News from The Netherlands

Another article in the NL Times: Dutch doctors using questionable treatment on kids with chronic fatigue syndrome

It's written in English:

"Patient organizations PostCovidNL and LongCovidNederland told NOS that they can’t believe this treatment is still used on children with ME/CFS. Most Long Covid patients also have post-exertional malaise, and some received behavioral therapy early in the pandemic. "The stories of patients who have experienced this are harrowing," Diewke de Haen, director of PostCovidNL, told the broadcaster. That is why the therapy is not used in the recently established Long Covid expertise centers.

According to NOS, pediatricians are also involved in the Long Covid expertise centers. The Dutch Association for Pediatrics did not answer the broadcaster’s questions on why the treatment is okay for children with ME/CFS, but not for people with the similar Long Covid."​
 
Chestnut tree said:
Sympathetic article on Dutch public news site NOS.

Therapy for children with exhaustion disease ME/cvs questioned.

Dutch version

https://nos.nl/artikel/2569260-ther...uitputtingsziekte-me-cvs-in-twijfel-getrokken

English version
https://nos-nl.translate.goog/artik...=nl&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp
Click to expand...
Second article by the NOS (public news network)
Ouders kinderen met uitputtingsziekte MEcvs botsen met artsen over therapie.

Dutch version
https://nos.nl/l/2569354

Translation;’Parents of childeren with exhaustion disease MEcfs clash with drs over therapy’

English version
https://nos-nl.translate.goog/artik...=nl&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp
 
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Dolphin said:
The Dutch Association of Pediatricians website comment:
(Google translation from Dutch to English)

https://www-nvk-nl.translate.goog/n...r-me-cvs/?_x_tr_sl=nl&_x_tr_tl=en&_x_tr_hl=en
Click to expand...
Yes, the current guideline for CFS/ME in children is up to date. Several studies have shown that cognitive behavioural therapy (CBT) is an effective treatment for more than half of children with CFS/ME. These studies closely monitored whether there was any deterioration, and this was not established in children who received CBT. That is why we believe it is important that CBT remains available as a treatment option.
Click to expand...
Guidelines are regularly adjusted based on new scientific insights. If there are new scientific insights that benefit care, the guidelines are adjusted. This happens continuously. The current guideline for CFS/ME in children is still up to date.
Click to expand...
«CBT is effective because the guideline says so.»
And when the guideline is eventually replaced, they will complain that the new one is bias and wrong.

And they obviously ignored MAGENTA and the serious flaws with the studies..
 
I'm hoping this is a good place to ask about diagnosis practices in the Netherlands.

Along with Audrey Ryback (a researcher at Edinburgh in Chris Ponting's group) and @chillier, I'm using results from the 2021 EMEA survey to examine data on the age at illness onset for ME/CFS.

One striking feature of the data is that the Netherlands alone shows a young age peak (10-20 in this EMEA graph, though we are analysing the data in more detail).

Does anyone know why the Netherlands should be different from every other country?


upload_2025-5-31_17-55-10.png

By contrast, this is the pattern for the whole sample, though the pattern is influenced by results for Norway, which provides the most responses and is the only individual country with a clear pattern of two peaks:

upload_2025-5-31_18-18-40.png

Thanks for any help.

Moderation note: Please reply on this thread: National patterns of age of ME/CFS onset
 
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Grigor said:
8 pm news about the treatment and at times coercion of CBT/GET in kids. Lead story which was quite something really. I added English subtitles.

Click to expand...

Overall good coverage. Thank you for sharing with subs!

Wüst says that ME is best described as «extreme fatigue» with symptoms that worsen as well. He also talks about muscle abnormalities after exertion.

One mother talks about how they were reported to the child services for refusing to push their daughter through GET.
 
A longer article in the Dutch newspaper De Telegraaf about a documentary maker, Jessica Villerius.

She has longcovid and is undergoing a treatment that is not scientifically supported yet. Therefore she is not sharing what the treatment is.

She is doing better now and has been able to resume work mostly.

In Dutch
https://archive.ph/nS58N

Have not been able to translate. Maybe because this is a paywalled article?
 
Alinda said:
https://www.vgct.nl/reactie-vgct-op...JKFcRWAgCn4E2ht1wQ_aem_eOL0xe8TkMyCG67U3WrSiQ

Reaction to the article in the NOS from the "Association for Behavioural and Cognitive Therapies"
Click to expand...
Yet again, the people that claim to be experts on the human mind, are completely clueless about how their own minds have led them astray.

It’s almost like psychology is a breeding ground for some kind of psychosocial disorder where the afflicted harbour unhelpful beliefs about themselves and their capabilities. They also appear to exhibit a lowered scientific rigour preference that hinders they recovery.
 
Their goal was to “take critical voices seriously and eliminate misunderstandings about CBT.”

Yeah, that is the problem, our misunderstandings. It is all our fault.

I do not believe for a second these people are that stupid or ignorant. They do not have that excuse. They know what they are doing.
 
The whole article just doesn't make any sense to me.

I can somewhat see how CBT can mean different things to different people, but by reacting like this the only thing they seem to try is to avoid taking any kind of responsibility & change. Just like the other reaction from the pediatricians.

Just gross. No need to respond if the only point is to dismiss an experience many people seem to have had.


It's good that they are even mentioning PEM though, I suppose that's a step. Now someone needs to explain that the speed of adding activities doesn't have (much) of an effect on PEM..

I will say that their picture of CBT in me/cfs doesn't sound as horrible as it was in my experience. I still wish they would acknowledge that not all clinicians use an approach like what they explain. This certainly isn't how *my* experience could even be explained as! Refusing to acknowledge this, just feels more dismissive. It seems so obvious to me, that different psychologists are going to have different ways of treating and usage of CBT, especially if its a mixture of completely different views on me/cfs!
 
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