The Biopolitics of CFS/ME

[Daisymay]

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.

 

[Sean]

...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.

 

[Esther12]

I've not seen the full text, but Wessely doesn't like it, so that's a good sign:

 

[Sly Saint]

I've not seen the full text, but Wessely doesn't like it, so that's a good sign:

https://lra.le.ac.uk/bitstream/2381/27969/1/2013KarfakisNPhD.pdf

 

[Skycloud]

I may read this

Thanks for the link to the full paper @Sly Saint.

 

[Skycloud]

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.

 

[BruceInOz]

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

 

[BruceInOz]

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"

 

[Snow Leopard]

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.

 

[Woolie]

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.

 

[Skycloud]

The link given by @Sly Saint is to a PhD thesis, not the paper mentioned in the OP.

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

 

[Tom Kindlon]

 

[Dolphin]

The ‘nature’ of CFS/ME is passionately debated by psychiatrists and other medical scientists, researchers, patients' organisations, and social scientists. CFS/ME is discursively framed as an economic problem, an educational problem (van Hoof, De Becker, & De Meirleir, 2006, p. 46), possibly an infectious disease that needs to be securitised,6 and, finally, a moral problem as the persisting inactivity of these bodies is troubling. In the western, Anglo-American world, idleness and inactivity are considered a moral failure (Hay, 2010; see also; Rabinbach, 1992).

 

[Dolphin]

Regarding ethnicity and socio-economic status, community-based studies in the US, for example, there appears to be a higher prevalence of CFS/ME in people of lower socio-economic groups, and in African- Americans and Latino populations (see Luthra & Wessely, 2004). However, Luthra and Wessely (2004) note that these populations are not frequently referred for diagnosis and that these studies perpetuate the myth inherited from neurasthenia which takes CFS/ME to be an illness of the ‘developed’ countries.

I wonder has he got this right: I don't follow the logic.

 

[Dolphin]

In its International Classification of Disease (ICD-10, 1996)10, the World Health Organisation (WHO) categorises ‘CFS’ under the heading of ‘Symptoms, Signs and Abnormal Clinical and Laboratory Findings, Not Elsewhere Classified (R00-R99)’.

I don't believe that's right unless perhaps in the US.

The World Health Organisation categorises ‘fatigue syndrome’ under the general category of ‘Mental and Behavioural Disorders (F00-F99)’ and under the specific category of ‘Neurasthenia (F48)’. On the hand, it puts ‘Benign Myalgic Encephalomyelitis’ under the general category of ‘Disorders of the Nervous System (G00-99)’. Now the World Health Organisation is to revisit its system for the revised ICD-11 in 2018. The ICD-11 will reclassify ‘CFS’ as ‘R53.82 Chronic Fatigue, unspecified’, something that has worried CFS/ME patients and activists.11

I'm not sure who said that the ICD-11 would classify CFS like this?

 

[Dolphin]

 

[Dolphin]

The ‘Wessely School’, according to UK CFS/ME patients and activists (Hooper & Williams, 2008), marginalises them by a number of tactics and practices such as: they attempt to subvert the international classification of this disorder from neurological to behavioural; they propagate ‘untruths’ about the disorder; they build affiliations with corporate industry; they denigrate those diagnosed with CFS/ME (which could be described as ‘epistemic injustice’ (Blease, Carel, & Geraght, 2017; Fricker, 2007)); they suppress published findings; and they refuse to see or acknowledge the multiplicity of symptoms.

 

[Dolphin]

The CFS/ME community is in search of biomarkers13 that would legitimise and destigmatise its illness but also improve its treatment. The CFS/ME community's search for a diagnostic biomarker – the ‘holy grail’ of CFS as a patient recently put it14 – is a struggle against the ‘psychiatrisation’ of CFS/ME

 

[Dolphin]

For his part, DeLuca (2005) believes that CFS/ ME patients exaggerate and are aggressive at psychiatry. DeLuca believes modern psychiatric research has made great progress and that is why he does not appreciate the notions of ‘medically unexplained syndromes’ and ‘somatisation’ problematic and is against what might be called the ‘psychologisation’ of fatigue, which are all connected with depression and anxiety that he takes to be an effect of the spread of psychology in the popular culture.

I never knew that DeLuca said this.

 

[Dolphin]

People diagnosed with CFS/ME try to understand what is happening in/to their bodies. Of course this is not pure intellectual curiosity but stems from their quest for objectivity, legitimacy, and ‘energy’. They want a ‘cure’17 or at least the knowledge to reduce their symptoms and make their selves more ‘controllable’.