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

https://twitter.com/user/status/1327384542735462401

 

Even by Michael White’s usually bad standards, this is just so incredibly terrible.

They’re pretending to want to know patients’ views of recovery, but are just cynically using patients’ words as an excuse to redefine recovery in the way that suits them.

So they ask participants about their views of recovery, then they impose a framework on participants’ responses and use that to interpret their words (regardless of whether or not that model is something that would resonate with the participants themselves). They never actually check back with their participants to verify whether their interpretations match what the participants think. Nonetheless, they will now claim that their interpretations represent patients’ views of recovery.

They’ve had to draw such a long bow to make their data fit the sick role narrative. It would be really interesting to repeat this analysis of these participants’ responses with an a-theoretical approach.

They’ve also (of course) failed to take into consideration the impact of doing a GET program (albeit a self-help one) on participants’ views of recovery, even though we know the GET model has some clear messaging around recovery and improvement. It would be interesting to see what themes around recovery arose from a group of patients who hadn’t done GET (or, at least weren’t recently in a GET study with the same researchers).

 

Translation (in my best Neil from The Young Ones voice):

What even is recovery, anyway? It’s all about how you feel, man. It’s like, recovery is whatever you want it to be. Don’t let The Man tell you you haven’t recovered. If you think you’ve recovered, man, you have. It’s like, really heavy.

 

Bad science is easier to deal with than bad faith.

 

I think it's human nature to find meaning in things that happen and if the meaning they find is helpful to the individual, or at least not harmful, fair enough.

It's when the subjective meaning helpful in their own situation is pushed on to others, especially others who through no fault of their own aren't doing so well & won't recover, it becomes harmful.

I have literally heard people being told that if they haven't recovered then they haven't found the root cause of their issues. I'm not talking about contested illness here either.

That's just cruel and unnecessary.

Yep. I've heard people who were in fairly supportive & happy relationships told they'd never get better until they left their spouse. Others who were told to uproot themselves and relocate far from all friends and family if they wanted to get better.

 

Unfortunately, it doesn't though. Because these researchers work mainly in the mental health field, "recovery" to them means something different.
Here are some examples:

1. Recovery may not always refer to the process of complete recovery from a mental health problem in the way that we might recover from a physical health problem... https://www.mentalhealth.org.uk/a-to-z/r/recovery

2. Recovery means gaining and retaining hope, understanding of ones abilities and disabilities, engagement in an active life, personal autonomy, social identity, meaning and purpose in life, and a positive sense of self. (from Australian National Standards for Mental Health - derived from a UK NHS document)

3. Recovery means different things to different people. Personal recovery is about working towards something that is important to you. And having hope for the future.
https://www.rethink.org/advice-and-...ental-illness/treatment-and-support/recovery/

4. [Recovery] ... requires a paradigm shift in thinking from pathology and illness to self determination, life stories, human strengths, hopes and dreams, peer support and control by the user [bleurgh!] with support from professionals as partners, mentors and advocates. https://imhcn.org/bibliography/recovery-an-introduction/recovery-general/

And yet, White et al's definition of "recovery" still comes nowhere close to these definitions above. :/

 

Orwell would disagree:

 

I think that psychodynamic therapists should be cautious about giving advice and should be aware of how their own and their client’s attachment styles influence their advice-giving behavior.

 

A reminder of White's version of "recovery":

Where "normal range in fatigue" is CFQ score <18 (anything above 11 means that the patient has had to score "worse than usual" on at least 1 item),
"normal range in physical function" is a PF-36 score >60 (changed from >85 because they found it would exclude pretty much everyone),
"not meeting Oxford case definition" means that fatigue is no longer the main symptom (easy to fudge),
"CGI scores of 1 or 2" means the patient working out how to get away from these people as fast as possible - ah yes, say I'm feeling much better thanks and making a swift (relatively speaking) exit.

 

I agree about therapists sometimes providing unhelpful ideas but there really isn't any such thing as an accountant handing back or losing their qualifications.

 

So we have recovery, preferred meaning of recovery, composite recovery....

Dear Peter White,

may I propose Quantum Recovery as the next possible step. It is where the patient must adjust the expectation that recovery does not mean improved function or quality of life so that they may take up employment or pursue other goals that others might consider normal while still be considered to be recovered so that they shouldn't be entitled to any benefits or insurance payouts.

Edited to make meaning clearer

 

Well, that’s how he explained it to me. Perhaps it at least partly referred to registration with a professional body?

 

Exactly.
They have spent the best part of 40yrs erroneously shaming PwME for supposedly wanting to 'adopt the sick role' for some kind of 'secondary gain'. I have seen that phrase or some version of it repeated scores of times in various articles, papers etc that the BPS proponents have written. Their early work is particularly rank with such sentiments, & in 2002 there was that disgusting presentation given by Lynne Turner Stokes....

You cannot simultaneously say that patients have an unconscious desire/motivation to adopt the sick role & that this drives the behaviour leading to perpetuation of their illness/maladaptive coping strategies, and that they also have unhelpful management approaches (which is the new more PC way of saying maladaptive) because they want to avoid the sick role.
You cant have it all ways.

The whole lot of them seem only to be capable of doing research that is created and designed to produce only one outcome, & support one single message that they can give to patients...., regardless of what patients think/feel, or how they behave.....
Dear Patient "You're doing it wrong".


In addition, not wanting to go back to a pre-illness way of life, that may have involved some unhealthy behaviours such as overwork, is NOT the same as not wanting to go back to feeling as physically strong/healthy as one did while one was doing them.
It just illustrates that they think it's all behavioural. If they genuinely believed there was anything organically wrong that was not caused/perpetuated by thoughts/behaviour they would never have even done this study.

 

Only loosely related but the NICE guidelines have lead to several conversations on Twitter between or involving psychiatrists. And as much as I try to be generous in this regard, I have yet to see even one such discussion be pertinent. Exclusively framed from their perspectives and wants, this is what they believe, this is what they do. Nothing of substance, no relevant discussion, clearly no pertinent understanding. No measurable difference between literally arguing about angels dancing on hairpins, those discussions are more theological in basis than anything to do with science.

It's not the best format for such discussion but then there's stuff like this paper, which uses more words yet doesn't have any more substance than any of those dismissive tweets by confused psychiatrists who don't understand that they are impertinent and stuck entirely in an echo chamber of misinformation and, quite frankly, delusion.

What an incredibly dysfunctional system. A genuine fact-free zone, dominated by feelings and opinions. Bad opinions, especially. I would say I hope the field recovers from that horrible phase, but somehow no one knows what the word even means. Navel-gazers never notice they are walking in circles. It sucks for the good psychiatrists out there, because the bad apples have truly rotten the whole bunch. That last part is so often left out, even though it's the most important. A whole rotten bunch in the end.

 

The UK population is currently 66,650,000. 0.76% of that is 506,540. There's no way that many people have genuine ME, chronic fatigue may be but not ME.

ETA: I've just checked the Johnston et al., 2013 reference and it seems they're using the broad overly inclusive CDC 1994 criteria.

 

I was actually told by a psychiatrist, to my face and in front of my husband, that my needing to use a wheelchair to get around, being unable to go out with my family, unable to get out of bed for much of the day, unable help care for my teenage kids, losing my hard won teaching career, my physical and financial independence and most of my friends was all a part of the “secondary gains” of being diagnosed with ME because I was “tired of being the one doing the looking after and now it was my turn to be looked after”. I kid you not. Strangely, when he asked if I’d like to see him again, I decided I’d rather not....

 

Psychology/psychiatry needs to stop using the word recovery and invent a word which is clearly understood by all to define what THEY choose to mean by recovery.

 

'Unprofitable' would seem to be the closest word

 

But I think the pilot was also very modest. Most references to the "miracle" related to his considerable skills and experience, and the element of luck - good or bad - that always plays its part, no matter what the science and technology. Just on flying skills alone it was highly impressive. One wing would have only needed to be a little bit lower, and instead of pancaking flat in, it would have cartwheeled, with a drastically poorer outcome. Especially as the engine nacelles act like huge water scoops, and therefore a massive braking effect on each side. All the science and technology in the world cannot protect against the various random, yet hugely influential, factors at play in such a scenario.

If the same scenario were to be replayed 10 times, with 10 randomly chosen qualified airline pilots, with 10 randomly chosen days and therefore weather conditions, etc, etc, I suspect not many would have been anything like as favourable.