Abstract
BackgroundScientific and financial investments in chronic cerebrospinal venous insufficiency (CCSVI) research have been made to address both the hope for and scepticism over this interventional strategy for MS. Despite limited evidence in support of the CCSVI hypothesis, the funding of clinical research was responsive to a demand by the public rarely seen in the history of medicine. We characterize patient perspectives about the CCSVI research trajectory, with particular attention to its impact on other non-pharmaceutical areas of MS research with a focus on stem cell interventions.MethodsSemi-structured interviews with 20 MS patients across Canada who did not have CCSVI interventions. Interviews were analysed for recurring themes and individual variations using the constant comparative approach.ResultsParticipants had a critical view of the divestment of funds from longstanding research to support CCSVI trials. They retain a sense of optimism, however, about emerging evidence for stem cell interventions for MS, and highlight the need for greater caution and conscientious communication of advances in medicine and science.ConclusionsThe unrealized hopes for CCSVI challenged but did not undermine the resilience of patient communities. The narrative that unfolded highlights the importance of drawing a socially-minded space for public participation in science.
Highlights
Scientific and financial investments in chronic cerebrospinal venous insufficiency (CCSVI) research have been made to address both the hope for and scepticism over this interventional strategy for multiple sclerosis (MS)
The chronic cerebrospinal venous insufficiency (CCSVI) hypothesis became a focus for multiple sclerosis (MS) research when a small study suggested that an angioplastylike procedure would restore efficient haemodynamic flow, reduce iron deposits in the brain, and prevent related inflammation and myelin sheath attack [1, 2]
We focus here on the four major themes – grasping on to hope, costs of CCSVI research, enduring optimism, lessons learned – and eight subthemes (Table 2) that were generated by participant narratives
Summary
Scientific and financial investments in chronic cerebrospinal venous insufficiency (CCSVI) research have been made to address both the hope for and scepticism over this interventional strategy for MS. The chronic cerebrospinal venous insufficiency (CCSVI) hypothesis became a focus for multiple sclerosis (MS) research when a small study suggested that an angioplastylike procedure would restore efficient haemodynamic flow, reduce iron deposits in the brain, and prevent related inflammation and myelin sheath attack [1, 2]. Despite initial studies that challenged the CCSVI hypothesis [3, 4], the intervention—sometimes termed liberation therapy—was prevalent in the public sphere through wide-reaching anecdotal accounts of therapeutic gain described in social media, and through advocacy. Recent results from a multi-site Canadian CCSVI clinical trial demonstrate negative results in 104 MS patients [8]
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