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

Daisymay said:
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.
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Yes, psychiatry forever seems to get its carts and horses the wrong way round. Invariably being guided by what they "prefer" rather than by the science, which seems to so elude them.
 
Daisymay said:
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.
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:thumbup:

Perhaps some researcher might like to do something constructive and carry out some research on how those conditions where doctors choose to redefine "recovery" are among the most stigmatized and where the outcomes are generally poorer than in the rest of medicine.

Just because this redefinition is considered acceptable in the mental health profession doesn't make it right. Maybe that's one of the reasons they've fought so hard over ME - that the misjudgements made in this field could shine a light on similar problems throughout the field of mental health.

Maybe that's why they want to spread their reach out into the general population with MUS and IAPT because once you come under their remit they do their best to ensure you are no longer a credible witness to your own experience. If you're not a credible witness it's much easier to gaslight, smear and throw straw man arguments around the place. Anything other than address the fundamental issues.

And they say we practice avoidance behaviour. :rolleyes:
 
In the publicity for the Pace trial they were quite happy for the papers to use recovery as it is understood in everyday life - back to complete normality - even while they knew that their figures showed that everyone was still very sick by the definitions used in medicine for other diseases.

Then they exploited this confusion to claim innocence when they were faced with the facts. That was the first they said that other people's definition may not match theirs.

If they were genuine, they should have put the statement about what they meant by recovery in the press release for the trial to protect patients and make sure only accurate facts were reported.
 
Mithriel said:
If they were genuine, they should have put the statement about what they meant by recovery in the press release for the trial to protect patients and make sure only accurate facts were reported.
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I'd go further and say they if they were genuine they wouldn't have used the word "recovery" in the first place.

There's no need to go torturing the meaning of the word until it squeaks. There are plenty of perfectly good words that are far more accurate they could have used such as improvement, remission etc.

If I recall correctly there was a clear language campaign to stop consumers being ripped of by slippery language used by utility companies and the like. It's time the mental health profession brought their standards up to match a basic requirement imposed on someone trying to sell something.
 
Sometimes, it really is that simple. It frankly takes dedication to be as wrong as people like White. So many people had been mildly ill for years before things got significantly worse. That makes some people look back and see something to avoid, but without time blurring everything, it really is that simple.

Making stuff up is not morally acceptable in medicine.

 
Blueskytoo said:
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....
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What a *$!!*@$!

I'm pretty sure we could - lol maybe should - put together a list of idiotic, patronising and downright insulting/abusive things that Drs have said to us. Didn't we start a thread like that at some point i cant remember. Perhaps its the 'irritating things' thread.
 
Barry said:
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.
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Yes, yes, totally this!

We see what you did there, White et al.
 
JemPD said:
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.
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I absolutely hate the idea that's wrapped up in this statement - that we sort of brought this on ourselves. We're supposed to regret the lifestyle choices we made when we were well because they "caused" us to get sick. We worked too hard, played too hard, drank too much, or weren't sufficiently happy or fulfilled. This self-blaming idea is yet another of the harms that psychological therapy can do to us.

Many people here remember feeling exhausted around the time they first got sick, but I'm willing to bet most of us were doing no more than the healthy people around us. It just felt more exhausting, mainly because we were starting to get sick and still trying to carry on normally.

My partner always says: before you go concluding that doing X causes Y, always think of the opposite cell. Think about how many drug addicts, party animals, smokers, dopers, overworkers, junk food eaters, anorexics, insomniacs, overexerting super athletes and general self-abusers never get ME. Hang on, none of the people I know that fit any of those categories ever got ME!

Screw the blame: don't let anyone talk you into to believing that you somehow brought this on yourself.
 
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It highlights how unscientific it all is because they can fit everyone into it and nothing we say can disprove it.

I was a marathon runner before I suddenly got ill - well you over trained.
I loved my job and had just been promoted - you were subconsciously looking for a way out of your new commitments.
I wasn't overdoing things - you were not taking enough exercise and let yourself get deconditioned.

Then, of course, if there actually was something going wrong in your life when you became ill, you don't stand a chance!
 
Woolie said:
I absolutely hate the idea that's wrapped up in this statement - that we sort of brought this on ourselves. We're supposed to regret the lifestyle choices we made when we were well because they "caused" us to get sick. We worked too hard, played too hard, drank too much, or weren't sufficiently happy or fulfilled. This self-blaming idea is yet another of the harms that psychological therapy can do to us.
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Woolie said:
Screw the blame: don't let anyone talk you into to believing that you somehow brought this on yourself.
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Hi Woolie not sure whether the statement you hate is my statement or whats implied in the study. So just to clarify i am not suggesting that any kind of unhealthy behaviours are to blame, for my, or anyone else's ME. I was just making the point that I for one would not choose to live the way i lived when i was healthy, should i be healthy again. I did overwork and I wouldnt do that again. There is no way of knowing what if any, impact that behaviour had on my health.

You seem to have read me as saying that i think unhealthy behaviours cause/contribute to ME? thats not at all what i'm saying.

I was just meaning that they (study authors) are trying to say that people not wanting to go back to thier old way of life means they have a different take on what recovery means - the BPSers are trying to spin not wanting to resume some behaviours that in the meantime might have been identified as unhealthy as meaning that they do not want to fully recover - in the traditional sense of the word.
Eg me working so long and hard that i rarely slept more than 4-5hrs a night - as i understand it that is not healthy for the human body in the long term, it certainly wasnt pleasant but i was enjoying it so i carried on. But i dont blame sleep deprivation, or myself, for getting ME - it may or may not have contributed, but either way it isnt a healthy behaviour for the body & if i had the chance to do that again i wouldnt). Since we dont know what causes ME we cannot know what behaviour/diet/lifestyle etc may make us vulnerable or not.

I was simply stating that my not wanting to resume that kind of schedule/way of life, should i be able to, is entirely different from my wanting to recover sufficiently that i could - if i so chose. The study authors try to equate the 2 things, i was pointing out the difference.
 
Oh, no, so sorry, @JemPD, I was in no way trying to criticise your post, and your point is a very good one. We want the health we had before, so we can choose what to do with it, just like a healthy person can - and isn't that what recovery is all about?

I was meaning to criticise the original White implication that we somehow wouldn't want to return to our old lives, because that's the life that caused us to be ill in the first place. So there's the implicit assumption that doing the "wrong" thing made us sick in the first place (and of course we know they believe that).

Apologies for not being clear.
 
If I became magically healthy tomorrow I don't think I would go back to my old life now either, even though I really loved it at the time.

Not because it wasn't healthy - I was no more unhealthy in lifestyle than most - but because I'm over two decades over and my priorities & perspectives have changed.

It would really annoy me though to have my words twisted into the meaning White would give them though.
 
Little is known about what recovery means to those with chronic fatigue syndrome/myalgic encephalomyelitis, a poorly understood, disabling chronic health condition.
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The first sentence is Peter White's summary of his lifetime's contribution to scientific knowledge. Excuse me for not reading any further. How many decades has he been at it? And still little is known (by him) and it is poorly understood (by him). Perhaps it's time to pass the baton and find something else to do? Get an allotment and tend vegetables? In how many other jobs do you get to look back on your life's work and say "I still haven't really got a clue about any of this, but if you keep paying me I'm willing to carry on doing exactly what I've been doing for the last few decades, with the same results"? I can only assume his paymasters must have some reason of their own to keep funding his amateurish incompetence.
 
The trouble with a word like "mean" is that it can have so many meanings.

I was recently trying to discover why exactly Arthur Kleinman might have been considered an appropriate candidate to chair the Ciba conference of long ago, alongside Shorter. What a pair Kleinman and Shorter.

I discovered this from his oeuvre Illness Narratives: Suffering, Healing, And The Human Condition: Amazon.co.uk: Kleinman, Arthur: Books which explains a great deal. I will not be offended if you ignore it. It seems that the work presently under discussion is from the same school.
 
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