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The Social Media Experiences of Long-term Patients: Illness, Identity, and Participation


Senior Member
Silicon Valley, CA
....kind of cool, this one.

Post doctor Brita Ytre-Arne1
1Post doctor, Department of Information Science and Media Studies, University of Bergen

The present article investigates the meanings of social media use for long-term patients, focusing on a group of Norwegian bloggers diagnosed with myalgic encephalomyelitis (ME). This severe illness can confine patients to their homes for long periods of time, drastically reducing possibilities to participate on most social arenas and leaving Internet use as a rare opportunity for connection with the outside world. A qualitative analysis of interviews with ME bloggers investigates the meanings of social media use in this particular situation. Drawing on perspectives from research on patients’ Internet use, this phenomenon is analysed as management of identity narratives in the face of illness. However, the article further argues that the concept of participation provides a relevant supplementary perspective that highlights the societal and political relevance of these practices.

Keywords: social media; participation; identity; narrative; illness; welfare state

Full text

sarah darwins

Senior Member
Cornwall, UK
That is kind of cool! Full of the kind of thing that would make Sarah Palin's head explode ...

Through social media use, long-term patients can participate in the welfare state through patient communities or patient activism, but also as citizens making contributions to public debates on different dimensions of the welfare state.

I would recommend reading the section about Rituximab trial participant and blogger Maria Gjerpe in the section titled Participation as Patient Activism: From Debate to Action. It's compelling and encouraging.

Nice one, Brita.


Senior Member
England (south coast)
It's not obvious from the title that this study specially discusses ME/CFS patients and our community in Norway.

Just placing further details here for future reference...

Ytre-Arne B.
The Social Media Experiences of Long-term Patients: Illness, Identity, and Participation.
Nordicom Review. 2016;37:15-28.



Senior Member
I thought this paper was interesting enough.

Most of the stuff I have underlined is from "Analysis of ME Patients’ Social Media Use" (page 4) onwards so don't give up on it if you're not too excited by the first few pages.

There is no scientific terms or statistics which can make some papers difficult to read for some people.
I didn't find there was too much jargon: some sociological papers can be difficult to read. It may help that English probably isn't this author's first language.