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.

 

That is peculiar. Thank you for asking.

Do you have a link to the source?

Or do you know where the Dutch figures where sourced from?

 

Do we know how the data were gathered? There are all sorts of reasons why it might be skewed, clearly.

 

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.

 

Apologies, I had left out the link to the EMEA survey. https://www.euro-me.org/emea-pan-european-survey-uk.shtml

Yes, the survey was promoted by European national ME organisations. As such, it is only likely to be seen by those with a diagnosis; those without are unlikely to be covered.

However, the data for Norway is remarkably similar to the two national patient registry studies from the county (Bakken and Hilland). We have also found common features across many countries that have surprised us, suggesting that the data captures a true underlying feature. Though we haven't been able to explain most of the differences between countries using data in the study. We believe many of the differences are due to diagnostic practices and are posting here to find out whether people who know the situation can throw any light on this.

Regardless of the study's biases, are there any reasons to think the Netherlands would show different onset age patterns than other countries? Given that those who are not diagnosed are unlikely to feature in the survey.

Its strength is that it captures onset age, is large (11k), and an identical survey went out across many countries.

 

I would not know.

I am thinking what is happening in this age group in the Netherlands what is different from other countries. For instance different health policies, more infectious disease?

I also wonder if this is the bias from the sample. I am not sure if many people are members of patient organisations in the Netherlands.

And maybe only people were reached that are on social media. Could it be that mainly younger patients were reached because of that?

But again only guesses.

 

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?

 

Thanks for the reply.

Yes, that's the sort of thing we were wondering. We haven't seen a different trigger pattern in the Netherlands (such as more or fewer infections).

I should have mentioned that surveys were primarily distributed on social media across Europe.

The response in the Netherlands, relative to its population size, was the highest of all non-Nordic countries, which is unlikely to explain this exceptional pattern.

The mystery seems to remain. Is there a lot of emphasis on pediatric cases in the Netherlands?

 

There is the group of Sanne Nijhof and Elise van de Putte who developed FITNET, an online and quite assertive form of CBT. It aims at full recovery, includes graded activity and is similar to the CBT version of Bleijenberg and Knoop. Their team works at the WKZ in Utrecht which is probably the most prominent paediatric clinic in the Netherlands. So they have a lot of influence. Their RCT of FITNET was published in the Lancet.

One hypothesis would be that a lot of pediatric ME/CFS patients in the Netherlands got diagnosed and treated by this group, got worse because of it, and are more likely to become member or follower of patient organisations (because of anger about the mistreatment that they got). This is a bit of a long shot though. I think it's unlikely that this would affect the survey in such a big way.

 

Thanks. It is interesting, even if because it doesn't seem to explain the data.

 

I don't know but in theory the following scenario is possible:

Suppose that there existed an online forum for young ME/CFS patients in the Netherlands. It may only take a single influential and dedicated individual that promotes the survey in this group to skew the data towards a young age of onset.

This scenario would also be consistent with the unusually high survey participation rate that you mentioned.

 

I have the same hypothesis because of Wyller and Landmark in Norway. LP has been around for almost twenty years here, and there are many doctors (both GPs and at hospitals), especially in the eastern region around Oslo, that actively recommend LP. And Wyller is a pediatrician that very actively recommend GET, and he and his friends have done a lot of «teaching» of other practitioners.