Efficacy of cognitive behavioral therapy targeting severe fatigue following COVID-19: results of a randomized controlled trial 2023, Kuut, Knoop et al

I think these explanations exist to persuade non-patients of the validity and importance of treating ME/CFS with CBT.

The target for this misinformation is not us the patients but grant reviewers, doctors, therapists, legal workers, etc.

 

It's what this forum is for, isn't it.

 

Was typing out something with regards to supportive CBT. I went to a supportive psychologist after directive CBT/GET didn't "fix" me. Nice guy, felt good talking to him but I stopped after 5 meetings or so. Didn't give me anything a talk with a family member or friend couldn't give me. That and knowing some psychologists personally is making me question the entire branch of research tbh.

 

“Research showed that a substantial number of patients with severe fatigue do not have deviant physical activity levels.(7) This was also found in our sample, i.e. 81% of participants had a fluctuating active activity pattern, and only 19% had a low active activity pattern.”

In other words, they are claiming that people who are severely fatigued, have a similar physical activity level as people who are not severely fatigued.

But then ask yourself the following question, why do they write that in a reply and not in their article? Might that be because one is peer reviewed and the other one is not?

In everything they write, you very much get the impression that they make it up as they go along and no matter what they find, it will always support their conclusion that CBT is effective.

 

That was a quote from the recover study, or I should say from the reply from the authors from that study, so they say that applies to the people with long Covid in their study.

and I fully agree with you it doesn’t make sense, it sounds more like a copout.

 

The message has always been the same. These patients aren’t experiencing anything we don’t deal with everyday. They just lack the resiliency to handle common adversity.

 

A beautiful tweet by professor Rovers as a reply to @dave30th Her reasoning is quite special.

 

strange form of reasoning
https://twitter.com/user/status/1679553906928496640

 

It's genuinely hard to make less sense than bathroom graffiti, but there it is.

This is nothing but thinly veiled bigotry.

 

Double-Dutch to me.

 

Please note that when looking through some additional info, I discovered that I confused two papers on guided self-instructions. This means that while I know they used actigraphy pre- and post CBT, and that they noted that "The perpetuating factor[s] physical activity (r= -.20; p= 0.081) .... showed no statistical significant association with treatment outcome", I don't know if it made it to the final publication.

It became an even stranger story, as the study which the post-CBT actimetry was done for was submitted as a study on treating CFS with "self-guided instructions", but published as a paper on idiopatic chronic fatigue, with Fukuda as its criteria.

Submitted:

Published:

(The other paper, "Is a full recovery possible after cognitive behavioural therapy for chronic fatigue syndrome?" by White, Knoop et al. (2007) still stands as an example of actimetry being done post-CBT that showed "there was no significant correlation between the decrease of fatigue severity and increase of physical activity", which was not part of the publication of the study. (Also: "Re-examination of the available data of the 96 patients in the recovery study [91 of whom "complained of post-exertional malaise"] showed that after CBT and when measured with the actometer, 59 patients (62%) had a level of physical activity that was within the mean minus one standard deviation of healthy controls. At baseline, before treatment, 35% of the patients had an activity level within normal limits." There were also 13 dropouts.)

I made an edit in my original post and will change it when I'm able to.


Edited here: more info I forgot to add

 

(@dave30th )
I have been looking through the dissertation to see if I could find some information on what exactly the dutch division by Knoop & co in "low activity" and "high activity" (or in the case of RECOVer "fluctuating active activity pattern") entails beyond the vague descriptions, and how this division is determined exactly.

In the dissertation I found this, from: "Efficacy of guided self-instructions in the treatment of patients with
chronic fatigue syndrome: a randomised controlled trial", submitted version (which would be published as a study on idiopatic chronic fatigue, determined by Fukuda).

When discussing the dutch method in the introduction of his dissertation, Knoop opens with: "In the protocol of Bleijenberg et al (26) the pattern of physical activity determines the type of interventions that are used after the regulation of the sleep-wake cycle. An actometer, a motion sensing device that can quantify physical activity, is used to assess the activity
pattern.(27) Two types of activity patterns are distinguished:"etc.

Reference 27 is again to Van der Werf et al., 2000, Reference 26, regarding the protocol for this approach, is to a book chapter Bleijenberg, Prins and Bazelmans wrote for the 2003 "Handbook of chronic fatigue syndrome".

It says:

A typically passive patient has an average daily activity score, recorded by an actometer around the ankle, below the norm score of CFS patients (=66) on 11 or 12 of a total of 12 days. (From Vander Werf et al. 2000)

(When discussing determining activity level through asking questions) :
"Although nearly all CFS claim that they hardly do anything anymore, the distinction between relatively active patients and those with a low activity pattern usually becomes much clearer.”

“The patient with a low activity pattern spends a great deal of time lying down, does not walk for long periods, and goes out infrequently.” (with short bit on how much support a patient receives b/c they do not live alone influences this)

When not determined by actometer but by anamnesis, one can distinguish between relatively active and passive patients, “identify the definitive activity type”, by their daily records:

“Relatively active patients still are able to do some paid work for several hours per day, do some domestic chores, and are socially active to some extent or engage in certain leisure activities or hobbies. By contrast, passive patients mainly spend a lot of time in bed, seldom leave the house, and undertake few to no household tasks. Relatively active CFS patients mostly have cognitions that entail making high demands on themselves, wanting to do (too) much, and refusing to accept the current situation. Low-active CFS patients primary exhibit anxious cognitions about the negative effect that activity may have on their symptoms.”

They also state that “passive or low-active patients” constitute “about 25% of all CFS patients.”

Sidenote: the aim of CBT according to this chapter is “full recovery”

 

I'd like to add that while the above is important, it does not matter IMO in the issue that the announced actigraphy outcomes, the only objective outcomes, were left out of the study, and that that is especially bad as they had a poor result and as such were relevant to the conclusions of the study.

These authors seem to have a knack for relocating the discussion.

It does not matter in which "type" category the participants fell. The issues are:

• that the actigraphy was announced in the study protocol to be done before and after CBT as an outcome (also no need to whine about exactly which type of outcome, particularly as they themselves decided the hierarchy that put objective outcomes in the "other" category)
• that these acrigraphy outcomes were not mentioned in the study publication
• that when inquired about them it turns out they had a poor outcome
• that this poor outcome is very relevant to the conclusions and discussion of the study, so
• that leaving out these announced objective study outcomes in the light of that is extra problematic.

But if you want to go there: the exit point of both vaguely-determined "types" of actives is that they both experience reduced ability to do their activities; the very issue is that they are limited in what they can do, only they are crudely divided in basically bed/sofabound and Wessely&Chalder's boom-bust cycle. Also note that it looks like the division is mostly done by deciding who is "low active" - the "relatively actives/fluctuating actives" are basically the rest. So it doesn't mean, as can also be seen in the descriptions above, that they don't have a deviant physical activity level: Relatively actives/fluctuating actives do things which are then followed by periods of rest (instead of having consistently sustained activity levels like healthy people). This is - and I can't believe I even have to type this- the reason that graded increases in activity are the key part of CBT as it aims at a gradual increase of activity up to "full recovery" and to break through the "activity avoidance" this way.
Patients get CBT for ME (and in this case Long Covid) because their activity levels are not what they are supposed to be according to the therapists/researchers.

For both "types" graded increase in activity is the treatment, only one starts sooner with this than the other. Also in ReCOVer. Why would they focus the treatment on graded increases in activity when their patients do not have deviant activity levels? Given the way the division between "types" seems to be made, that circumstance would be spectacular.

I highly doubt the Van der Werff paper says that "Research showed that a substantial number of patients with severe fatigue do not have deviant physical activity levels.", and if it did, if it was solidly substantiated. Remarks by Knoop and Bleijenberg made after this paper contradict this claim, and in 2008 Knoop tried to work in that direction, but he had no substantiation for it. If Van der Werff had said that in a substantiated way I would have expected him to use it.

Even if "relatively high actives", or as ReCOVer calls them in the letter "fluctuating actives", are able to do some things, an increase in frequency and sustainability of activity should be detectable if their core characteristic is that they are just not bedbound/lying down most of the day. The notion that you can't really assess activity increase in 81% of participants that are not bedbound, while graded increases in activity has been part of your treatment, is ridiculous IMO. It also makes me wonder how much activity-dump, stopping other activities so the tasks chosen for graded activity expansion can be done, has taken place.

(If someone goes from 4 hours of work 3 times a week and some light house chores every now and then to recovered, working 32 hours (4x8), doing house chores like hoovering and scrubbing the bathtub, walking the family dog more often and lengthy, going out with the kids etc., that shows up. The whole deal is that those who are fluctuatingly active are no longer fluctuatingly active but consistently and increasingly so.)

The part in the letter that adresses this is...wow. I'd love to go on commenting, but I really can't brain anymore. Made notes, maybe next time.

 

Thanks to @Mark Vink I suggested to CID Editor that my letter is open access like the original Kuut et al article. They have accepted my argument in favour of open publication. Should be available in full shortly

 

Well done!

 

Unless this is written poorly, this is not a valid method of assessment. If it means any acceleration, rather than total distance covered, or average total distance covered per 5-minute interval.

It wouldn't tell the difference between walking and just shaking your foot while sitting reclined. And given the patterns of the past, I assume the worst interpretation here, that they used a method that would artificially distort the measurement on purpose, it never fails to hold.

 

“a substantial number of patients with severe fatigue do not have deviant physical activity levels“

yes obviously, if you are very tired, your level of activity is the same as when you’re not tired.

 

Final presentation of my correspondence regarding this article in full (excluding the references for some reason):

Titled: Issues with Expectation Bias, Absence of Data Relating to Objective Trial Outcome Measures, the Use of Low Quality Trial Design Methods and Choice of Flawed Psychological Model in ReCOVer Trial for Prolonged Fatigue Post Covid-19 Infection Get access

Joan S Crawford

https://academic.oup.com/cid/advance-article-abstract/doi/10.1093/cid/ciad397/7216395