Sick of the Sick Role: Narratives of What “Recovery” Means to People With CFS/ME, 2020, White et al

Open access, https://journals.sagepub.com/doi/10.1177/1049732320969395

 

What a waste of time, effort, and funding that was.

 

The article continues the usual confusion of the people in the pro-CBT bubble between PEM and the hypothetical "boom-bust" activity patterns.

Sure, but that has nothing to do with recovery!

 

The meaning of recovery differed between participants—expectations for improvement and deployment of the sick role (and associated stigma) were key influences. While some saw recovery as complete freedom from symptoms, many defined it as freedom from the “sick role",

I would be astonished if any of the participants had any idea of the concept of "the sick role" before being primed. Presumably the quotation marks are to indicate something other than quotation.

 

Exactly right. Here is one of the patient quotes where the authors interpret as a desire to 'leave the sick-role'

 

Recovery is not always about eliminating all symptoms. Rather, it is a nexus between the reality of limited opportunities for full recovery, yet a strong desire to leave the illness behind and regain a sense of “normality.”

So "recovery" is not "full recovery". Now there's a bit of self-serving word play. We were wrong, know we were wrong, don't intend to admit we were wrong, so will instead redefine the meaning of right, and try to convince you enough so you buy into our bullshit.

I do feel this more recent spate of papers from the BPS folk is more about shapeshifting get-out-of-jail carding, than actually trying to improve the lives of patients - I think it is their own lives they are trying to improve. Their boats are burnt, and they and are now trying to convince the natives they really were on their side all the time, and on the side of righteousness.

 

Yep. Clearly, they need a course of CBT to help reframe their unhelpful beliefs.

 

https://twitter.com/user/status/1327229229445025798

 

Not read the paper itself, so had not seen this. You really could not make it up could you ...

Their very act of writing this is an exercise in moving goalposts, trying to redefine their own threshold for credibility as scientists. Well I'm afraid they have got their goalpost move completely wrong, because they have scored a huge own goal.

 

I thought White had retired.
Edit: Wasn't that given as a reason for refusing to release further PACE data?

 

Because he’s moved his retirement goalposts.

 

All that quote says is that she wants to leave behind is the label of ME & the crap that goes with it. If they had asked the patient 'if you had MS would you feel the same?' Id be willing to bet she would say no.

 

There is also a conflation of PEM with fatigue: "A characteristic feature [singular] is postexertional malaise or fatigue." Do they not know that these terms are not interchangeable?

And then: "The key CFS/ME symptom, postexertional malaise, may be partially responsible for this [boom-bust] cycle as it leaves individuals unsure as to how far they can push themselves (as symptoms may be delayed). However, this research suggests that a desire to leave the sick role behind may cause those with the condition to adopt unhelpful management approaches."

Aargh!

 

FWIW:
https://twitter.com/user/status/1326814292818223105

 

Do they mention the BPS definition of "recovery"?

That is, "sicker than when they entered the trial".

 

They excluded patients who "had physical contraindications to exercise", so in a paper on ME, they excluded ME-patients. Brilliant!

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"Others came to consider their life before CFS/ME an undesirable state, which had contributed to their becoming ill in the first place, a place they did not want or need to return to"

Strange, so these participants without ME, does not want to be healthy?

"These participants’ accounts appear to be consistent with Parsonian theory in terms of being able to largely leave the sick role behind through resumption of societal roles rather than the freedom from symptoms."

Bizarre conclusion , when they said they still have symptoms!

"Devendorf et al. (2019) found that physicians conceptualized recovery as a complete remission of symptoms and a return to premorbid functioning."

And thank god they do, instead of a "nexus between the reality of limited opportunities", the latter is called coping.

"Indeed, science philosopher Canguilhem believed that a return to the pre-illness state was not possible because the experience of being ill inevitably alters the person, even their memory of being unwell will have some sort of impact"

Well thats helpful psychology for ya

"Such expectations are in line with the literature which suggests that the longer individuals have been ill when they receive treatment, the less successful it is likely to be"

Yea maybe because there is no treatment that works? Ever thought about that?

"Parsons considered being sick an undesirable social role. Although the role excuses the sick from some societal responsibilities (e.g., work), there is the expectation that those occupying the role should seek to leave it as soon as possible"

Yes shame on the faking ill

"all approaches (graded exercise therapy, cognitive behavioral therapy, pacing) agree that the boom and bust cycle is undesirable"

Not in practice

"Any outcomes related to participant-defined recovery would need to be interpreted with the complexity that self-definition raises, where patient interpretations of recovery are grounded in their own personal circumstances and belief"

That would be an disaster for research