Searching for papers about online ME/CFS patient communities

[Kalliope]

Does anyone know of papers exploring online ME patient communities? Don't know quite where to start..

 

[Sly Saint]

https://www.s4me.info/threads/using...c-encephalomyelitis-cfs-me-2021-murray.23724/

https://www.s4me.info/threads/impac...h-me-cfs-a-survey-2021-morehouse-et-al.21422/

https://www.s4me.info/threads/makin...-patients-with-mus-2021-marcinow-et-al.21316/

 

[Kalliope]

This is perfect, @Sly Saint
Thank you!

 

[Lou B Lou]

Thank You @Sly Saint - just what I was looking for too.

 

[Hutan]

Also this one:
Comparison of chronic fatigue syndrome/myalgic encephalopathy with other disorders: an observational study by Knudsen et al. 2012
Objectives
To examine the level of activity in online discussion forums for chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) compared to other disorders. We hypothesized the level of activity to be higher in CFS/ME online discussion forums.

 

[Hutan]

2008: Electronic Support Groups, Patient-Consumers, and Medicalization: The Case of Contested Illness
This one uses fibromyalgia as an example, but is old and @Woolie suggests that it has been influential.

 

[Kalliope]

Thank you so much, @Hutan
The more papers, the better

 

[Andy]

Not that I have any suggestions to give at this moment, but do you specifically need papers about ME/CFS communities or would papers about other communities be helpful as well?

 

[Hutan]

A podcast, I haven't listened, but it might mention some research.
Podcast: Finding My People - Online Communities with Jenny McGibbon and Stefanie Grant

 

[Kalliope]

Not that I have any suggestions to give at this moment, but do you specifically need papers about ME/CFS communities or would papers about other communities be helpful as well?

I was thinking primarily of ME/CFS communities, but other papers on patient online communities could be helpful too