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

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
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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.
 
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Invisible Woman said:
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.
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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.
 
Marky said:
They excluded patients who "had physical contraindications to exercise", so in a paper on ME, they excluded ME-patients. Brilliant!
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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?
 
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.

Table 3.JPG

I decided to focus on a specific point that I did not see others raising in discussions. Most of my other letters use more references:

Response to: Guided graded exercise self-help plus specialist medical care versus specialist medical care alone for chronic fatigue syndrome (GETSET): a pragmatic randomised controlled trial

The SF-36 physical functioning (PF) outcomes for those in the guided graded exercise selfhelp (GES) group who had a baseline SF-36 PF score ≥45 (call them group B) must have been particularly poor in the GETSET trial.1 We are told that those with a baseline score ≤40 (group A) made up approximately 40% of the sample and ended with average score of 56.9. This means the average outcome for group B, the higher functioning group at baseline, was actually lower, at around 54.9. Also, by definition, group A increased by an average of at least 16.9 (56.9-40). However the whole sample only increased by an average of 8.4. This means that an upper bound on the average increase for group B would be only approximately 2.7, in comparison to the increase of 16.9 for group A. This is an extreme scenario and the difference in improvements was most likely higher than 14.2. It would be interesting if Clark and colleagues could give the exact figure so everyone would be aware of the magnitude of the difference in the response.

Clark and colleagues say the poor results may be due to a ceiling effect. More than 90% of healthy working-age people score 90 or more.2 Therefore, the mean score of 54.9 for group B and 55.7 overall suggests that if there is a ceiling in the effectiveness of GES, it is a long way below normal functioning. I do not believe this was made clear to readers.

Tom Kindlon

Competing interests: I work in a voluntary capacity for the Irish ME/CFS Association.

References:

1. Clark LV, Pesola F, Thomas J, Vergara-Williamson M; Beynon M, White PD. Guided graded exercise self-help plus specialist medical care versus specialist medical care alone for chronic fatigue syndrome (GETSET): a pragmatic randomised controlled trial. The Lancet. June 22, 2017 doi:10.1016/S0140-6736(16)32589-2

2. Wilshire CE, Kindlon T, Matthees A, McGrath S. Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial. Fatigue. 2017;5:1–4.
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The journal did take a long time to reply (over 6 months): I am left wondering whether they asked the investigators for their opinion. I could imagine the researchers might try to put the journal off the letter.


Anyway I've posted it on PubMed Commons: https://www.ncbi.nlm.nih.gov/pubmed/28648402#cm28648402_78211
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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:

"What do you class as recovery?

Peter White would say I'm a success story.

I would like to know what level other people are at whom he classes as having recovered.

To me if I'm recovered, I'm able to come off benefits, work full time, do my house work and have a life.

But when I said this he asked me: "Do you want to go back to the life that gave you ME?"

That's a cop out.

I disagree with his definition of recovery.

If you've improved significantly, to him that is recovery.

I don't believe in what they say 100%.

I believe you get ME and you just have to overdo it and the symptoms come back.

I can manage to a certain extent but part of it you can't control.

I know if I do too much I feel worse but according to them I bring this on by expecting to feel worse.

According to them this is not founded and irrational.

My belief system is holding me back.

They do not believe in any physical basis for the illness like a virus.

At the end of the day it's all very well to talk about attitude but I have a real illness which is more deep rooted.

I take what I need and don't give myself a hard time.

I don't blame myself.

Last time I saw Dr White I could tell he still thought it was partly to do with me.

He said,'Do you think it's down to you?' On my report he has written: "[name] is making good progress. [Name]'s only remaining barriers are [name]'s illness beliefs" /ME
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Kitty said:
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.
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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.
 
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.
 
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.
 
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