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

"The entire premise of the CBT/GET approach to ME/CFS, and now long Covid, is that patients harbor unhelpful beliefs about their illness and pursue strategies that keep them sick—in other words, they don’t engage in enough activity and remain severely deconditioned."
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And did they test for deconditioning, or just assume it, as it tradition for psychosomatic studies?
 
Sean said:
And did they test for deconditioning, or just assume it, as it tradition for psychosomatic studies?
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of course that’s another interesting one as an aside: the assumption that for those with ME/CFS (and bearing in mind different severities have different ‘thresholds’ where you are over exerting) deconditioning wouldn’t happen if we are using our muscles. I know that (and was shocked by) car parks being moved further away at my work place when I was pretty ill led to my calves getting more worn down and would have looked to someone presumptive like deconditioning [from not using them] when it was the opposite in cause. I also know I realised this at that point having had the condition for decades and denied this observation at first for many years because I also ‘believed the truism about muscles’ and it took years of the obvious opposite (more walking cumulatively ie day in day out = smaller calves) banging me over the head.

This is quite different to but not contradictory to the ability to, short term only (ie not cumulatively when you try and keep it up over time - although that wanes too as I got ‘less fit’ and more I’ll with the me/cfs in general) how just ten bicep curls with a tiny weight could ‘rip’ the muscles in arm enough to quickly show noticeable difference. Whereas those in gym around me were doing all sorts of huge amounts literally carefully doing ten tiny curls I got more ‘effects’. But as I say this was different it turns out as it doesn’t last either.

there are so many assumptions/presumptions behind the deconditioning thing it drives me nuts. It’s like a religion to the point people think looking at someone’s muscles makes them a liar about their exercise and ridiculous things like the belief ‘it [deconditioning from ‘doing less ’] must have happened in weeks’ because someone goes from being an athlete to ill with ME overnight I just don’t think al would be backed up by the observations. Even if it didn’t harm ME 'fitness' and going downhill illness-wise in the general, I’ve realised that I’m not sure doing muscle things ‘preserves musvle’ in the way they assume and if it does then it certainly would be with caveats about limits and only when someone’s body isn’t ‘drained’ (ie I wonder whether there is something in the recovery or doing process that if you are over threshold or in PEM means it’s not a good thing)
 
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Yesterday Knoop gave a talk on ReCOVer at a Long COVID symposium in Amsterdam, The Netherlands. A CBT specialist criticised Knoop and earlier in the day she got applause from the whole room when she stood up and distanced herself from CBT as curative treatment. (See S4ME posts here.)

At the symposium Knoop claimed CBT helped for PEM. (See photo below, credit: Pascal Grootveld. I can't link to the actual Twitter account anymore.)

The slide says:

Knoop's slide at the symposium said:
Secundary outcomes
After CBT (vs CAU) on T1 and T2

  • Improved physical functioning
  • Improved social functioning
  • Less other physical complaints (shortness of breath, sleep problems)
  • Less concentration problems
  • Less often PEM (increase of complaints after exertion)
And:
  • Little dropout
  • Safe treatment
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Of course he cannot claim that based on the study. (See screenshot detail outcomes ReCOVer, credit: Rien de Böck)

And they determined physical function with SF-36, but I find it gobsmacking that he has the audacity to claim "improved physical functioning" when the actometer results showed nothing of the sort.


Also, the presentation was accompanied with a "cheesy video" where someone says "it has brought my life back" (Pascal Grootveld, Xitter). I hope the symposium attendants saw the cringyness of showing a commercial at what is supposed to be an exchange of science.

And I know I sound like a broken record, but Knoop set this project up to (and got the grant money for) studying if they could prevent chronic fatigue after the acute stage of COVID, and then stretched the length participants could be "fatigued" from max 6 to max 12 months without good reason, while saying they could still claim prevention.

Therefore I find his claim that he can treat any Long COVID patient, also those ill for years, with CBT extra misleading.
 

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  • 2023 detail Kuut Knoop ReCOVer outcomes.PNG
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Found this in my email inbox this morning courtesy of NZ's Goodfellow Unit and Bruce Arroll —

Good morning Redacted, here is your latest Gem
A well-conducted RCT from Amsterdam1 found that Cognitive Behavioural Therapy (CBT) was effective for long COVID.

Patients had to have proof of being COVID-positive and had fatigue 3-12 months after and were randomised to 17 weeks of CBT or care as usual.

The majority of patients were not hospitalised for COVID-19. The outcomes were done at six months. Patients were omitted if they had significant depression.

The CBT was aimed at sleep, unhelpful beliefs about fatigue, low activity level, perceived low social support, fears and worries around COVID-19 and poor coping with pain.

Some CBT was done online, and some face-to-face. The effect sizes were NNT = 4 for reduced severe fatigue and 2.5 for not being chronically fatigued. Most participants were no longer severely fatigued, but a group of patients remained severely fatigued.

Goodfellow Gems are chosen by Goodfellow Director, Bruce Arroll to be either practice changing or thought provoking.​
 
Knoop in response said:
We would like to thank the VGCt for the opportunity to respond to Ms Utens' letter
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That would be Emeritus Special Professor Lisbeth Utens.


Knoop said:
A major objection seems to be that the application of CBT assumes that the cause of post-COVID-19 fatigue is psychological. We explicitly state in our publication that an effect of CBT does not mean that the cause of the complaints is psychological, and that (neuro)biological research into the complaints is necessary. A positive effect of CBT implies dealing with the complaints differently can promote recovery in some of the patients.
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The protocol A randomised controlled trial testing the efficacy of Fit after COVID, a cognitive behavioural therapy targeting severe post-infectious fatigue following COVID-19 ReCOVer: study protocol (2021, Trials) said —

Trial protocol said:
Fatigue-related behaviours, cognitions and emotions: Based on the cognitive behavioural model for fatigue in CFS and fatigue in other long-term conditions, several fatigue-related behaviours, cognitions and emotions are assessed. These are dysfunctional beliefs assessed by the J-FCS [...]
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Knoop said:
In addition, we also find the quote in the article "we think that behavior and views ensure that some people do not recover" to be unsatisfactory. We regret that some people may feel hurt by this comment. This was and has never been our intention.
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Then why was it included in the paper? You are the senior author with oversight of the study. And of course the non-apology: "sorry if you felt offended".

Actigraphy is not a good proxy for perceived fatigue.
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No. As it never seems able to confirm the biased subjective report findings used throughout this type of research.

In the published protocol, we listed all primary and secondary outcomes in advance (3) and reported them in our publication. Actigraphy was not a primary or secondary outcome measure.
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Not listed in primary or secondary outcomes, but is in —

Other study outcomes
Activity: An actigraph is used to assess the participant’s level of physical activity. The actigraph is worn around the wrist for 14 consecutive days and nights for a reliable estimate of daily activity for 12 full days. The actigraph has been shown to be a reliable and valid instrument for the assessment of physical activity [53, 67].

Sleep parameters: During the 14 days participants wear the actigraph, a sleep diary [68] is also completed daily, if possible within one hour of getting out of bed in the morning. Participants have to fill in (1) the time they go to bed (in hours and minutes), (2) the time they try to fall asleep, (3) the sleep onset latency, (4) time awake at night, (5) time out of bed, (6) time of waking-up, (7) time of getting out of bed and (8) a rating of the sleep quality (scale 0–10) [69]. Sleep problems are also assessed by the ISI [48] and the subscale sleep-rest of the Sickness Impact Profile (SIP) [70, 71].
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And please just stop with "seriously tired".
 
Apologies if this has been highlighted already

https://academic.oup.com/cid/article-abstract/78/4/1078/7331103

JOURNAL ARTICLE Positive Effects of Cognitive-Behavioral Therapy Targeting Severe Fatigue Following COVID-19 Are Sustained Up to 1 Year After Treatment

Tanja A Kuut, Fabiola Müller, Irene Csorba, Annemarie M J Braamse, Pythia Nieuwkerk, Chantal P Rovers, Hans Knoop

Clinical Infectious Diseases, Volume 78, Issue 4, 15 April 2024, Pages 1078–1079, https://doi.org/10.1093/cid/ciad661 Published: 27 October 2023 Article history

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Extract

To the Editor—Recently, our article entitled “Efficacy of Cognitive-Behavioral Therapy Targeting Severe Fatigue Following Coronavirus Disease 2019: Results of a Randomized Controlled Trial” [1] was published in Clinical Infectious Diseases. This study demonstrated a beneficial effect of cognitive-behavioral therapy (CBT) in reducing severe fatigue following coronavirus disease 2019 (COVID-19), as compared with care as usual. All secondary outcomes also favored CBT. Positive effects were maintained up to 6 months post-treatment [1].

In this letter, we present the 1 year follow-up outcomes of CBT for post–COVID-19 fatigue. All details on the methods used in this follow-up study are described in the published study protocol [2] and the Supplementary Appendix. In this long-term follow-up study, all 57 patients randomized to CBT were eligible. Of them, 52 participated. For ethical reasons, patients randomized to care as usual were offered CBT and could therefore no longer serve as a control.

The primary outcome was fatigue severity. Secondary outcomes were physical functioning, problems with social functioning, somatic symptom severity, problems concentrating, and proportions of patients being no longer severely fatigued, no longer severely fatigued with a reliable change, and not chronically fatigued. Additionally, for each individual patient, it was calculated whether the change in fatigue severity between 6 months and 1 year post-CBT was reliable and/or clinically significant.

Issue Section: Correspondence
 
Dolphin said:
Apologies if this has been highlighted already

https://academic.oup.com/cid/article-abstract/78/4/1078/7331103

JOURNAL ARTICLE Positive Effects of Cognitive-Behavioral Therapy Targeting Severe Fatigue Following COVID-19 Are Sustained Up to 1 Year After Treatment

Tanja A Kuut, Fabiola Müller, Irene Csorba, Annemarie M J Braamse, Pythia Nieuwkerk, Chantal P Rovers, Hans Knoop

Clinical Infectious Diseases, Volume 78, Issue 4, 15 April 2024, Pages 1078–1079, https://doi.org/10.1093/cid/ciad661 Published: 27 October 2023 Article history

Views Cite Permissions Icon Permissions Share Icon Share

Extract

To the Editor—Recently, our article entitled “Efficacy of Cognitive-Behavioral Therapy Targeting Severe Fatigue Following Coronavirus Disease 2019: Results of a Randomized Controlled Trial” [1] was published in Clinical Infectious Diseases. This study demonstrated a beneficial effect of cognitive-behavioral therapy (CBT) in reducing severe fatigue following coronavirus disease 2019 (COVID-19), as compared with care as usual. All secondary outcomes also favored CBT. Positive effects were maintained up to 6 months post-treatment [1].

In this letter, we present the 1 year follow-up outcomes of CBT for post–COVID-19 fatigue. All details on the methods used in this follow-up study are described in the published study protocol [2] and the Supplementary Appendix. In this long-term follow-up study, all 57 patients randomized to CBT were eligible. Of them, 52 participated. For ethical reasons, patients randomized to care as usual were offered CBT and could therefore no longer serve as a control.

The primary outcome was fatigue severity. Secondary outcomes were physical functioning, problems with social functioning, somatic symptom severity, problems concentrating, and proportions of patients being no longer severely fatigued, no longer severely fatigued with a reliable change, and not chronically fatigued. Additionally, for each individual patient, it was calculated whether the change in fatigue severity between 6 months and 1 year post-CBT was reliable and/or clinically significant.

Issue Section: Correspondence
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This is torture. It's as if they want us to kill ourselves.
 
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The results were similar 1 year post CBT compared to 6 months post CBT. Unfortunately there was no longer a control group, the authors write: "For ethical reasons, patients randomized to care as usual were offered CBT and could therefore no longer serve as a control."

In previous CBT and GET studies such as PACE, FITNET, GETSET etc. the control group caught up with the intervention group at long-term follow up.
 
ME/CFS Skeptic said:
The results were similar 1 year post CBT compared to 6 months post CBT. Unfortunately there was no longer a control group, the authors write: "For ethical reasons, patients randomized to care as usual were offered CBT and could therefore no longer serve as a control."

In previous CBT and GET studies such as PACE, FITNET, GETSET etc. the control group caught up with the intervention group at long-term follow up.
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They're trying to use the excuse where a treatment that is found to be too effective to withhold from controls, even though it obviously did not meet this. Then they have no means to compare and simply declare it anyway, even though the outcomes are trivial at best in an excessively biased process. That's evidence-based medicine in a nutshell: nothing matters, nothing counts, certainly not what happens to the patients, everyone cheats so you better also cheat or you're a sucker. Pretty much all trials I can remember do this, it's standard practice and effective strategy precisely because no one cares what happens to us, so everyone involved is willing to cheat to achieve, well, nothing.
 
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