Discussion in 'Latest ME/CFS Research' started by Dolphin, Jan 23, 2015.
This isn't as biased as some pieces which assume CBT and GET are wonderful and that patients forums, patients organisations, etc. should be recommending them.
However, I don't think it is balanced.
This is an example of how I think it is unbalanced:
Here's how it ends:
I'm not sure it has proven that the forum has lost some of its potential for becoming politically influential.
This seems to be an unusual ME/CFS forum (or alternatively they analysed it in an unusual way).
I saw one person on FB summarised it as follows:
This is a long paragraph which explains some of the views of the authors. It also includes some (IMHO) interesting findings from other research
Seems like a good example of how context guides interpretation. They seem sincere but without really spending a lot of time and effort coming to grips with what we deal with 24/7 year in year out and all the nuances of coping with the range of illness, they can't adequately assess the meaning or utility of what is being shared.
The authors don't seem to understand that research actually supports the position of patients that this is an organic illness. It is the psychosomatic explanation that is without any basis in objective reality.
That we can't explain how the universe came to be doesn't mean that belief in a creator is the only rational position.
For those who read it: What do you think about the moral/ethical aspect of the study? They didn't bother to contact their informants for approval. They included a 16 year old, without consent. OK?
Don't know. If it was a private forum I think it would be more serious: they said this was information anybody could see.
Very personal experiences from a child with a BMI on 13.7 wanted to be fed with a tube on a hospital. Is it okey? I know several people that reacted to it. One guy at a Norwegian forum found her name using less than 60 seconds on Google. Why not contact her, and the others? Most of them were from Facebook. They said it was probably hard contacting their informants. It is probably just as easy as calling someone...
(The article, not comments here about it.)
For a lot of things like this, it does seem a bit morally iffy to me.
For people who have been cut off from a lot of systems of social support, open forums are a really valuable way of being able to reach out to others who one might hope will understand ones situation. Turning that in to a place where researchers can pick up quotes without consent in order to do a cheap bit of research might leave some feeling more isolated and less able to reach out and discuss their own experiences.
Also, I'm a bit uncomfortable with this sort of 'studying' without the researchers engaging the posters in some sort of open debate and discussion about the interpretations that the researchers are placing on the posters quotes and actions. Without that it's just a one-way thing imposed upon patients. For researchers, they have conferences funded, chances to socialise with colleagues, private lists they'll be aware of... a lot of patients don't have these sorts of opportunities to discuss matters important to them in venues where they are not at risk of being studied without consent.
You can also try a Google Site Search
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