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

This sounds very familiar to me from when I was first ill and happened to have a fair bit of contact with people recovering from cancer.

Many of them seemed to believe
- They got cancer for a reason & it was a warning that they were unhappy or unfulfilled.
- The cancer was a physical manifestation of unresolved emotional or psychological issues. Such as having a stressful job or having had relationship problems.
- To move forward they had to address the underlying issue by changing career, leaving the relationship or whatever. This was seen as fundamental to recovery and staying well in the future.

They neglected to take into account the many millions spent on cancer research, the very well educated health professionals that treated them and the very expensive & organised support services available.

Flat refusal to consider that, for some, blaming work or a spouse, was a convenient abdication of their own responsibilities in their work & home life.

I would add that in cancer recovery tends to mean being cancer & symptom free. Remission being a possible temporary improvement. No need for any nexus at all.

 

They are also trying another conflation trick here I think - just my opinion.

There is the suggestion here that if you have a medical condition that you can never fully recover from, then you may have to reassess your goals to ones that are realistically achievable, in the light of illness reality as it's evolving nature becomes apparent over time. This is a potentially very sensible approach.

But I suspect they also are seeking for people to auto-associate that with the expression "moving the goalposts", and so give that expression a new level of credibility in people's minds, that it would not normally otherwise have. Why would they do that?

I think they seek to plant the notion in people's minds that moving the goalposts in the PACE trial (which they did by redefining thresholds for recovery), was just sensible and somehow credible therefore, no matter what appallingly corrupt science it was. And of course that has been much condemned as an aberrant-science exercise in moving the goalposts. My suspicious mind suspects they wish to deliberately conflate the two things, so that those with insufficient understanding will fall for the sleight-of-word chicanery and wonder what all the fuss is about with PACE. I'll say one thing for them - they are very creative.

 

I do know what you mean – and I agree with the sentiment – but I might go with a different example. Cancer recovery can mean living with severe, lifelong, and sometimes progressive post-treatment symptoms, e.g. crumbling bones. Or, if you really draw the short straw, recovering from one type of cancer only to die a few years later of the refractory skin cancers that radiotherapy can cause.

Honestly, going by the experience of several friends and relatives, I consider myself lucky 'only' to have to live with moderate ME!

 

Even by the usual low standards of Peter White, this is absurdly incompetent. You can't redefine common words to fit your purpose.

Recovery has a clear common meaning. It has a very inapt meaning in medicine, as long haulers can testify. This is the main issue, how it's commonly used is strictly in the sense of ICU care, meaning "will probably not die". Those two meanings are radically different and have no counterpart in chronic illness. Acute care is not the same as chronic care. Time is not an arbitrary feature, it is an entire dimension that acts as a multiplier on problems.

Recovery does mean return to full health. Full stop. Anyone who is confused by this has no business being in this profession.

 

Apart from how obviously ludicrous that is, it also makes a significant statement - whether the authors realise it or not - about their strong implicit bias. You clearly could not run this trial on that basis unless already convinced people with ME/CFS had no physical problems with exercising, thereby confirming the authors' firmly held beliefs that problems with improving physical exercise are down to mental problems. How many feet do these people have they can keep shooting themselves into?

 

they can; MS, PACE 'We prefer the definitions of recovery we used'

eta: also standard in all psych related stuff
'Recovery is a journey, not a destination'

 

Unfortunately it is a common trick of those who wish to redefine how people think.

 

You can define words however you like provided that you include a definition section or schedule setting out your definitions of words used in some unusual or unfamiliar manner.

 

Sounds like the makings of a new word game .

 

So given the general debunking of CBT for many uses it looks like a reinvention heading towards ACT to maintain market share

 

I haven't read the full paper yet.
It would have been interesting to have some data on the questionnaire scores for those who took part.

Based on some data we have, I suspect, based on the information I have appended the SF-36 physical functioning scores of the improved group were probably mainly in the 50-80 range.
This is a long way from normal functioning for adults of working age.

 

I saw this previously in a magazine for a local group in England in the early- to mid-2000s.
Note that PDW having a weird view of recovery doesn't explain the big changes made in the recovery criteria in the PACE Trial - he had these views about recovery when the recovery criteria were set:

 

You're right, not all cancers are the same & maybe I could have been clearer.

I am talking about patients who, in the main, had been given the all clear - recovered. Leading quite normal lives and by and large symptom free.

There's always a risk of recurrence with no guarantee, the risk greater or lesser depending on the type of cancer. Just as there's no guarantee someone who appears healthy won't get it.

My experience is based on spending a fair bit of time around people who were recovered & an awful lot more able than me about 20 years ago when my ME was much milder. They spouted this stuff to other cancer patients who were in remission and also to everyone else within reach - on the grounds if it worked for cancer it should be good for everyone.

Also having a couple of friends who were on the flip side and dumped with all the burden of family commitments, elderly and sick parents etc, by people who were recovered. Well enough to go off on holidays and play golf all day but couldn't help out at all because that negativity and burden was bad for them.

 

From Hans Knoop's PhD thesis.


https://repository.ubn.ru.nl/bitstream/handle/2066/65596/65596_cognbethf.pdf?sequence=1
Peter White co-authored a paper with him on full recovery following CBT.

 

I find the timing of the release of the paper interesting.

They can write papers like this one on and on it all comes down to the same mistakes.

Many have already mentioned the silliness of creating a new definition for what recovery is.
There is already a word for what they are actually referring to -- adapting.

This research doesn't tell us anything about recovery from ME only about how CBT specialists can manipulate sick people who are vulnerable and looking for help.

And as for cancer patients and their attitudes. Yes, people don't come to a sickness in a vacuum. They bring who they are and all that's happening.

All that means is that people who were struggling and then get cancer possibly find their strength to deal with other things because the are forced to confront an serious illness. For every person who feels this way there are others who because they were not struggling with life issues do not feel their life needs altering. All this proves is that people have lives and that many people struggle.

Sickness happens. This redefining how people come to be sick is pure bullshit. But I do think that people do struggle to find meaning in suffering and therefore this would be welcome by those who need to hold onto the 'stuff happens for a reason' idea. And THAT is what is being exploited here. It is their (BPS) way in.

It's not only bad non-science; it's morally reprehensible.

 

There's another logical inconsistency with this paper.

According to BPSers in the past ME patients enjoy the sick role and those lovely secondary benefits, in other words enjoying shirking responsibility.

The author here feels a redefinition of recovery, altering patient expectations is perhaps more convenient for the therapist appropriate. So patients should accept that normal function will be never restored - they will never get back to work & child rearing & all the other responsibilities that are a normal part of life.

So the BPS crew claim that patients' desire to avoid their responsibilities is a perpetuating factor, they also claim that patients should just accept recovery, which implies taking up their usual responsibilities, isn't going to happen. In the meantime patients lobby & fundraise for science & research that will help them regain their normal lives & take on all the responsibilities that go with that.

Okay.

 

https://twitter.com/user/status/1327325904385798149

https://twitter.com/user/status/1327326999233392640

https://twitter.com/user/status/1327328308846096384

https://twitter.com/user/status/1327329641921720321

https://twitter.com/user/status/1327334875708403712

 

https://twitter.com/user/status/1327345227955367937

https://twitter.com/user/status/1327346480592678914

https://twitter.com/user/status/1327349131824812032

https://twitter.com/user/status/1327350394377396230

https://twitter.com/user/status/1327351495596122113

 

I agree that people can search for meaning after becoming ill and that the meaning that they find may not be always helpful or accurate. One person I know with ME had therapy (not CBT). Somehow he and his therapist came to the conclusion that he should hand in his professional qualification as a management accountant. Not just that he should not work in the area but actually he should deregister himself and lose his qualifications. This was a married man with children. I could accept if he decided he didn't want to work in the area, at least temporarily, but I don't think handing back the qualification was necessary. But he saw it as some sort of therapy.

 

I have a sofa in my living room. I keep trying to call it an elephant but nobody else will indulge me. Bah!