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

Wait, so per their own website NKCV is an independent institution and treatment centre but it also outsources all treatment to Amsterdam UMC?

I really must be missing something.

 

This issue of bias and equipoise has been thoroughly destroyed, IMO. It only matters if people with influence within the system object, since it's political. There have been hints in the past, but none more blatant than when Richard Horton went on an international promotional tour framing the PACE researchers as independent and having taken a step back to objectively assess... the very thing they had made up and had been selling for years already. Even in politics it's rarely as nakedly corrupt as this.

PACE was the equivalent of a study by Theranos, using Theranos resources and employees being presented as an independent evaluation. With Theranos on the cover. And the manual for the study written by Elizabeth Holmes. This is banana republic level of not caring about the truth and just making stuff up. You can't have more blatant bias and conflict of interest than this.

Look at this horseshit. The lies. The lies!

 

That makes it a bit more complicated, I think. The conflict of interest would be more apparent if it were an independent business than if it's part of their responsibilities as university employees. Hm.

 

In Prins 2001, Table 1: Baseline characteristics of study participants, it is 3.9 so very similar

 

The director of NCKV is Prof. dr. Hans Knoop who outsources it to mental health or medical psychology at the UMC led by:
Prof. dr. Hans Knoop aka himself…

 

Thanks for pointing that out. I've made an error by only looking at some papers with results after treatment where the SD is often larger than at baseline. In this Long Covid trial it also increases from 3.7 to 12 (the figure they used for the power calculation). This increase in SD might point to ceiling effects, but that is a different matter.

Apologies for the confusion, will adjust my initial post.

 

Gaffney


https://twitter.com/user/status/1677517388424650760


Dogma and doctrine!

https://twitter.com/user/status/1677523824080723968

 

Thank you, but there’s no need to apologise.

The people who should apologise are the authors who should have used standard deviation and not standard error. By using the latter, they give the impression that they do not want people to see the spread of their participants.

 

Your years long crusade will harm patients even though this study I know nothing about doesn’t show that rehabilitative approaches will help patients.

I’m a serious scientist and definitely not opportunistically inserting myself in this debate for clout.

 

What does this even mean? Like I seriously don’t understand what he is talking about.

https://twitter.com/user/status/1677529617844912130

 

He’s either shamefully ignorant or plain dishonest. BPS is the natural outgrowth of a desire to cut costs and increase pressure on those receiving state benefits. That an ostensible progressive would defend this is nonsensical. This is what happens when you’ve convinced yourself that you’re a genius without really knowing anything.

 

Is he still blocking replies to various tweets relevant to ME/CFS patients? I know he did so previously, but I am no longer on Twitter and can’t determine whether it continues.

 

It's just the way he tries to distract from the fact that he's confidently expressing uninformed opinions on ME/CFS/LC and gets criticized for this by folks who know more about the topic.

 

Ive never seen him respond to a patient. We can’t enhance his profile.

 

Sidenote that sort of is more of a discussion about how (perhaps not with a legal case but we need to begin to show what they must either have seen or chosen to ignore) even with things like CBT it should be obvious that the coercive techniques + the particular condition they have chosen have made for a really significant 'recipe' in 'bias' (I'm not sure that is just what it is)

By which I mean we should be able to take people of different severities and pretty visibly show how their cognitive and physical fatigue shows itself, pretty visibly, in making said individuals obviously vulnerable in the space of a video.

Whether you are severe and that is after a few heavy duty questions or someone - a la 'CBT' - barracking you barrister-wise with questions and questioning your perspective or asking you to describe detailed things, or moderate and you get to do GET first and are just put into either needing desperate to not just sit down but get your head down and are therefore in an either wet rag tired or still obviously tired but almost seem hyper from trying to keep eyes open state.

THAT is when said people are told to fill in said questionnaires, which it might be worth, aren't well written to make sense re the condition, and aren't short or easy to use.

And you could show how easily pushed around to have words put in their mouth just to get out of the room these people are - even the most assertive of everyone, but when you have been made so ill that survival instinct and desperation will lead to it.

Further it would be worth noting the vulnerable situation people would/might perceive themselves to be at risk of should the person read their answers and not be happy with them - it seems more than feasible given the automatic accusation of 'didn't try hard enough' for those who didn't get better from harmful therapies that 'not giving the correct answer' to someone who could write to your GP and influence significantly care and other support mighn't be a risk you can take etc.

It is so worrying that such individuals are going anywhere near severe people. It really is such huge cognitive damage and psychological brainwashing harm that these individuals will be at what I would say are significantly at risk from significant harm from - given how exhausted their brains will be and these being 'pushed further' I find it ethically shocking and terrifying/disturbing.

 

Ty;

Kuut: “Scores on the fatigue severity subscale of the Checklist Individual Strength (CIS), range 8 to 56, with higher scores indicating more severe fatigue; a score of ≥ 35 indicates severe fatigue“

Your PNG: “Subsequently the four subscales are calculated by summing the respective items subscale 1: Subjective feeling of fatigue items 1, 4, 6, 9, 12, 14, 16, 20.”

 

Have a look at how ZonMW spells her last name, that pretty much sums up that study…

 

Knowing what it is before you check the file...

How embarrasing, it has been corrected though.

 

I'm still confused by it. A november 2021 PDF on ancillary activities of employees at AmsterdamUMC lists Knoop as chairman of the NKCV.

The organisation "AmsterdamUMC" was created in 2018 from the administrative merger of the two academic hospitals in Amsterdam: the AMC (connected to the University of Amsterdam) and the VUmc (connected to the Vrije Universiteit, Free University).

I found a quality charter of AMC psychiatry, which is a joint statute from the AMC department of psychiatry AND the NKCV, so while they are together and share the statute it is also presented as two entities. But it also says: "...the Dutch Knowledge Center for Chronic Fatigue (NKCV) is part of the care offered by the psychiatry department. The NKCV focuses on the treatment of chronic fatigue (somatic symptom disorder) within specialized mental health care."
(But then why name NKCV as a separate entity in the first paragraph, other subdepartments aren't mentioned there? Also of course note that treating "chronic fatigue" is treating "somatic symptom disorder".)

It has some info on NKCV.

So far it looks to me like Hans Knoop is a researcher at the department of medical psychology of the AMC (not an active HCW, and e.g Kuut is listed as researcher at the medical psychology dept of the VUmc, so the other hospital, but they are both part of the NKCV team), and the NKCV is an independent institute and treatment centre, chaired by a researcher at the AMC medical psychology department, that gets hired by (or outsources to?) the AMC department of psychiatry for treatment.

So far it doesn't look like a simple construction to me. The psychiatry department & NKCV quality charter states that NKCV is located at the AMC location, but the NKCV site itself states that its visiting address is the outpatient clinic of the VUmc.

I also found a newsletter of the UMC Medical Psychology of december 2021 that Kuut wrote an article for. She mentions ReCOVer and the research agenda Knoop wrote with Wessely and Moss-Morris. About the NKCV she says:

"It is still relatively unknown that a psychologist, in particular a cognitive behavioral therapist, can also be used for physical complaints such as long COVID, persistent fatigue and cognitive problems. A specialized treatment center for long-term fatigue, the NKCV, also sees relatively few patients with long-term fatigue complaints after COVID. This is remarkable given the large numbers of patients with COVID, and the expectation that a significant proportion of these patients will have persistent complaints. Factors that may contribute to this is the reluctance of doctors to refer to a psychologist for long COVID. In addition, patients may worry that the persistent complaints mean that unknown damage has occurred to the body." (bolding mine, "lung covid" corrected to long covid)


I'm doing too poorly to pursue it further, and cognitive issues make it difficult atm. Maybe another time.



(Attached:
- Quality Charter AMC psychiatry department and the NKCV, auto-english translation,
- QC AMC psych. dept. and the NKCV original,
- UMC Medical psychology newsletter december 2021, auto-english translation.)