Dutch journalist asks about pwME's objection to CBT/GET

MSEsperanza

MSEsperanza

Senior Member (Voting Rights)
"bumf" - a document, or collection of, or building full of, documents/paperwork which may, or may not, have relevance, that consequently few people like to read - preferring instead for someone else to do it it and deliver them a short summary.

Just my understanding of the term, other opinions may be available upon request.
 
Wonko said:
"bumf" - a document, or collection of, or building full of, documents/paperwork which may, or may not, have relevance, that consequently few people like to read - preferring instead for someone else to do it it and deliver them a short summary.

Just my understanding of the term, other opinions may be available upon request.
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That’s the polite version - it’s short for bum fodder ie toilet paper. In the olden days people used any old waste paper including newspaper
 
Just realized that this is a ongoing series of the dutch online journal "de monitor":

https://demonitor.kro-ncrv.nl/artik...ek-naar-mecvs-door-familieleden-van-patienten


twitter comments:




from the google translation:

Prejudices

Also professor of medical philosophy and ethics at Amsterdam UMC Guy Widdershoven thinks it is an interesting issue, and concludes that it does not matter for participating in a debate whether you are a patient yourself, or whether you have a family member who is. An interest in the subject and belief in a particular solution direction can be productive. But that is only part of the story. Bias, or prejudice, must be limited, according to Widdershoven.

He explains that it is precisely in the field of cognitive behavioral therapy that it has been investigated how bad it is when researchers believe in the therapy they have practiced and researched. 'That can be a bias that influences your objective view. It turns out that the bias exists but does not have to be a problem. It is good if you are interested in a problem and are motivated to find the solution in a certain direction. That is the vanguard that comes up with new scientific research. If you are negative and only interested in proving that something is not working, we will not get further into science, and you will not think up any potentially new creative solutions. '
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Involvement

Widdershoven sees involvement as an essential part of the start of scientific research. There must be something to follow. After that, more critical researchers, who are not so connected to the studied subject, have to review, repeat and improve or refute research. Then you will gain knowledge that you can trust, which has been tested outside your own circle. 'You have to create those moments in order to neutralize the bias that often occurs in the first phase.'

Widdershoven, however, draws a line on researchers who are already in advance against a completely opposite bias. 'You can not reinforce your research with only the ability to precipitate. A critical attitude is something other than being rigorous and looking for the confrontation.
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Stomach ulcer

That there are two visions, two paradigms, is more common in science. "Widdershoven cites the approach to stomach ulcers as an example. In the 70s, treatment with psychotherapy was considered appropriate because it would be stressful. Until someone discovered that a bacterium survived in the stomach that caused the ulcer. That meant a change from psychological to biological thinking. It led to a new preferential treatment. But psychotherapy has not been dismissed altogether because it did prove to help people. 'Camps can both have a point. It is especially important that in such a situation both ideas are further developed and tested by research of both people who believe in the solution and more distant researchers. '
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The article mentions Ron Davis, Keith Geraghty, Lou Corsius, @Mark Vink (or Marc Vink?), @dave30th , among others. BTW, I think the author got the details about @dave30th's connection to ME a bit wrong.

Not able to write more ATM

eta: online "journal" is not the right term, it is a website connected to KRO_NCRV: https://en.wikipedia.org/wiki/KRO-NCRV
 
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That looks pretty bad, and I get a sense that it's going to get worse. Really seems that they've not done any substantial digging into the evidence, and are instead doing a fun story of science vs patient activists.

It's important that patients are cautious and rigorous in the claims they make, to make this misleading narrative difficult to spin... but Knoop seems to get away with bullshit like his 'strict criterion for recovery' PACE claim, with "the recovery rate of cognitive behaviour therapy and graded exercise therapy was about 30%". https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60172-4/fulltext

Any journalist that cites him as a CFS expert and fails to mention this spin is difficult to take seriously.
 
Esther12 said:
That looks pretty bad, and I get a sense that it's going to get worse. Really seems that they've not done any substantial digging into the evidence, and are instead doing a fun story of science vs patient activists.
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It got pretty bad already. Sorry, am not able to give a synopsis, but this Dutch series shortly after the Netflix debacle should alert us to seemingly sympathetic journalists.
 
Oh wow - this series really is appalling.

Here they have Knoop batting away softball questions which are presented as "the most important ten points of criticism of the treatment".

Did they find a patient foolish enough to list these things as the ten most important points of criticism, or is this just propaganda? Even on the 'recovery' spin, which is important, it's a very soft question and there's no follow-up to Knoop's responses. He's just presented as the expert giving the final word. Pretty shameful stuff.

https://translate.google.co.uk/translate?sl=auto&tl=en&js=y&prev=_t&hl=en&ie=UTF-8&u=https://demonitor.kro-ncrv.nl/artikelen/je-eindigt-niet-in-een-rolstoel-door-gedragstherapie&edit-text=&act=url
 
Only slowly I am getting an idea of the structure of "de Monitor":

(About "de Monitor": https://demonitor.kro-ncrv.nl/over-de-monitor )

It appears to be a website gathering public input on controversial topics journalists want to investigate and eventually make a film series about. During the process of collecting experiences from the public, they publish articles on the topic (and it seems to me they have the illusion that the truth is to be found just somewehre in the middle of the opposing experiences and information, but I am happy to be proved wrong). Based on both collecting and publishing the collected experiences and information they eventually produce a film series.

If I understood correctly, the fim series about "Chronically Tired" ( https://demonitor.kro-ncrv.nl/deel-jouw-verhaal/chronisch-vermoeid ) will be broadcasted starting on September 4th. It seems still possible to provide experiences and information: https://demonitor.kro-ncrv.nl/deel-jouw-verhaal/chronisch-vermoeid

Apologies for giving such fragmented and confusing information. Perhaps I better should trust in our Dutch speaking members, but I am really concerned about the pieces published the last days and how the ME series' structure has been developed so far.

[ETA: who would like to help me with grammar and wording: the ME series' structure has been developing/ developed? evolving? ...? :confused: ]
 
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Carolyn Wilshire replied to De Monitor on Twitter via @Grigor:
As a psychologist, I don't think the evidence supporting CBT and GET in MECFS is sufficiently strong to support the recommendation. Also, in the case of GET, there are frequent reports of harms. Can't imagine any other context where such reports would be so wilfully ignored.
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Thank you, @Carolyn Wilshire and @Grigor !
 
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So they have exposed now the ME sufferer who "gave the direction to their investigation" - as I expected, really very bad:

De Monitor:
"What strikes me about his mails is that he is one of the few who still tries to listen to all parties in the discussion. These parties are roughly divided into two camps: The patient associations, which argue for a biomedical or physical approach to the disease, and the Netherlands Expertise Center for Chronic Fatigue (NKCV) of psychologist Hans Knoop, which has a psychological approach with cognitive behavioral therapy (CBT)."
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google translation:
https://translate.google.com/transl...-tijd-lig-ik-helaas-in-bed&edit-text=&act=url

https://demonitor.kro-ncrv.nl/artik...min-het-gros-van-de-tijd-lig-ik-helaas-in-bed
 
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I'm not surprised that journalists who were new to the topic would find appealing a patient who was new to the topic and seemed 'open minded'. Unfortunately, this sort of guide is unlikely to be able to dig into all of the details of the evidence in the way that is needed.

I get the impression that in this coverage we're again seeing the whole psychological vs physical thing works against patients - it's a pointless distraction, and part of a simplistic narrative that many journalists seem to find appealing, but just leads to people rambling on about the need to develop a sophisticated understanding of how mind and body interact.

Journalists are generally not going to be interested in understanding the complicated legal and financial reasons that classing a health problem as 'psychological' can be problematic. They're more likely to want to virtue signal over their own attitudes toward mental health problems. Whenever debates about ME/CFS are presented in the terms of whether ME/CFS is physical/mental/whatever it seems to make it more difficult for us to get our substantial and legitimate concerns listened to and understood.
 
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