"United We Stand": Framing Myalgic Encephalomyelitis in a Virtual Symbolic Community

Qual Health Res. 2015 Oct;25(10):1383-94. doi: 10.1177/1049732314562893. Epub 2014 Dec 8.


In this article, we report on a study that seeks to explore how the contested chronic condition myalgic encephalomyelitis (ME), one of the current medical diagnoses for medically unexplained long-term exhaustion, is negotiated within the context of Norwegian internet sites. From an analysis of discussions on 14 internet forums sustained by and for people living with ME, we seek to understand how their online activity sustains a virtual symbolic community (VSC). After exploring the content on these sites, we identified four discursive domains, or fields of conversation, that are demarcated by a discursive frame, or norms, values, and goals that define and reinforce the boundaries of the community. Interpreting discursive domains and their discursive frame provides insight not only to the culture of the ME VSC but also to its role in an international social health movement, including its potential for becoming politically influential.

Keywords: chronic illness; discourse analysis; fatigue / exhaustion; health care users’ experiences; internet communication; knowledge construction; lay concepts and practices; power / empowerment; social construction of illness and disease.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Chronic Disease
  • Communication*
  • Fatigue Syndrome, Chronic / psychology*
  • Health Education
  • Humans
  • Internet*
  • Motivation
  • Norway
  • Politics
  • Power, Psychological
  • Qualitative Research
  • Social Networking*