The Netherlands - €28.5 million ME/CFS research program - ZonMW funding awards announced April 2023

Turns out it is a twin study and was posted here by Chris Ponting in 2019
https://www.s4me.info/threads/repur...ns-in-560-phenotypes-2019-lakhani-et-al.7675/

I probably commented it on it at the time, but don’t have the energy to look now! And I agree the estimate does looks very high

 

Is there anywhere I can read more about it? Rosmalen has sufficiently muddied the waters to make it hard to find out what is what. If they've already got a new database up and running they've done that in a very short time it seems.

 

It says this is the project that is set up with the help of "patient organization" ME/CVS Stichting Nederland. I trust that organization about as far as I can throw it.

 

https://twitter.com/user/status/1780240624853143820


First tweet in thread:

The relevant tweets:

There was another tweet saying that in ZonMw's next newsletter there would be links to recordings.

 

Note that this post has been moved. The thread with the post referred to is
Genetic Risk Factors of ME/CFS: A Critical Review. Joshua J Dibble, Simon J McGrath, Chris P Ponting. 2020

It is on Zonmw for a new round of susidies. Please go to the original @SimonM an Chris Pointing research on the first page of this thread.
Lifelines has to clean up it's own act before they can become relevant again. Note; Lifelines is in the north of the Netherlands. The province of Groningen. My parents, when still alive, were part of it. Now

Please don't put your energy in Lifelines. It is riddled with problems. People get diagnosed with illnesses they don't have (according to a local healthcare worker). They diagnosed people with ME/CFS who didn't know they had it. Does anyone believe that on s4me? The percentage mentioned is because of a new round of grants from Zonmw, government. It's just an add.

Please poit your attention to page 1 of this thread. Simon M and Chris Pointing, their research deserves it.

 

Was just trying to figure out what's what. Got confused. If I understand correctly Cindy Boer will now start a project akin to the work of DecodeME. If so that would be huge. I'll try to flag my posts about ME/CVS Lifelines for mods to move/remove.
[Posts have been moved]

 

Here's an English translation of what she said in Dutch during the webinar.

Martje Bos: "We conducted research in Lifelines. That's a population cohort in the northern provinces of the Netherlands where, among other things, the symptoms of ME/CFS are enquired. So it asks: do you suffer from fatigue, for longer than 6 months, and all the additional symptoms ... And based on that we can see if they meet the diagnostic criteria. And there are also a lot of family members in Lifelines. And based on that, we've been able to see: are people who have a family member with ME/CFS ...euh also more often euh.... themselves that they have ME/CFS. Based on that we were able to calculate the heritability and then we come up with 43%."

Presenter: "Oh wow that's pretty big."

Martje Bos: "Yes that's pretty high. We are about sure it is between 34 and 51% and many previous studies on the heritability of ME/CFS those had much wider certainty intervals. Then it went, for example, from 3%, barely heritable, to 97% which is extremely heritable. But so we have a much narrower certainty interval. And we also did that according to the official diagnostic criteria instead of just asking, 'have you been tired for more than 6 months' or, 'do you have some additional symptoms'. So this is a good approach to the heredity of ME/CFS."

 

During the Webinar Rosmalen also answered to the question how Lifelines determines if someone has ME/CFS or not. This is a quickly translated transcript:

Presenter: How are people in Lifelines determined to actually have ME/CFS?

Rosmalen: As Sonja said, we start with a questionnaire and we then see if people have the symptoms that fit the various diagnostic criteria that one can use to diagnose ME/CFS. But of course you can't tell from a questionnaire alone whether someone has ME/CFS. People who participate in lifelines also come to our research facilities and then they get a whole series of tests such as, for example, a lung function test, an ECG, a cognition test, a blood pressure measurement. A whole series of tests actually that they undergo. And we then also collect blood and urine. And we do that not only to determine all those beautiful metabolic products and proteins and so on but also to see if there might be diseases well that could explain the symptoms that people are experiencing.

So for example, we look at: is the liver function okay, is the kidney function okay, is the thyroid working okay. And only after medical specialists have checked all these tests and looked at: are there any reasons, are there any chronic diseases present that could possibly explain the complaints that people have indicated on the questionnaire. Only when medical specialists from all those disciplines have said: well that is not the case here, only then do we say that this is ME/CFS. So people actually get quite a lot of tests, I think perhaps more than the average ME/CFS patient who gets diagnosed in the health care system because the diagnostic services they are offered are often limited.

 

The webinar itself is available here:
https://www.zonmw.nl/nl/nieuws/terugblik-webinar-over-onderzoek-naar-mecvs

 

Thanks, will watch later. 75 mins is a bit much right now.

 

Martje Bos doesn't mention PEM specifically, but she says the official selection criteria were used. At least for as far as I've listened now, might amend later.

The program does start out with mentioning PEM almost ad nauseam, so that's a good sign.

Cindy Boer talks about a new consortium she's leading, the GEM consortium, GEM stands for genetic epidemiology of ME/CFS. It's supposed to have a data-set of 30.000 people with ME/CFS and several 100 thousand of people that don't have ME/CFS. How they were recruited isn't clear to me. Can't find the consortium online.

 

Looked more like an infomercial for ME/CVS Lines, ZonMw and ME CVS Nederland tbh. I don't know what cohort Cindy Boer is using but I'm skeptical. They didn't go into detail about what criteria they used for what. Rosmalen waffled a bit about questionnaires not being enough so they'd draw blood and all that good stuff.

I'm not gonna say I'm underwhelmed because I had to be properly whelmed when starting. I'm simply not impressed.

The 4.4 million to replace the money pissed away on the ME/CVS Lines project was portrayed as additional funding. I think they said It'd go into their existing programs, but until I get the transcript to properly work I won't be able to check.

Clinics for LC would open soon. Another round of funding would open up 17th of June, people can apply at that time.