis in News and Social Media

Abstract

This study examines how a medically contested procedure for people living with multiple sclerosis was framed by the news media and challenged by user-generated Facebook content. While expected narrative patterns ensued (advocates being positive and the scientific community being cautious), embedded were collective action oppositional frames that forced shifts in scientific and policy decisions that defied standard evidentiary support in Canada. Medical experts and researchers need to engage in more effective science communication about the nature of the research process and engage affected health communities more in the research agenda, particularly for conditions characterized by considerable unmet need.