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

[rvallee]

The authors need to publish this information to allow independent examination.

Indeed they do. This has clearly been a pattern with this type of research, and especially this group of, uh, "researchers". Along with the practice of splitting papers to present rosy cherry-picked conclusions in one paper and burying the data that disprove them in another, or not at all. Those deceitful practices need to end, they are transparently deliberate, and the fact that editors, reviewers, funders and overseers allow them does not change that they are clear and willful deceit.

 

[Andy]

Trial By Error: More on the Perplexing Dutch Claim that Null Results for Objective Measures of Physical Activity Are Irrelevant to Fatigue

"It is worth pointing out that Professor Knoop himself took the opposite view about the relationship between fatigue and physical activity as a co-author of a 2013 paper titled “Relationship between objectively assessed physical activity and fatigue in patients with rheumatoid arthritis: inverse correlation of activity and fatigue.”

This 2013 study offered this context: “A few other studies have investigated the association between physical activity and fatigue, and none of these studies included patients with RA [rheumatoid arthritis].” The study found that, “among patients with RA, a higher level of daily physical activity was associated with reduced levels of fatigue.” Ok, then!"

https://virology.ws/2023/08/08/tria...-physical-activity-are-irrelevant-to-fatigue/

 

[Dolphin]

Somebody sent me this:
---
is it suspicious that the cutoff for severe fatigue is so perfectly and strategically placed exactly at the middle between CBT and control group results? especially given that the difference in fatigue scores between the groups aint that big
---
I don't know whether the thresholds were post hoc or not.

 

[Sean]

I don't know whether the thresholds were post hoc or not.

They must be getting good at guessing them by now.

 

[ME/CFS Skeptic]

I don't know whether the thresholds were post hoc or not.

I think a threshold of 35 has been used before for the CIS questionnaire see for example: The assessment of fatigue: Psychometric qualities and norms for the Checklist individual strength - PubMed (nih.gov)

 

[Arvo]

An article was written about ReCOVer, interviewing Knoop and Kuut, in VGCT magazine, the magazine of the dutch association for behaviour and cognitive therapy. (Vereniging voor Gedragstherapie en Cognitieve Therapie)

Screenshots pulled through an image translator at the bottom.

It describes the standard approach and views Knoop has been using for 20 years, and gives a rosy and misleading picture of CBT for Long Covid, but people are understandably mad because for the magazine (their in-crowd) Knoop and Kuut have taken some of the disguise off and outright say that it's cognitions and behaviour that are in the way of recovery. None of this is surprising or new, but often outside their bubble woolly language is used to not say that so clearly outright.

In the article Kuut says:

"The infection is the trigger for the severe fatigue. We think that behaviour and beliefs then ensure that some of the patients do not recover. And that adjusting that behaviour and those views can therefore contribute to recovery."

This is CBT for ME 101, and the basis on which Knoop has been working for 20 years (and the overall CBT-for-ME movement for 34). The "can" and "contribute" are even hedgy and watered down for an NKCV employee: Knoop believes cognitions and behaviour are the key to recovery. Hence cognitive-behaviour therapy being the treatment.


Peter Neehus addressed Chantal Rovers on Twitter (screenshot), saying:

"Myself (+ other #LongCovid #ME #MEcfs patient) are very shocked by how Tanja Kuut and Hans Knoop in VGCT Magazine make one big CBT/GET show of the research that also includes your name [Chantal Rovers]. Was this even the intention? You have written about this in a more nuanced way before."

To which Chantal Rovers replies:

"I didn't know this piece. I certainly do not support the comment 'we think that behaviour and beliefs ensure that a portion doesn't recover'. This was not looked at at all in this study and we even included a sentence about it in the discussion of the article."

And I really can't with this woman.
a) The whole study she's participated in is based on that notion.The name subtlely gives it away, cognitive behaviour therapy targets...surprise...cognitions and behaviour that impede normal functioning.
If she doesn't agree, then what was she doing there, why did she collaborate?
b) She's been collaborating with Knoop for at least 8 years so she couldn't not have known about his views or how NKCV works; she "certainly do[es] not support" the whole core of his beliefs which form the foundation of the study she worked on with him and Kuut?
(She also worked with Bleijenberg, Raaijmakers, Van der Meer - the psychosomatic COFFI project: "Investigations in these cohorts suggest that the host (rather than the pathogen) is the key determinant of the persistent illness, but the pathophysiology remains unresolved.")

The sentence I think she's referring to, stuck at the bottom of the paper, is probably:

"Of note, applying a cognitive-behavioral approach to the treatment of post-COVID-19 fatigue does neither imply that its cause is psychological nor does it negate a possible somatic cause."

which looks to me like the regular linguistic diversion: CBT proponents make an opportunistic difference between aetiology, - the trigger at the beginning, which is allowed to be an infection - and maintaining/perpetuation which is caused by wrong cognitions and behaviour. It's mostly a question of time: the cause-cause was once an infection, but now the cause for your disability and symtoms is your beliefs and the fact that you don't expand your activity and allow yourself to fall asleep during the day.

So this sentence is double-talk which will mislead readers who are unaware of their habitual word games.

 

[Grigor]

I'm also very confused what distinction she's making. Maybe she only focuses on fatigue whereas the comment in the article suggests full recovery from long-covid of all symptoms? Not sure...

 

[dave30th]

Her statement is double-talk—like Captain Renaud in Casablanca being shocked, shocked to find gambling going on. She’s playing innocent—she participated fully in the research but now says she disagrees with the entire premise of the study?? Come on!! The PACE study included a similar meaningless disclaimer. What bullshit!!

 

[Arvo]

I'm also very confused what distinction she's making.

It's a bit unclear what exactly she is claiming, although I can't see a good explanation. To me it looks like she takes a piece of the whole of Kuut's quote, the bit in italics:

"The infection is the trigger for the severe fatigue. We think that behaviour and beliefs then ensure that some of the patients do not recover. And that adjusting that behaviour and those views can therefore contribute to recovery."

and tries to make the argument that the study didn't look at if the participants who weren't claimed as improved by Fit after COVID, so during the study, did not get better because of their behaviour and beliefs.

Of course if this is the case this would be misleading because that snippet of remark was made to discuss the well-known basic approach of CBT for this type of illness including the one Rovers just participated in (and nonsensical because even such a misdirected claim is still exactly what has been claimed by the CBT-for-ME movement for decades).

I can only imagine she would do such a thing because outright discussing what CBT for long covid fatigue is based on rips up a facade of "caring researcher who takes these patients physical illness serious" -it makes her look bad both as an infectious disease physician and as a Long Covid patient champion.

But the only other option I see is that she indeed tries to act like this is all new and surprising to her and not at all what she stands for (again because it makes her look bad), like she distances herself from it. And that would even be more absurd given, like discussed, this is the whole foundational premise of the study she participated in and she's known and collaborated with Knoop, Van der Meer (her mentor) and Raijmakers (all COFFI now) for years.

 

[Grigor]

and tries to make the argument that the study didn't look at if the participants who weren't claimed as improved by Fit after COVID, so during the study, did not get better because of their behaviour and beliefs.

Sorry, I'm not completely sure what you mean to say here but my brain isn't fresh today either.

 

[Arvo]

Sorry, I'm not completely sure what you mean to say here but my brain isn't fresh today either.

Neither is mine! Which is why the language is probably too hazy, my apologies, I will try again.

What I mean is that to me it looks like she tries to pretend that the quote "We think that behaviour and beliefs then ensure that some of the patients do not recover." is about the participants of the ReCOVer study that did not improve.

So she seems to be saying that she "certainly do[es] not support" the claim that the participants of ReCOVer, the ones that didn't improve, didn't because of behaviour and beliefs, because that was not what the study looked at.

I could be mistaken, but that's how I read it, like a straw man argument.

EDITED TO ADD:If that is the case, then also note that Kuut and Knoop specifically say in the interview "What we also don't know is why forty percent of patients do not respond to CBT treatment."

But, like I said, the only other option I see is even more absurd.


Does that help or can I better make another attempt with a fresher brain?

 

[Solstice]

Neither is mine! Which is why the language is probably too hazy, my apologies, I will try again.

What I mean is that to me it looks like she tries to pretend that the quote "We think that behaviour and beliefs then ensure that some of the patients do not recover." is about the participants of the ReCOVer study that did not improve.

So she seems to be saying that she "certainly do[es] not support" the claim that the participants of ReCOVer, the ones that didn't improve, didn't because of behaviour and beliefs, because that was not what the study looked at.

I could be mistaken, but that's how I read it, like a straw man argument. And, like I said, the only other option I see is even more absurd.


Does that help or can I better make another attempt with a fresher brain?

Depends on who's brain you plan on taking .

 

[Arvo]

Depends on who's brain you plan on taking .

Ha, ha, ha!

I should totally start a next try with a *squelch*, unfortunately I will probably not remember to do that.

 

[EndME]

"The infection is the trigger for the severe fatigue. We think that behaviour and beliefs then ensure that some of the patients do not recover. And that adjusting that behaviour and those views can therefore contribute to recovery."

I find this reasoning quite funny when it comes to Long Covid because there is an abundance of data on patients fully recovering from Covid, only to weeks later start experiencing Long Covid. Says a lot about the robustness of their model.

 

[Sean]

"The infection is the trigger for the severe fatigue. We think that behaviour and beliefs then ensure that some of the patients do not recover. And that adjusting that behaviour and those views can therefore contribute to recovery."

"Of note, applying a cognitive-behavioral approach to the treatment of post-COVID-19 fatigue does neither imply that its cause is psychological nor does it negate a possible somatic cause."

FFS, those two statements are completely incompatible.

The BPS club have always defined post-COVID-19 fatigue (Long Covid, ME, etc) as a pathological post-onset psycho-behavioural response, independent of the specific initial onset process/trigger. And they have always claimed that the treatment/cure is modifying the patient's behaviours and beliefs.

It couldn't be more explicitly psychological that.

When Peer-Review Goes Wrong

A brand new original remake of the classic horror farce, coming soon to a clinic near you.

 

[Trish]

And it's worse than that, as the psychobehavioural model is itself contradictory, with boom and bust diagnosed for some, and too much rest/deconditioning/fear of activity for others, so whatever the patient is doing is allegedly the reason they are still sick.

 

[Arvo]

And it's worse than that, as the psychobehavioural model is itself contradictory, with boom and bust diagnosed for some, and too much rest/deconditioning/fear of activity for others, so whatever the patient is doing is allegedly the reason they are still sick.

Yes, that's the trick Bleijenberg built in the Dutch CBT for ME (which neatly deflects criticism that not all patients are avoiding activity as some still do stuff), and it's really nasty, because no matter what state you're in, you are always behaving wrong and are therefore always in need of having that wrong behaviour corrected via CBT.

I have talked some more on what this entails and how it's used in ReCOVer here, here, here, here and here.
(The last link give some more details on the norm score and how it is determined)

The basic things to know, apart from the key feature that it captures all patients as CBT consumers, is that this is merely used as a way to decide when graded increase in activity is started (low-actives immediately, higher actives later), and that the distinction is made by determining who is "low active"; "high active" is anyone who is not "low active".

 

[Grigor]

Neither is mine! Which is why the language is probably too hazy, my apologies, I will try again.

What I mean is that to me it looks like she tries to pretend that the quote "We think that behaviour and beliefs then ensure that some of the patients do not recover." is about the participants of the ReCOVer study that did not improve.

So she seems to be saying that she "certainly do[es] not support" the claim that the participants of ReCOVer, the ones that didn't improve, didn't because of behaviour and beliefs, because that was not what the study looked at.

I could be mistaken, but that's how I read it, like a straw man argument.

EDITED TO ADD:If that is the case, then also note that Kuut and Knoop specifically say in the interview "What we also don't know is why forty percent of patients do not respond to CBT treatment."

But, like I said, the only other option I see is even more absurd.


Does that help or can I better make another attempt with a fresher brain?

Thank you. Maybe. I'm really not sure. Maybe she's also back peddling to some degree. I don't think she had so much push back ever. This study really hurt her reputation. Many well respected scientists and patients were unhappy with it. Including with her defence of the study.

 

[Solstice]

Thank you. Maybe. I'm really not sure. Maybe she's also back peddling to some degree. I don't think she had so much push back ever. This study really hurt her reputation. Many well respected scientists and patients were unhappy with it. Including with her defence of the study.

Sometimes it's better to acknowledge a mistake than to cover it up with such a transparent attempt to deflect blame.

 

[Sean]

And it's worse than that, as the psychobehavioural model is itself contradictory, with boom and bust diagnosed for some, and too much rest/deconditioning/fear of activity for others, so whatever the patient is doing is allegedly the reason they are still sick.

Yes, that's the trick Bleijenberg built in the Dutch CBT for ME (which neatly deflects criticism that not all patients are avoiding activity as some still do stuff), and it's really nasty, because no matter what state you're in, you are always behaving wrong and are therefore always in need of having that wrong behaviour corrected via CBT.

They have, quite deliberately and systematically, created a model that is unfalsifiable, where they can never be wrong, only the patient can be wrong. It is never their fault, apart from some tiny concession about not explaining marketing it properly to the patient.

They know exactly what they are doing. Which is why I am such a harsh critic of them. They have no excuses whatsoever. They never did, but certainly post-2015, starting with the IOM report, and many since from around the world, especially NICE, they have nowhere to hide. Any further indulgence in them and their 'methods' is just cruelty and cowardice by the rest of the power structure.