BioSocieties

, Volume 13, Issue 1, pp 232–254 | Cite as

From embodied risk to embodying hope: Therapeutic experimentation and experiential information sharing in a contested intervention for Multiple Sclerosis

Original Article

Abstract

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.

Keywords

multiple sclerosis hope risk experiment evidence experience 

Notes

Acknowledgements

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.

References

  1. Adams, V., Murphy, M. and Clarke, A.E. (2009) Anticipation: Technoscience, life, affect, temporality. Subjectivity 28: 246–265.CrossRefGoogle Scholar
  2. Adamson, C. (1997) Existential and clinical uncertainty in the medical encounter: An idiographic account of an illness trajectory defined by Inflammatory Bowel Disease and Avascular Necrosis. Sociology of Health and Illness 19(2): 133–159.CrossRefGoogle Scholar
  3. Baracchini, C., Valdueza, J.M., Del Sette, M., Baltgaile, G., Bartels, E., Bornstein, N.M. and Klingelhoefer, J. (2012) CCSVI and MS: A statement from the European Society of Neurosonology and Cerebral Hemodynamics. Journal of Neurology 259(12): 2585–2589.CrossRefGoogle Scholar
  4. BBC (2011) Concerns about controversial MS treatment. 7 March, http://www.bbc.co.uk/news/health-12637191, accessed 12 November 2016.
  5. Bell, D., Holliday, R. Ormond, M. and Mainil, T. (2015) Transnational healthcare, cross-border perspectives. Social Science and Medicine 124: 284–289.CrossRefGoogle Scholar
  6. Berg, B.L. (2009) Qualitative Research Methods for the Social Sciences. 7th edition. Boston, MA: Pearson.Google Scholar
  7. Berlant, L. (2011) Cruel Optimism. Durham, NC: Duke University Press Books.CrossRefGoogle Scholar
  8. Botterill, D., Pennings, G. and Mainil, T. (eds.) (2013) Medical Tourism and Transnational Health Care. Basingstoke: Palgrave Macmillan.Google Scholar
  9. Bowling, A.C. (2011) Complementary and alternative medicine and multiple sclerosis. Neurologic Clinics 29(2): 465–480.CrossRefGoogle Scholar
  10. Callon, M. and Rabeharisoa, V. (2003) Research ‘in the wild’ and the shaping of new social identities. Technology in Society 25(2): 193–204.CrossRefGoogle Scholar
  11. Caron-Flinterman, J.F., Broerse, J.E.W. and Bunders, J.F.G. (2005) The experiential knowledge of patients: A new resource for biomedical research? Social Science and Medicine 60(11): 2575–2584.CrossRefGoogle Scholar
  12. Chafe, R., Born, K.B., Slutsky, A.S. and Laupacis, A. (2011) The rise of people power. Nature 472(7344): 410–411.CrossRefGoogle Scholar
  13. CIHR (2011) Systematic reviews of the evidence regarding chronic cerebral spinal venous insufficiency (CCSVI) and multiple sclerosis – Summary of second report for CIHR expert panel, November 21, http://www.cihr-irsc.gc.ca/e/44559.html?=undefined&wbdisable=false, accessed 12 November 2016.
  14. Collins, H. and Evans, R. (2002) The third wave of science studies: Studies of expertise and experience. Social Studies of Science 32(2): 235–296.CrossRefGoogle Scholar
  15. Compston, A. and Coles, A. (2008) Multiple Sclerosis. Lancet 372(9648): 1502–1517.CrossRefGoogle Scholar
  16. Cooper, M. and Waldby, C. (2014) Clinical Labor: Tissue Donors and Research Subjects in the Global Bioeconomy. Durham, NC: Duke University Press.CrossRefGoogle Scholar
  17. Di Blasi, Z., Harkness, E., Ernst, E., Georgiou, A. and Kleijnen, J. (2001) Influence of context effects on health outcomes: A systematic review. Lancet 357(9258): 757–762.CrossRefGoogle Scholar
  18. Doepp, F., Paul, F., Valdueza, J.M., Schmierer, K. and Schreiber, S.J. (2010) No cerebrocervical venous congestion in patients with multiple sclerosis. Annals of Neurology 68(2): 173–183.Google Scholar
  19. Epstein, S. (1995) The construction of lay expertise: AIDS activism and the forging of credibility in the reform of clinical trials. Science, Technology and Human Values 20(4): 408–437.CrossRefGoogle Scholar
  20. Epstein, S. (1996) Impure Science: AIDS, Activism and the Politics of Knowledge. Berkeley: University of California Press.Google Scholar
  21. Fayerman, P. (2013) The final curtain on CCSVI and liberation therapy for multiple sclerosis. Vancouver Sun (2013), 10 October, http://vancouversun.com/news/staff-blogs/the-final-curtain-on-ccsvi-and-liberation-therapy-for-multiple-sclerosis, accessed 12 November 2016.
  22. FDA (2012) News alert: FDA issues alert on potential dangers of unproven treatment for multiple sclerosis, 10 May, http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm303538.htm, accessed 12 November 2016.
  23. Foucault, M. (1991) Politics and the study of discourse. In G. Burchell et al. (eds.) The Foucault Effect: Studies in Governmentality. London: Harvester Wheat-sheaf, pp. 53–72.Google Scholar
  24. Gafson, A.R. and Giovannoni, G. (2014) CCSVI: A call to clinicians and scientists to vocalise in an internet age. Multiple Sclerosis and Related Disorders 3(2): 143–146.CrossRefGoogle Scholar
  25. Grady, D. (2010) From MS patients, outcry for unproved treatment. New York Times, 28 June.Google Scholar
  26. Hakim E.A., Bakheit A.M.O., Bryant T.N., Roberts M.W.H., McIntosh-Michaelis S.A., Spackman A.J., Martin J.P. and McLellan D.L. (2000) The social impact of multiple sclerosis: A study of 305 patients and their relatives. Disability and Rehabilitation 22(April): 288–293.CrossRefGoogle Scholar
  27. Hamilton, R.J. and Bowers, B.J. (2006) Internet recruitment and e-mail interviews in qualitative studies. Qualitative Health Research 16(6): 821–835.CrossRefGoogle Scholar
  28. Heaton, J. (2004) Reworking Qualitative Data. London: Sage.CrossRefGoogle Scholar
  29. Hoppenbrouwers, I.A. and Hintzen, R.Q. (2011) Genetics of multiple sclerosis. Biochimica et Biophysica Acta (BBA) - Molecular Basis of Disease, Molecular Basis of Multiple Sclerosis, 1812(2): 194–201.CrossRefGoogle Scholar
  30. Johnson, A.G (1994) Surgery as a Placebo. Lancet 344(8930): 1140–1142.CrossRefGoogle Scholar
  31. Kavanagh, A.M. and Broom, D. H. (1998) Embodied risk: My body, myself? Social Science and Medicine 46(3): 437–444.CrossRefGoogle Scholar
  32. Koschack, J., Weibezahl, L., Friede, T. Himmel, W., Makedonski, P. and Grabowski, J. (2015) Scientific versus experiential evidence: Discourse analysis of the chronic cerebrospinal venous insufficiency debate in a multiple sclerosis forum. Journal of Medical Internet Research 17(7): e159.CrossRefGoogle Scholar
  33. Laupacis, A. and Slutsky, A.S. (2010) Endovascular treatment for multiple sclerosis: The intersection of science, policy and the public. Open Medicine 4: e197–199.Google Scholar
  34. Laupacis, A., Lillie, E., Dueck, A., Straus, S. Perrier, L., Burton, J.M., Aviv, R., Thorpe, K., Feasby, T. and Spears, J. (2011) Association between chronic cerebrospinal venous insufficiency and multiple sclerosis: A meta-analysis. Canadian Medical Association Journal 183(16): E1203–E1212.CrossRefGoogle Scholar
  35. Lexell, E.M., Larsson Lund, M. and Iwarsson, S. (2009) Constantly changing lives: Experiences of people with multiple sclerosis. The American Journal of Occupational Therapy 63(6): 772–781.CrossRefGoogle Scholar
  36. Lupton, D. and Tulloch, J. (2002) ‘Risk is part of your life’: Risk epistemologies among a group of Australians. Sociology 36(2): 317–334.CrossRefGoogle Scholar
  37. Mattingly, C. (2010) The Paradox of Hope: Journeys Through a Clinical Borderland. Berkeley: University of California Press.Google Scholar
  38. Mayer, C. A., Pfeilschifter, W. Lorenz, M.W., Nedelmann, M. Bechmann, I., Steinmetz, H. and Ziemann, U. (2011) The perfect crime? CCSVI not leaving a trace in MS. Journal of Neurology, Neurosurgery and Psychiatry 82(4): 436–440.CrossRefGoogle Scholar
  39. Mazanderani, F., O’Neill, B. and Powell, J. (2013) ‘People power’ or ‘pester power’? YouTube as a forum for the generation of evidence and patient advocacy. Patient Education and Counseling 93(3): 420–425.CrossRefGoogle Scholar
  40. McCoyd, J.L.M. and Schwaber Kerson, T. (2006) Conducting intensive interviews using email a Serendipitous comparative opportunity. Qualitative Social Work 5(3): 389–406.CrossRefGoogle Scholar
  41. Meakins, J.L. (2002) Innovation in surgery: The rules of evidence. The American Journal of Surgery 183(4): 399–405.CrossRefGoogle Scholar
  42. Miyazaki, H. (2006) The Method of Hope: Anthropology, Philosophy, and Fijian Knowledge. Stanford: Stanford University Press.Google Scholar
  43. Mol, A. (2008) The Logic of Care: Health and the Problem of Patient Choice. Abingdon: Routledge.Google Scholar
  44. Moreira, T. and Palladino, P. (2005) Between truth and hope: On Parkinson’s disease, neurotransplantation and the production of the ‘self’. History of the Human Sciences 18(3): 55–82.CrossRefGoogle Scholar
  45. Mulholland, A. (2017) Study finds MS vein therapy ineffective, questions remain. CTV News, 8 March, http://www.ctvnews.ca/health/study-finds-ms-vein-therapy-ineffective-questions-remain-1.3315927, accessed 18 March 2017.
  46. Murdoch, C.E. and Scott, C.T. (2010) Stem cell tourism and the power of hope. The American Journal of Bioethics 10(5): 16–23.CrossRefGoogle Scholar
  47. NICE (2012) Percutaneous venoplasty for chronic cerebrospinal venous insufficiency for multiple sclerosis: Interventional procedures guidance [IPG420]. March, https://www.nice.org.uk/guidance/ipg420, accessed 12 November 2016.
  48. Nicolson, M. and McLaughlin, C. (1988) Social constructionism and medical sociology: A study of the vascular theory of multiple sclerosis. Sociology of Health and Illness 10(3): 234–261.CrossRefGoogle Scholar
  49. Nicolson, M. and Lowis, G.W. (2002) The early history of the Multiple Sclerosis Society of Great Britain and Northern Ireland: A socio-historical study of lay/practitioner interaction in the context of a medical charity. Medical History 46(2): 141–174.Google Scholar
  50. Novas, C. (2006) The political economy of hope: Patients’ organizations, science and biovalue. BioSocieties 1(03): 289–305.CrossRefGoogle Scholar
  51. Ong, L.M.L., de Haes, J.C., Hoos, A.M. and Lammes, F.B. (1995) Doctor-patient communication: A review of the literature. Social Science and Medicine 40(7): 903–918.CrossRefGoogle Scholar
  52. Petersen, A., Seear, K. and Munsie, M. (2014) Therapeutic journeys: The hopeful travails of stem cell tourists. Sociology of Health and Illness 36(5): 670–685.CrossRefGoogle Scholar
  53. Petersen, A., Tanner, C. and Munsie, M. (2015) Between hope and evidence: How community advisors demarcate the boundary between legitimate and illegitimate stem cell treatments.” Health 19(2): 188–206.CrossRefGoogle Scholar
  54. Petersen, A. and Wilkinson, I (2015) Editorial introduction: The sociology of hope in contexts of health, medicine, and healthcare. Health 19(2): 11318.Google Scholar
  55. Ploughman, M., Harris, C., Hogan, S.H., Murray, C., Murdoch, M., Austin, M.W. and Stefanelli, M. (2014) Navigating the ‘liberation procedure’: A qualitative study of motivating and hesitating factors among people with multiple sclerosis. Patient Preference and Adherence 8: 1205–1213.CrossRefGoogle Scholar
  56. Prasad, A. (2015) Ambivalent journeys of hope: Embryonic stem cell therapy in a clinic in India. Health 19(2): 137–153.CrossRefGoogle Scholar
  57. Rabeharisoa, V., Moreira, T. and Akrich, M. (2014) Evidence-based activism: Patients’, users’ and activists’ groups in knowledge society. BioSocieties 9(2): 111–128.CrossRefGoogle Scholar
  58. Ratislavová, K. and Ratislav, J. (2014) Asynchronous email interview as a qualitative research method in the humanities. Human Affairs 24(4): 452–460.CrossRefGoogle Scholar
  59. Reekers, J.A. (2012) CCSVI and MS: A neverending story. European Journal of Vascular and Endovascular Surgery 43: 127–128.CrossRefGoogle Scholar
  60. Rhodes, M.A. (2011) CCSVI as the Cause of Multiple Sclerosis: The Science Behind the Controversial Theory. Jefferson: McFarland & Co Inc.Google Scholar
  61. Rhodes, T., Bernays, S. and Janković Terzić, K. (2009) Medical promise and the recalibration of expectation: Hope and HIV treatment engagement in a transitional setting. Social Science and Medicine 68(6): 1050–1059.CrossRefGoogle Scholar
  62. Robinson, I. (1990) Personal narratives, social careers and medical courses: Analysing life trajectories in autobiographies of people with multiple sclerosis. Social Science and Medicine 30(11): 1173–1186.CrossRefGoogle Scholar
  63. Rothwell, P.M., McDowell, Z., Wong, C.K. and Dorman, P.J. (1997) Doctors and patients don’t agree: Cross sectional study of patients’ and doctors’ perceptions and assessments of disability in multiple sclerosis. British Medical Journal 314: 1580–1580.CrossRefGoogle Scholar
  64. Shapiro, A.K. and Shapiro, E. (1997) The Placebo: Is it Much Ado about Nothing? In A. Harrington (ed.) The Placebo Effect. Cambridge MA: Harvard University Press, pp. 12–36.Google Scholar
  65. Snyder, J., Adams, K., Crooks, V.A., Whitehurst, D. and Vallee, J. (2014) ‘I knew what was going to happen if I did nothing and so I was going to do something’: Faith, hope, and trust in the decisions of Canadians with multiple sclerosis to seek unproven interventions abroad. BMC Health Services Research 14: 445.CrossRefGoogle Scholar
  66. Song, P. (2010) Biotech pilgrims and the transnational quest for stem cell cures. Medical Anthropology 29(4): 384–402.CrossRefGoogle Scholar
  67. Sosnowy, C. (2014) Practicing patienthood online: Social media, chronic illness, and lay expertise. Societies 4(2): 316–329.CrossRefGoogle Scholar
  68. Stewart, D.C., and Sullivan, T.J. (1982) Illness behavior and the sick role in chronic disease: The case of multiple sclerosis. Social Science and Medicine 16(15): 1397–1404.CrossRefGoogle Scholar
  69. Stolz, E. (2015) Chronic cerebrospinal venous insufficiency: The end of ‘the big idea’? Brain and Behavior 5(1): 1–2.CrossRefGoogle Scholar
  70. Sudau, F., Friede, T., Grabowski, J., Koschack, J., Makedonski, P. and Himmel, W. (2014) Sources of information and behavioral patterns in online health forums: Observational study. Journal of Medical Internet Research 16(1): e10.CrossRefGoogle Scholar
  71. Traboulsee, A.L., Knox, K.B. Machan, L., Zhao, Y., Yee, I., Rauscher, A. and Klass, D. (2014) Prevalence of extracranial venous narrowing on catheter venography in people with multiple sclerosis, their siblings, and unrelated healthy controls: A blinded, case-control study. Lancet 383(9912): 138–145.CrossRefGoogle Scholar
  72. Trojano, M., Paolicelli, D., Bellacosa, A. and Cataldo, S. (2003) The transition from relapsing-remitting MS to irreversible disability: Clinical evaluation. Neurological Sciences 24(5): s268–s270.CrossRefGoogle Scholar
  73. Tsivgoulis, G., Faissner, S. Voumvourakis, K., Katsanos, A.H., Triantafyllou, N., Grigoriadis, N., Gold, R. and Krogias, C. (2015) ‘Liberation treatment’ for chronic cerebrospinal venous insufficiency in multiple sclerosis: The truth will set you free. Brain and Behavior 5(1): 3–12.CrossRefGoogle Scholar
  74. Turner, L. (2007) ‘First world health care at third world prices’: Globalization, bioethics and medical tourism. BioSocieties 2(3): 303–325.CrossRefGoogle Scholar
  75. Ubelacker, S. (2012) US FDA warns against controversial liberation therapy for MS. National Post, 10 May, http://news.nationalpost.com/news/u-s-fda-warns-against-controversial-liberation-therapy-for-ms, accessed 12 November 2016.
  76. Vera, C., Herr, A., Mandato, K., Englander, M., Ginsburg, L. and Siskin, G.P. (2012) Internet-based social networking and its role in the evolution of chronic cerebrospinal venous insufficiency. Techniques in Vascular and Interventional Radiology 15(2): 153–157.Google Scholar
  77. Whelan, E. (2007) ‘No one agrees except for those of us who have it’: endometriosis patients as an epistemological community. Sociology of Health and Illness 29(7): 957–982.CrossRefGoogle Scholar
  78. Whittaker, A., Manderson, L. and Cartwright, E. (2010) Patients without borders: Understanding medical travel. Medical Anthropology 29(4): 336–343.CrossRefGoogle Scholar
  79. Wilkerson, J.M., Iantaffi, A., Grey, J.A., Bockting, W.O. and Rosser, B.R.S. (2014) Recommendations for internet-based qualitative health research with hard-to-reach populations.” Qualitative Health Research 24(4): 561–574.CrossRefGoogle Scholar
  80. Wong, C., Fox, R. and Rae-Grant, A. (2012) The history of the vascular theories of multiple sclerosis (S59.006). Neurology 78 (Meeting Abstracts 1): S59.006.Google Scholar
  81. Zamboni, P. (2006) The big idea: Iron-dependent inflammation in venous disease and proposed parallels in multiple sclerosis. Journal of the Royal Society of Medicine 99(11): 589–593.CrossRefGoogle Scholar
  82. Zamboni, P., Galeotti, R. Menegatti, E., Malagoni, A.M., Gianesini, S. Bartolomei, I., Mascoli, F. and Salvi, F. (2009a) A prospective open-label study of endovascular treatment of chronic cerebrospinal venous insufficiency. Journal of Vascular Surgery 50(6): 1348–1358.CrossRefGoogle Scholar
  83. Zamboni, P., Galeotti, R., Menegatti, E., Malagoni, A.M., Tacconi, G., Dall’Ara, S., Bartolomei, I. and Salvi, F. (2009b) Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis. Journal of Neurology, Neurosurgery, and Psychiatry 80(4): 392–399.CrossRefGoogle Scholar

Copyright information

© Macmillan Publishers Ltd 2017

Authors and Affiliations

  1. 1.Department of Science, Technology & Innovation StudiesUniversity of Edinburgh, Old Surgeons’ Hall, High School YardsEdinburghUK
  2. 2.W21C Research and Innovation Centre, Cumming School of MedicineUniversity of CalgaryCalgaryCanada
  3. 3.Department of SociologyUniversity of CalgaryCalgaryCanada

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