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."​

 

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

 

Reactie van de NVK (Nederlandse Vereniging voor Kindergeneeskunde)

 

Translated reaction from the NVK (Dutch Association for Pediatrics)

 

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

 

«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?




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:



Thanks for any help.

Moderation note: Please reply on this thread: National patterns of age of ME/CFS onset

 

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.

https://www.youtube.com/watch?v=9TNXoLyQ4HA

 

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.

 

Yeah, that was not his best description he gave. Normally he does a better job. Definitely something to work on.

 

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?