Journal of Medical Humanities

, Volume 38, Issue 2, pp 173–189 | Cite as

Generating a Social Movement Online Community through an Online Discourse: The Case of Myalgic Encephalomyelitis

Article

Abstract

Online communities, created and sustained by people sharing and discussing texts on the internet, play an increasingly important role in social health movements. In this essay, we explore a collective mobilization in miniature through an in-depth analysis of two satiric texts from an online community for people with myalgic encephalomyelitis (ME). By blending a sociological analysis with a rhetorical exploration of these texts, our aim is to grasp the discursive generation of a social movement online community set up by sufferers themselves to negotiate and contest the dominating biomedical perception of their condition.

Keywords

Online research Chronic illness Fatigue/exhaustion Interdisciplinary research Discourse analysis 

Notes

Acknowledgements

The authors disclosed receipt of the following financial support for the research, authorship, and publication of this article: The Norweigan Research Council, Research Program of Health and Care Sciences (grant no. 212978 and 204324).

References

  1. Album, Dag and Steinar Westin. 2008. “Do Diseases have a Prestige Hierarchy? A Survey among Physicians 718 and Medical Students.” Social Science & Medicine 66:182-188.CrossRefGoogle Scholar
  2. Anderson, Valerie R., Leonard A. Jason, Laura E. Hlavaty, Nicole Porter, and Jacqueline Cudia. 2012. “A 720 Review and Meta-synthesis of Qualitative Studies on Myalgic Encephalomyelitis/Chronic Fatigue 721 Syndrome.” Patient Education & Counseling 86:147-155.CrossRefGoogle Scholar
  3. Anonymous. 1956. “A New Clinical Entity?” Lancet 267:789–790.CrossRefGoogle Scholar
  4. Aronowitz, Robert A. 1998. Making Sense of Illness: Science, Society and Disease. Cambridge: Cambridge University Press.Google Scholar
  5. Bakhtin, Mikhail M. 1981. The Dialogic Imagination. Austin: University of Texas Press.Google Scholar
  6. Banks, Jonathan and Lindsey Prior. 2001. “Doing Things with Illness. The Micro Politics of the CFS Clinic.” Social Science & Medicine 52:11-23.CrossRefGoogle Scholar
  7. Barker, Kristin K. 2008. “Electronic Support Groups, Patient-consumers, and Medicalization: The Case of Contested Illness.” Journal of Health & Social Behavior 49:20-36.CrossRefGoogle Scholar
  8. Benford, Robert D. and David A. Snow. 2000. “Framing Processes and Social Movements: An Overview and Assessment.” Annual Review of Sociology 26:611-639.CrossRefGoogle Scholar
  9. Bourdieu, Pierre. 1977. Outline of a Theory of Practice. New York: Cambridge University Press.CrossRefGoogle Scholar
  10. Brenu, Ekua W., Lotti Tajouri, Kevin J. Ashton, Donald R. Staines and Sonya Marshall-Gradisnik. 2013. “Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and Parallels with Autoimmune Disorders.” In Genes and Autoimmunity, edited by Spaska Angelova Stanilova, 205–35. InTech. doi:  10.5772/53440.
  11. Brown, Phil and Stephen Zavestoski. 2004. “Social Movements in Health: An Introduction.” Sociology of Health & Illness 26:679-694.CrossRefGoogle Scholar
  12. Brurberg, Kjetil G., Marita S. Fønhus, Lillebeth Larun, Signe Flottorp, and Kirsti Malterud. 2014. “Case Definitions for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME): Asystematic Review.” BMJ Open 4. doi:10.1136/bmjopen-2013-003973.Google Scholar
  13. Butler, Judith. 1997. “Sovereign Performatives in the Contemporary Scene of Utterance.” Critical Inquiry 23:350-377.CrossRefGoogle Scholar
  14. Caren, Neal, Kay Jowers, and Sarah Gaby. 2012. “A Social Movement Online Community: Stormfront and the White Nationalist Movement.” Research in Social Movements, Conflicts and Change 33:163-193.CrossRefGoogle Scholar
  15. Carruthers, Bruce M., Marjorie I. van de Sande, Kenny L. De Meirleir, et al. 2011. “Myalgic Encephalomyelitis: International Consensus Criteria.” Journal of Internal Medicine 270: 327–338.CrossRefGoogle Scholar
  16. Clarke, Juanne N. and Susan James. 2003. “The Radicalized Self: The Impact on the Self of the Contested Nature of the Diagnosis of Chronic Fatigue Syndrome.” Social Science & Medicine 57:1387-1395.CrossRefGoogle Scholar
  17. Cohen, Anthony P. 1985. The Symbolic Construction of Community. London: Routledge.CrossRefGoogle Scholar
  18. Cohn, Simon. 1999. “Taking Time to Smell the Roses: Accounts of People with Chronic Fatigue Syndrome and Their Struggle for Legitimisation.” Anthropology & Medicine 6:195-215.CrossRefGoogle Scholar
  19. Crossley, Nick. 2004. “Not Being Mentally Ill. Social Movements, System Survivors and the Oppositional Habitus.” Antropology & Medicine 11:161-180.CrossRefGoogle Scholar
  20. de Wolfe, Patricia. 2009. “ME: The Rise and Fall of Media Sensation.” Medical Sociology Online 4:2-13.Google Scholar
  21. della Porta, Donatella and Mario Diani. 2006. Social Movements: An Introduction. Malden: Blackwell Publishing.Google Scholar
  22. Dumit, Joseph. 2006. “Illnesses You have to Fight to Get: Facts as Forces in Uncertain, Emergent Illnesses.” Social Science & Medicine 62:577-590.CrossRefGoogle Scholar
  23. Edbauer, Jenny. 2005. “Unframing Models of Public Distribution: From Rhetorical Situation to Rhetorical Ecologies.” Rhetoric Society Quarterly 35:5-24.CrossRefGoogle Scholar
  24. European ME Alliance. 2014. “About Us.” http://www.euro-me.org/about.htm.
  25. Eysenbach, Gunther and James E. Till. 2001. “Ethical Issues in Qualitative Research on Internet Communities.” British Medical Journal 323:1103-1105.CrossRefGoogle Scholar
  26. Fair, Brian. 2010. “Morgellons: Contested Illness, Diagnostic Compromise and Medicalisation.” Sociology of Health & Illness 32:597-612.CrossRefGoogle Scholar
  27. Fairclough, Norman. 2013. Critical Discourse Analysis: The Critical Study of Language. New York: Routledge.Google Scholar
  28. Foucault, Michael. 1980. Power/Knowledge. New York: Pantheon.Google Scholar
  29. Frank, Arthur. 2010. Letting Stories Breathe. Chicago: The University of Chicago Press.CrossRefGoogle Scholar
  30. Gavin, Jeff, Karen Rodham, and Helen Poyer. 2008. “The Presentation of “pro-anorexia” in Online Group Interactions.” Qualitative Health Research 18:325-333.CrossRefGoogle Scholar
  31. Grue, Jan. 2014. “A Garden of Forking Paths: A Discourse Perspective on ’Myalgic Encephalomyelitis’ and ’Chronic Fatigue Syndrome’.” Critical Discourse Studies 11: 35-48.CrossRefGoogle Scholar
  32. Holberg, Ludvig. 1722/2012. Comedies by Holberg; Jeppe of the Hill, The Political Thinker, Erasmus Montanus. General Books LLC: www.general-ebooks.com.Google Scholar
  33. Hossenbaccus, Zahra and Peter D. White. 2013. “Views on the Nature of Chronic Fatigue Syndrome: Content Analysis.” JRSM Short Reports 4:1-6.CrossRefGoogle Scholar
  34. Invest in ME. 2008. “Norway Establishes ME Centre.” Accessed March 15, 2016. http://www.investinme.org/IIME%20Newsletter%20Dec%2008.htm.
  35. Iser, Wolfgang. 1974. The Implied Reader: Patterns of Communication in Prose Fiction from Bunyan to Beckett. Baltimore: Johns Hopkins University Press.Google Scholar
  36. Jutel, Annemarie D. 2011. Putting a Name to it. Diagnosises in Contemporary Society. Baltimore: Johns Hopkins University Press.Google Scholar
  37. Keränen, Lisa. 2014. “Public Engagements with Health and Medicine.” Journal of Medical Humanities 35: 103-109.CrossRefGoogle Scholar
  38. Knudsen, Ann Kristin, Linn V. Lervik, Samuel B. Harvey, Camilla S. Løvvik, Anne N. Omenås, and Arnstein Mykletun. 2012. “Comparison of Chronic Fatigue Syndrome/Myalgic Encephalopathy with other Disorders: An Observational Study.” JRSM Short Reports 3: 1-7.CrossRefGoogle Scholar
  39. Kuipers, G. 2015. Good Humour, Bad Taste: A Sociology of the Joke. Berlin:Walter de Gruyter GmbH & Co KG.Google Scholar
  40. Lenski, Susan D. 1998. “Intertextual Intentions:Making Connections across Texts.” The Clearing House 72:74-80.CrossRefGoogle Scholar
  41. Lian, Olaug S. and Bondevik, Hilde. 2015. “Medical Constructions of long-term Exhaustion—Past and Present.” Sociology of Health & Illness 37:920-935.CrossRefGoogle Scholar
  42. Lian, Olaug S. and Nettleton, Sarah. 2015. “’United We Stand’: Framing Myalgic Encephalomyelitis in a Virtual Symbolic Community.” Qualitative Health Research 25: 1383-1394.CrossRefGoogle Scholar
  43. Lynch, Owen H. 2002. “Humorous Communication: Finding a Place for Humor in Communication Research.” Communication Theory 12:423-445.CrossRefGoogle Scholar
  44. McEvedy, Colin P. and A. W. Beard. 1970. “Royal Free Epidemic of 1955: A Reconsideration.” British Medical Journal 1 (5687): 7-11.CrossRefGoogle Scholar
  45. Miller, Carolyn R. 1984. “Genre as Social Action.” Quarterly Journal of Speech 70:151-167.CrossRefGoogle Scholar
  46. Ministry of Justice and Public Security 2013. “Lov om opphavsrett til åndsverk (åndsverkloven)” [The Copyright Act]. Accessed March 15, 2016. http://lovdata.no/dokument/NL/lov/1961-05-12-2.
  47. Nettleton, Sarah. 2006. “‘I just want permission to be ill’: Towards a Sociology of Medically Unexplained Symptoms.” Social Science & Medicine 62:1167-1178.CrossRefGoogle Scholar
  48. Norwegian Statistics. 2015. Bruk av IKT i husholdningene, 2015, 2. kvartal [Use of IKT in households, 2015, 2. quarter]. Accessed March 15, 2016. http://ssb.no/ikthus. https://www.ssb.no/teknologi-og-innovasjon/statistikker/ikthus/aar/2015-10-01.
  49. Radin, Patricia. 2006. “‘To me, it's my life’: Medical Communication, Trust, and Activism in Cyberspace.” Social Science & Medicine 62:591-601.CrossRefGoogle Scholar
  50. Sarangi, Srikant. 2010. “Practising Discourse Analysis in Healthcare Settings.” In The Sage Handbook of Qualitative Methods in Health Research, edited by Ivy Bourgeualt, Robert Dingwall, and Raymond de Vries, 397-416. London: Sage.CrossRefGoogle Scholar
  51. Scott, J. Blake. 2014. “Afterword: Elaborating Health and Medicine’s Publics.” Journal of Medical Humanities 35 (2): 229-235.CrossRefGoogle Scholar
  52. Shifman, L. 2007. “Humor in the Age of Digital Reproduction: Continuity and Change in Internet-based Comic Texts.” International Journal of Communication 23:187-209.Google Scholar
  53. Vayreda, Agnes and Charles Antaki. 2009. “Social Support and Unsolicited Advice in a Bipolar Disorder Online Forum.” Qualitative Health Research 19:931-942.CrossRefGoogle Scholar
  54. Ziebland, Sue and Sally Wyke. 2012. “Health and Illness in a Connected World: How might Sharing Experiences on the Internet affect People's Health?” The Milbank Quarterly 90:219-249.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media New York 2016

Authors and Affiliations

  1. 1.Department of Community Medicine, Faculty of Health SciencesUniversity of Tromsø – The Arctic University of NorwayTromsøNorway
  2. 2.Department of Special Needs EducationUniversity of OsloOsloNorway

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