Protocol ReCOVer: A RCT testing the efficacy of CBT for preventing chronic post-infectious fatigue among patients diagnosed with COVID-19.

Here's an archived version of the trial website, in case it gets deleted when the results are published: Moe na COVID-19? | Doe mee aan de ReCOVer studie (archive.org)

 

Results WOB procedure grant award by ZonMw to ReCOVer research
(Internet Cognitive Behavioral Therapy) in patients with long COVID (ReCOver).

"The British NICE has determined that the quality of the scientific evidence for this treatment is low to very low.

It is also clear from Dutch and foreign empirical studies that this form of CBT does not help the majority of patients and that it leads to deterioration in some.

We would like to prevent this, also for long COVID patients."

The answers by Hans Knoop are quite something...

English version here:

 

No treatment protocol available because "The treatment must first be tested in research."

Where to begin with that one?

(For starters he stated that it definitely would work and that it was just a matter of timing on the recruitment page: "We already know that chronic fatigue can succesfully be treated with cognitive behaviour therapy. We wonder if cognitive behaviour therapy can also help prevent that fatigue after COVID-19 becomes chronic.")


I really need to do some other stuff first, but will come back to read the rest for more horrortainment later.


Good you are going after this @Grigor

 

Merged thread

ICBT for longcovid 308.000 euro grant

https://corsius-wordpress-com.cdn.a...grant-award-by-zonmw-to-recover-research/amp/

 

Medicine is genuinely in a state of crisis. This is like NASA calling a flat Earth study proposal with the same qualifiers. Beyond absurd.

 

English translation of the conversation:

The ReCOVer research, CBT/GET for longCOVD patients has received a 308.000 euro grant awarded by ZonMw.
we submitted a WOB (FOI) request. https://t.co/IL5vvJc7CF

 

What was unsaid is perhaps more interesting. (the fact that they haven't found improvement on actimetry in other patient groups).

 

I haven't read the above so this is speculation---

[Knoop] "The actometer is only used to monitor patients prior to treatment divide into an active group and a less active group."
Incredible seems reasonable. Actimetry is OK to select participants, but it's not OK to measure the outcome --- seems illogical.

Surely the more obvious answer is Knoop doesn't use actimetry, as an outcome indicator, because it indicates the intervention doesn't work. As others have pointed out on this site, these folks [Knoop, Garner ---] know their interventions work, so the actimetry measurements must be unreliable - since it doesn't confirm improvement!

These folks shouldn't receive a cent of public [taxpayers] money for their shoddy work. This crap should be relegated to nonsense individuals are free to believe/not believe but have no place in public decisions - like publicly funded health care.

 

Post it all over social media and tag them - that way they may have to respond i.e. to defend their reputation.

 

@dave30th wrote in his blog that they do but not at 6 months follow up. I heard the same from patients who participated in the trial and did have the actigraph at the end of the treatment as well.

https://www.virology.ws/2022/01/07/...long-covid-patients/?utm_source=pocket_mylist

 

I pretty assume it's the PACE strategy: if good, they publish and boast like it's a magical cure, if not good they will simply bury and pretend they didn't even do it. It worked for PACE, no reason why this successful formula wouldn't get used again and again.

No oversight means anything goes, this isn't something that happens every now and then, it's the plain formula for the entire field.

 

Trial By Error: More on the Dutch CBT Long Covid Trial; Finnish Study of “Amygdala Retraining” Program

"I have written a couple of times about a Dutch trial of internet-delivered cognitive behavior therapy to prevent severe fatigue in long Covid patients. The goal is to address factors like “dysfunctional beliefs about fatigue,” “perceived low social support, “problems with processing the acute phase of COVID-19, and “fears and worries regarding COVID-19″ that are purportedly driving the prolonged symptoms. My posts—here and here–were not favorably disposed toward the research and suggested the design was biased toward producing positive results.

Last month, advocates from three Dutch patient organizations published their own report about the study. The researchers, from the Dutch Knowledge Center for Chronic Fatigue (NKCV), were awarded €308,000 by ZonMw, a major independent health care funding agency. The lead investigator, psychologist Hans Knoop, is a well-known proponent of the CBT/GET treatment paradigm for ME/CFS. In 2011, he and a Dutch colleague wrote a commentary for The Lancet that accompanied the PACE trial and declared that participants had met “a strict criterion of recovery”—a demonstrably untrue statement."

https://www.virology.ws/2022/02/04/...finnish-study-of-amygdala-retraining-program/

 

Dr Tuller's (excellent) blog highlights one of the points Knoop made:

Not new. This argument was also made by RCPsych in their responses to the NICE consultation (p1035 of the first comments table), where they say that "the general direction of travel is more in the opposite direction" - i.e. away from objective outcome measures and towards greater adoption of PROMs.

In some other areas of medicine there has also been a push towards greater use of PROMs, especially with diseases where there is only a weak correlation between the currently available objective measurements of disease and functional status (e.g. in MS, the correlation between radiological assessment of demyelinating lesions and patients' self-report of impairment is quite weak).

 

She gave me this answer. She didn't want her case to be recognizable. Still an interesting to read. CC: @dave30th

 

I'm confused what this is in reference to? participant in what trial?

 

How do they even verify that you actually did a walk as opposed to just saying you did a walk?