National patterns of age of ME/CFS onset

Copied from the News from The Netherlands thread

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.

 

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.

 

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.

 

You posted about age of onset. I was wondering if you have data on actual age at the time of the survey and if the cohort from the Netherlands was younger than that of other countries?

 

Im young, and in my experience all doctors seem to think "cvs" is just chronic fatigue. As a result many are send to go GET/CBT. I think the current guidelines from GPs and pediatricians also considers CVS to be part of SOLK (somatic symptom disorder), and don't have any mention of PEM anywhere.
I have also heard that doctors in the netherlands do a less thorough diagnostic process as most other countries, but I dont have anything to compare to myself. It could be possible a bigger percentage is misdiagnosed.

I went to the pediatrician in WKZ and they used very strange diagnostic criteria, without consideration of PEM at all. I can definitely see how a lot of children with auto immune diseases or other similar diseases might be misdiagnosed. And the ones that DO have me/cfs are almost guaranteed to be mistreated and worsen -> more likely to be more involved in research. I think a lot of dutch texts related to me/cfs also note that its most frequently observed in adolescents.

All anecdotal obviously, but it makes sense intuitively to me that its overdiagnosed in my age group & more frequent mistreated.


Edit: I dont think there is a proper alternative diagnosis for just idiopathic fatigue as well, so its all thrown into the same bucket. I can also think of a lot more reasons, like the problems with mental health services.

 

Thanks for the insights.

that’s interesting.

 

Good question – we have the information and will check ( from memory, countries were pretty similar, but my memory isn’t so good).

 

Thanks. That’s possible, though the participation rate was lower than for the Nordic countries, and my understanding is that The survey was promoted by the main ME organisation. I’m guessing If this happened, we might see it in the age survey, Which we will look at, as above.

 

I used te follow the news from the main ME organisation. Stopped and went on to other channels.
Probably the more recent patients are following the main ME organisation more frequently.
Being older I would not be so keen on participating anyway. 99.99% of GP's and specialists are ME/CFS deniers.
I still have to meet one with knowledge, apart from the researchers obviously.

 

Yep, mean age at time of filling out is very similar but that doesn't mean the underlying distribution has to look the same so we can check. Since we have the age of onset and the age at the time of filling out the form it means we could also check how the age at onset has changed over the years, which could be informative.

 

There really seems to be a pattern for this: the more psychobehavioral, the more organized the patients are.

I don't have many examples to work with here, of countries where some health care systems implemented this model, but it seems to roughly follow the same trend.

Which, when you think of it, is expected. More discrimination leads to more reaction to it.

There's also another trend, where countries that have adopted this model do not do any better than health care systems that do nothing, but since outcomes don't really matter to this model, no one involved seems to care. They do care about advocacy in response to it, but they appear to be the main cause of it.

 

Hi Alinda,

I am sorry that you had to undergo this treatment. Is is cruel for any ME patient, but especially for children/adolescents.

Thank you for speaking out. I hope the media attention will lead to better treatment of ME patients, especially children and young adults.

You speak of very strange criteria, could it have been Oxford or Fukuda criteria, that do not require PEM?

 

It is quite cruel, I agree. Especially the younger you are the more difficult it is to stop a treatment and advocate for yourself against doctors that only dismiss your experience.

I suspect it was a edited fukuda, that didn't mention PEM at all (the normal fukuda does at least include PEM, just not required. I think at least?). I clearly remember there not being any mention of PEM and it including muscle/join pain & swollen lympnodes.