Identities and the Internet

[Dolphin]

This is free, at least to me

Academic book section, "Identities & the Internet", on ME/CFS, FMS & IBS groups in US & Germany (p176-180)

https://books.google.ie/books?hl=en&lr=lang_en&id=mdkmDAAAQBAJ&oi=fnd&pg=PA176&dq="chronic fatigue syndrome"&ots=qjOYOgOPLt&sig=sf-w3LpGWv_w--jGijGwn2kqna0&redir_esc=y#v=onepage&q="chronic fatigue syndrome"&f=false

I didn't find it particularly exciting but perhaps somebody else might find a use for it.

 

[Snow Leopard]

It's not terrible, but it's rather hypothetical/superficial - observations from the outside with no attempt to gather information systematically.

I very much disagree with the observation that the "virtual community of sufferers represents a more severely affected segment of the disease-population", on the contrary - the most severe are bedbound, often do not have the capacity to participate at all. If we hear about the severely affected, it is through their family/friends. If the author engaged with the community at all, in any sort of real depth, they would know this.

PS, Gesine Kuspert Hearn if you ever read this, feel free to ask questions.

 

[green_monster]

i would love to contrbut to discussion more but i cant becausw my brain doesnt work properly

when it works better i have to prioritize and unforyunately participating in forum discussions has to be low priority

things like food and shower comes first

 

[dreampop]

It is terrible....its amongst the most self-indulgent crap I've ever read. An sociologist musing, totally unscientifically, actually remarkably unscientifically, about her observations. Casually lumping things together: patients, diseases, national behaviors. No evidence, but its cool because its a "functional" so people can just abandon logic. This is why not all doctorates are equal.

I can see someone writing something like this about Parkinson's in the 19th century. "I have observed the shaky sick, for which their is no biologic origin to the shake, in England and in France and their attempts to understand their shaking in the greater context of society and religion. The English shaky tackle their shakes head on..."

PS Hearn if you ever read this, how did you get such garbage published?

 

[lauluce]

It's not terrible, but it's rather hypothetical/superficial - observations from the outside with no attempt to gather information systematically.

I very much disagree with the observation that the "virtual community of sufferers represents a more severely affected segment of the disease-population", on the contrary - the most severe are bedbound, often do not have the capacity to participate at all. If we hear about the severely affected, it is through their family/friends. If the author engaged with the community at all, in any sort of real depth, they would know this.

PS, Gesine Kuspert Hearn if you ever read this, feel free to ask questions.

I agree, I am at the boundarçy between severe and moderate, so I mostly read but seldom partcipate