The role of partners' fatigue and the patient-partner relationship in the outcome of cognitive behavioural therapy for CFS, 2020, Wearden/Knoop/et al

https://www.sciencedirect.com/science/article/abs/pii/S0022399919306555

https://doi.org/10.1016/j.jpsychores.2020.110133

 

Well, that's a special kind of stupid and incompetent. Great quacking, my ducks.

I don't know if the point of these cheap experiments is to make us feel better for wasting our lives by having people who are healthy and educated make their active lives even more meaningless than ours. Because it kinda does. My daily routine is boring and not much more than passing time but it still amounts to something more significant than whatever this is supposed to be. I have had menial jobs in my life but never this meaningless.

Might as well take up counting the individual knots in the planks of a large building. This is about the same level of contribution.

 

More dubious insights from the correlation is causation crew.

 

This reminds me of the time I tried psychotherapy. It was in the first few weeks I had my first serious episode. I didn't think it would be useful but I basically had no other choices, I was shut out of everything else. I was barely coherent, had difficulty reading or forming sentences. So talking wasn't exactly high on the list of useful things.

I went there with the idea of trying to "explore", I guess, whether it could be why I was sick. At some point the topic was exhausted and although it had been mostly pointless I didn't really have much else to speak of, my life was otherwise pretty great at the time. So I suggested a topic of no importance and that was basically the rest of the sessions. I went through a university and it was a post-doc semester thing.

Had the therapist asked me to rate the importance of this topic, the best I could have given is 1/10. I was very brain-foggy and dizzy all the time so didn't really have the brain power to do more than play along. It was all pretty pointless, but it still occupied something like 6 out of 12 sessions or something like that. On something that essentially ranked below my stock of breakfast cereal at the time.

People like Knoop and his ilk, they focus exclusively on things that interest them, only ask questions that relate to what interests them. Never bothering to check whether it is of any importance at all. Because they assume that since it is important to them, as experts, then it must be important, period. They just latch on the very first thing that provides a grip and never let it go until the grip stops playing along. They can go on pointlessly gripping the useless thing for weeks, months, years, hell even decades.

Expertise without science. Neither pretty nor useful.

 

Meaningless one-off (baseline) "relationship dissatisfaction" data set. Whole lot of regression analysis, to what end?

If the goal or question to warrant further study was to improve care and relationship satisfaction, fine.

But no, it's to improve CBT outcomes for ME/CFS via tweaking the relationship satisfaction. Weird.

 

Who was more fatigued after that - Wearden or Knoop? Or was that a different sort of relationship?

 

I would really want to speak to one of these researchers. What kind of people are they seeing in real life, what makes them think this has any function in real life whatsoever?

I heard a distant relative of mine (a GP) once comment on her practice. She works in a large city, in a pretty "bad neighborhood". She said there were of course lots of MUS, lots of socioeconomic problems, lower "health skills" etc. So apparently, in her mind that goes together and I think, when you put it in a that frame, it would be useful to study. I just doesn't have anything to do with CFS

 

I don't think they see many patients or are able to see the actual person behind their own biases that make patients look like they describe in their theories.

 

Honestly from reading their ridiculous interpretations the people involved in this field clearly have little to no capacity for empathy but have deluded themselves that they have lots of it but because empathy isn't something that can be understood unless you have it they just can't realize it. Like someone who is tone-deaf and can't understand why some people are saying they are terrible singers. You either have it or you don't.

I think on some level they confuse empathy with sympathy and think that in their pathetic attempts at trying to understand what we are speaking about that feigning sympathy is just as good. Except of course feigned sympathy comes off as creepy, but that's a different topic.

It takes a special kind of people to do this job well, to be able to truly understand the substance of another person's life experience. The people involved in BPS/FND/MUS/WHATEVER are the exact opposite of that kind of special. It's a flaw that they are unable to see anymore than we can imagine life before we were born, a blind spot that can't be taught and its absence is not notable to someone who never had that ability.

Which is all seriously disappointing because most people have perfectly adequate capacity for empathy, enough for this anyway. But the field of psychosomatics seems to be a magnet for those who are most unable to do the job in the first place, enabled by a circle jerk mutual admiration society of sorts from other people who lack the same but are equally oblivious to it and reinforce the flaws that make the field irrelevant to real life problems.

What's ironic is that this is all basically a giant attempt at making psychology more relevant in medicine and in the end it will effectively show, without a shadow of a doubt, that both psychology and psychiatry are completely unequipped to deal with this and should ideally remain out of it indefinitely. Icarus syndrome of sorts.

 

I wish I could gold star this. Patient interactions with "open minded" researchers are very powerful for better understanding.

 

Exactly.

They talk about "worse CBT outcome for patients", but they only measured questionnaire answering behaviour. Those relationship factors may well alter how someone answers a questionnaire, even if there is no difference in participants underlying health!

 

Does anyone have access to the full paper?

 

https://sci-hub.tw/10.1016/j.jpsychores.2020.110133

 

I'm m pretty sure there has been a similar one for parents, though can't find it

 

1) What I find odd is that table 2 reports all sorts of correlations with partners’ fatigue severity. But there's nothing wrong with partner's fatigue. They don't have abnormal fatigue. What the CBT model should be interested in is how all the factors measures in the partners (psychological attributions, solicitous responses, negative responses, relationship dissatisfaction and estimated fatigue severity of the patient), correlate with the fatigue severity of the patient. Because that's the fatigue that is abnormal. Yet I don't see that reported in the paper (I would expect to find a table for this). Am I overlooking something cause it seems odd that this isn't reported? If thoughts and behaviour are really important in perpetuating CFS than one would expect the partner's thoughts and behavioural response to the patient to be rather important as well.

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2) If you look at the regression models, it's remarkable how little the measures the authors have selected, determine treatment outcome. For both fatigue and functional impairment the model that includes the four variables measured (Partners’ fatigue severity at baseline, Relationship dissatisfaction partner, Solicitous responses partner and Negative responses partner) explained only 2% of the variance in treatment outcome... The authors write about this:

I think that suggests that their model is wrong and that treatment outcome is determined by other factors. Unfortunately, this possibility is not discussed in the paper.

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3) For those who don't know this yet: 'sollicitious response' is a codeword for caring for patients. It involves 'paying attention to fatigue or encouraging patients to rest.' A previous study by the authors wrote about this:

So first they emphasize the importance of addressing this in therapy (based on correlations) and only later on do they try and fail to replicate their results...

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4) They don't seem to have learned much because in this paper they write:

This is once again wrong not only because it is based on a regression model that cannot determine causality but because the results convincingly showed the exact opposite, namely that these factors aren't important in determining treatment outcome. Relationship satisfaction was tested 18 times in different models and with different variables. The odds ratios are as close to 1 as can be. The sole reason some of these were statistically significant was that they didn't correct for multiple comparisons and that used an enormous sample size of approximately 800.

That makes you wonder: did the authors keep collecting this data until they could report something that was statistically significant? And when that didn't happen they seemed to have waited and waited until the sample size was so big just about every small difference became statistically significant. Lots of problems with this study...

 

In the Background section: (bolding is mine)

There is evidence that behavourial factors play a role in the maintenance of symptoms."
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These are: negativity about fatigue, disturbed sleep, lowered activity level.

The cited reference paper for the above statement is also by Knoop in which he/she states: "Cognitions and behaviour are thought to perpetuate CFS." And "They may play a role in the perpetuation of symptoms."


For comparison, I searched Pubmed for "CBT for fibromyalgia" research.

In contrast to ME, there were few papers concerning CBT for fibro. Of those, most were for depression or improving coping skills. One was to try to reduce activity avoidance.

Pointing the finger at the partner of the person with ME (or the parent) for occasionally being over solicitous or once in a while snapping (negativity) at the patient. Are those big factors in why CBT doesn't work?

CBT practioners obfuscate the true picture by using the worst cases (someone always oversolicitous, someone always negative about their partner) to assign guilt and possibly recruit average, well-intentioned partners and parents of those with ME.

Something claiming to be a cure- or help-all, is called snake oil.

 

The paper writes:

That seems to suggest that patients weren't exaggerating. If patients were exaggerating their complaints one would expect the estimates by their partners to be lower.

 

In the good old days when I was first assessed for disability benefits, the examining doctor turned to my husband before he asked me anything and said that patients tend to overestimate what they can do so he should correct me if I was not being accurate.

I have met many sick people since then and most (not all I'll admit) hide how ill they are and make light of their suffering and disability.

 

My ME consultant liked my husband coming to appointments even though he didn't say anything for most of the appointment. I tended to forget bad patches, or think I'd been bedbound for a week or so when it had been a month or more.

I think most of us are so busy focussing on ways of getting the things we need to do done, we don't always accurately remember or report how little we can do.

Also we normalize how impaired we are but a healthy partner sees it.