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It's so weird to now read decent to good articles about ME for what feels every week now. And the quality seems to keep increasing as word gets out.

I hope the way that the biomedical LC-researchers have positioned themselves now ensures that we won't have a repeat of the ME Lines-scandal earlier this year. The consortia/research teams are already there, you only have to send them the funds. Our government is supposed to make 32 million...

More than a bit imo. Patients should in any case be treated with respect, but also if you find a patient difficult to deal with because there isn't an easy way to diagnose them, don't make it the patients problem. Make it the problem of scientists, medical universities, governments etc. whose...

Interesting to see that the only university in NL that's put money in is the one that hosts the dreadful NKCV(Knowledge center chronic fatigue) that hosts Hans Knoop, Tanja Kuut etc. Edit for clarification it's the AUMC that's put in 100-500 thousand GBP.

I've been thinking about who we're talking too in a lot of instances. In NL we have the Rosmalen/ZonMw debacle, but nobody is talking about how the university hospital of Groningen is making a mess of things by having her run things. I think certain people are beyond shame and others operate...

I think there are already LC researchers that have taken the opportunity to start studying other diseases like ME/CFS too. From the Netherlands I know the team Rob Wüst is working with has been collecting samples of ME/CFS patients because they want to study us in unison with LC patients. I...

Anyone willing to graciously offer their expertise for free? With a panel of knowledgeable patients you could probably hammer this thing out in a matter of weeks. Or just, you know, copy from NICE.

I'm gonna give this a rest for the time being. I think there have been a lot of very helpful commentaries on this thread, but it's also made me realize that this is too big a project for me to take on in my current state. I still think it's a worthwhile thing to lay out just how much overlap...

Sounds more religious than anything else. Them good ol' Chalderiaan values.

Haven't read it, but is the conclusion that they're both wrong?

Wanted to go back to this one last time. What stands out if you look at ME Research it's almost always done by someone that knows our disease and has seen how the past 10/20/30 years or so have played out. Others will have been made aware of what's happened to us. If you look at different...

This also speaks further to how much of a(deliberate?) fuck up it was from ZonMw to sideline patients the way they did. Rosmalen gets access to people like Cindy Boer, while we get to respond from afar. That's a tweet from Wüst on 5 October btw. Pretorius talking about research Wüst's team...

To be fair to him, he actually does good work. I think there's a vid in this thread somewhere or in one of the LC-topics that features him amongst others and he shows how long-haulers have an abnormal response to exercise and how it isn't wise to have these people exercising. His research on LC...

Had come across it on bluesky, signed and shared.

Sometimes it's better to acknowledge a mistake than to cover it up with such a transparent attempt to deflect blame.

Nice to be able to hold up shiny plaques to district from the pile of crap behind you I guess.

Rosmalen hedging her bets for when she gets booted out of her position as a lead on the "biomedical" ME Lines project?

Can imagine a number of those scientists not fully grasping what they're being roped into by leading BPS figures. I reckon the people on the ME Lines project probably thought they'd be doing important work for example. Cindy Boer(geneticist) seemed open to input on twitter but went schtum...

Depends on who's brain you plan on taking :D .

Only know Knoop out of those. From a quick google I found that their areas of expertise seem to be: Michele van Vugt: On her Dutch page it says she trains students in infectious diseases. Brent Appelman: Jeroen den Dunnen: Merel Hellemons seems to work at Erasmus MC on lung...