The Biopolitics of CFS/ME

Dolphin · Aug 10, 2018

While there is a range of mainly non-pharmacological ‘treatments’ or ‘rehabilitation strategies’, only two have demonstrated reproducible evidence for their efficacy in non-severely affected CFS/ME patients: cognitive behaviour therapy (CBT) and graded exercise therapy (GET). Based on evidence from multiple randomised clinical trials (RCTs),18 a Cochrane systematic review (Chambers, Bagnall, Hempel, & Forbes, 2006; see also, Twisk, 2017, p. 3; Yancey & Thomas, 2012, p. 741–742) claimed that cognitive behaviour therapy and graded exercise therapy interventions showed promising results, appearing to reduce symptoms and improve function.19 According to the cognitive-behavioural model of illness, the patient's interpretation of symptoms plays an important role in perpetuating the illness (e.g. Sharpe, 1991; Wessely, 1989). Cognitive behaviour therapy aims to help the patient change the ‘negative beliefs’ that s/he has with the goal being either to reduce the symptoms and help the patient cope with the illness or to fully recover. On the other hand, graded exercise therapy is a physical activity that starts very slowly and gradually increases over time. Despite some limitations with the evidence and the generalisability of the findings, two reviews cautiously concluded that some patients may benefit from graded exercise therapy (Chambers et al., 2006; Edmonds, McGuire, & Price, 2004). Lastly, pacing is probably the most accepted form of treatment after cognitive behaviour therapy and graded exercise therapy. Pacing therapies encourages behavioural change, but unlike cognitive behaviour therapy, they acknowledge the typical patient fluctuations in symptom severity and delayed exercise recovery. Pacing's goal is to increase over time the level of ‘routine functioning’ of the individual. A randomised clinical trial concluded that pacing with graded exercise therapy had statistically better results than relaxation therapy (Deale, Husain, Chalder, & Wessely, 2001; Wallman, Morton, Goodman, Grove, & Guilfoye, 2004), and a 2008 patient survey by the Action for ME in fact found pacing to be the most helpful treatment.20
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It's a bit disappointing that CBT and GET sound like they have a good evidence base.

Dolphin · Aug 10, 2018

The aforementioned criticisms and interventions by CFS/ME activists illustrate the growing activism of biosocial communities or to use different terminology, ‘embodied health movements’ (Brown et al., 2004) and that medical knowledge and expertise is nowadays less unequally distributed between practitioners and patients.
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Dolphin · Aug 10, 2018

Antony Pinching, Professor of Immunology and principal medical advisor for Action for ME (AfME), a UK CFS/ME advocacy group, believes that some of the reasons CFS/ME has not attracted much attention – despite the fact that epidemiology has increasingly showed CFS/ ME to have a relatively high prevalence in the US7 – include the lack of aetiology, the marginalisation of patients, its small market size, but also patients' ‘unproductive’ activism (Pinching, 2003).
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Pinching was a frustrating character. Despite seeing the condition as mainly physical, I don't recall him criticising either individuals like Simon Wessely or Peter White or criticising their views and rhetoric. I got the impression he wanted patients to be fairly silent. That might be one approach if he was willing to give criticisms himself, but he was not. He has been retired a long time now and still hasn't spoken up.

Sean · Aug 11, 2018

but also patients' ‘unproductive’ activism (Pinching, 2003).
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Yeah, coz leaving it up to the pros like Prof Pinching has delivered so much progress for us.

ME/CFS Skeptic · Aug 11, 2018

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)’.

Dolphin said: ↑

I don't believe that's right unless perhaps in the US.
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This is a rookie mistake. CFS is classified in the ICD-10 as the index of Code G93.3 http://apps.who.int/classifications/icd10/browse/2010/en#/G93.3

Medfeb · Aug 11, 2018

Dolphin said: ↑

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?
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Its all muddled. He's mixing up WHO's ICD-10 with the US specific ICD-10-CM in which CFS was put into the symptoms chapter. And the ICD-11 comment is wrong.

Dolphin · Sep 1, 2020

This is mentioned here:
Podcast: "Chronic Fatigue Syndrome: Illness in context"
https://www.s4me.info/threads/podcast-chronic-fatigue-syndrome-illness-in-context.16620/

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The Biopolitics of CFS/ME

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