https://www.sciencedirect.com/science/article/pii/S1369848617300705 The Biopolitics of CFS/ME Author Nikos Karfakis Highlights •The diagnosis of CFS/ME is not only a scientific issue nor only contested within the confines of the clinic, but a much broader, biopolitical problem. •Attempts at making CFS/ME a stable epistemic object, have so far been only partially successful. •CFS/ME advocacy groups have been increasingly active internationally, making various demands on the scientific establishment and the governments. Abstract The diagnosis of CFS/ME is not only a scientific issue nor only contested within the confines of the clinic, but a much broader, biopolitical problem. This paper argues that Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) constitutes a biopolitical problem, a scientific object which needs to be studied, classified and regulated. Assemblages of authorities, knowledges and techniques make CFS/ME subjects and shape their everyday conduct in an attempt to increase their supposed autonomy, wellbeing and health. CFS and CFS/ME identities are however made not only through government, scientific, and medical interventions but also by the patients themselves, a biosocial community who collaborates with scientists, educates itself about the intricacies of biomedicine, and contests psychiatric truth claims. CFS/ME is an illness trapped between medicine and psychology, an illness that is open to debate and therefore difficult to manage and standardise. The paper delineates different interventions by medicine, science, the state and the patients themselves and concludes that CFS/ME remains elusive, only partially standardised, in an on-going battle between all the different actors that want to define it for their own situated interests.
The interests of patients outweigh those of all other 'actors' combined. Yet our interests have been by far the least recognised, respected, and served. That must change.
I've not seen the full text, but Wessely doesn't like it, so that's a good sign: https://twitter.com/user/status/1006860567246704640
Dated 8th June 2018 in Science Direct, but I think it's fairly old with references seeming to be no later than 2011 that I can see. (edit to add Doh! it's dated 2013.) It wasn't always clear to me what the author was trying to achieve and I'm left with the impression that muddy waters were made a little muddier. Possibly my fault.
I thought it was a useless piece of poorly written waffle that said nothing. Sorry I wasted my time reading it! The 2013 date (which I missed) I guess may explain the excessive focus on XMRV. ETA: The correct date is 2018, not 2013
The link given by @Sly Saint is to a PhD thesis, not the paper mentioned in the OP. The paper (which I got from scihub) says "Received 22 April 2017; Received in revised form 1 October 2017; Accepted 29 May 2018"
It doesn't add anything new and there are some proofreading issues/errors too, some words have opposite meaning e.g. harmless instead of harmful.
Better, easier to read, published version here. It is very surprising the paper got published, as it appears to be a rather superficial game of "he says, she says" - bits of other papers and other people's arguments, which are described and not actually evaluated in any serious manner. It is also very out of date, including hardly any references from the last ten years (my guess is the student started the thesis a decade ago, and didn't bother with a full update). The stuff on the brain is bizarre - its not as if that's the only current line of inquiry - and the decision to include a figure from am imaging study was just weird, as its clear the author has no clue what those areas of activation might actually mean. I'm have to say, I find myself (rather shockingly) in agreement with Wessely on this one. Edit: sorry, just noticed others had pointed out how out-of-date it is too.
OK. The PHD thesis is whhere I got 2013 from - that's making sense to me now. Don't think I can be bothered to read the published version
I don't believe that's right unless perhaps in the US. I'm not sure who said that the ICD-11 would classify CFS like this?
