From embodied risk to embodying hope: Therapeutic experimentation and experiential information sharing in a contested intervention for Multiple Sclerosis
People who pursue unproven therapies are often portrayed as ‘desperate’ individuals duped by medical racketeers peddling ‘false hope’. These patients, in contrast, present themselves as empowered citizens who have taken an informed decision to pursue an experimental therapy. This paper explores the latter perspective through the case of the so-called ‘liberation procedure’: a controversial endovascular intervention proposed as a treatment for Multiple Sclerosis (MS). Drawing on interviews with 48 people affected by MS, we analyse the decision-making processes and justifications thereof of those who had the procedure (n = 31). While the decision to have the intervention might not have been justified according to the standards of evidence-based medicine, it was nonetheless premised on a shared ‘experiential logic’ – conceptualised as a logic of embodied risk/hope – that extends beyond the specific condition and therapy in question. The paper explicates this logic, concentrating on patients’ negotiations of (a) risk and uncertainty; (b) expertise and evidence; and (c) hope and experiment. In particular, we foreground how, through a combination of therapeutic experimentation and experiential information sharing, patients turn their own bodies into (contested) sources of hope for themselves and others, which, in turn, shapes their embodied experiences of living with MS in the present.
Keywordsmultiple sclerosis hope risk experiment evidence experience
The authors would like to thank all our interviewees; without your generosity this research would not have been possible. We would also like to thank Kerri Cassidy for giving us permission to cite her YouTube video and for providing feedback on the final draft of the paper. Fadhila Mazanderani would like to thank the NIHR who provided funding for her work as part of the iPEx programme. She would also like to thank members of the iPEx programme for discussions that contributed to the ideas put forward in the paper, especially John Powell. The iPEx programme presents independent research funded by the NIHR under its Programme Grants for Applied Research funding scheme (RP-PG-0608-10147). The views expressed in this article are those of the authors, representing iPEx, and not necessarily those of the NHS, the NIHR or the Department of Health. Jenny Kelly would like to thank the Canadian Institutes of Health Research who provided funding through their Master’s Award: Frederick Banting and Charles Best Canada Graduate Scholarships (#218607). Andy Byford provided invaluable feedback on an early draft of the paper for which the authors are very grateful.
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