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Trigger warning - euthanasia https://www.rtlnieuws.nl/nieuws/artikel/5425260/lauren-hoeve-vermoeidheidsziekte-me-cvs-euthanasie Hard hitting article about Lauren Hoeve. Lauren did well in getting across how horrible this disease is. I doubt she reads here but I hope she gets the peace she's...

Killing me softly would be apt too if it's the patients doing the singing.

Who's gonna do the singing. If it's the therapists might I suggest, "killing in the name of" by rage against the machine?

It's a very pervasive paradigm that needs to be weeded out root and stem from public perception. That'll take some doing as it's part and parcel in almost any discussion on not just disease but also on wealth inequality. Always have to fight harder or work harder and you'll make it.

No money in that if your only qualification is to make things sound sciencey.

Can't stand talking about people in terms of capital, but it's what's needed to make our case unfortunately. Not a slight on Putrino, who's working hard to get things done for us.

Alright, signed on.

Would be good. I've gotten the diagnosis ME but I've been calling it ME/CVS myself recently because (some) people know what that is. Chronisch vermoeidheidssyndroom(chronic fatigue syndrome) is a name that obviously elicits responses focusing on being tired. If that could be scrapped and we once...

I'd happily put in money for ME research in the Netherlands as it's one of the few things I can do. Wouldn't know where to start though.

It really doesn't have to, but it invariably does.

If you'd asked me at age 20 or 21 whether I'd had an infectious onset I would've flat-out said no. But the more I learn about the disease, the more I feel pieces are falling into place. Dr. Karl Morten in a recent talk hinted towards an infection at a very young age. My parents told me I was...

Alright, ty. In that sense unfalsifiable means that there can't even be an attempt to prove it wrong? Like me saying there's a planet that's out of range of all our measuring equipment or something like that? It's nice that I say that, but because it can't be measured it can't be proven true or...

Imagine that, going to a doctor and asking him to fix your disease. I can't imagine this "new" research is any better conducted than her previous work anyway. "Persistent physical complaints" in Dutch abbreviates to ALK which is our term for MUS btw.

What does falsification mean in the scientific sense? I only know it from falsifying ID's, money etc. It always struck me as odd to want to falsify a hypothesis.

Kuipers has been a thorn in the side of various patient groups including ours. The ZonMw program for ME/CFS looked like it was going somewhere until he got sworn in as minister of health. I think it's more about curbing spending for insurers and government and the BPS-crew are just a tool to do...

Doubt it, I think it just comes down to a difference in taste.

It's comedy, not a crusade. His style rubs a lot of people the wrong way, but at the end of the day it's not much more than jokes imo. With people like Gervais they often come at the expense of someone, but that's the style he's chosen. Have listened to a couple of his shows and actually enjoyed...

I think the foundation had scientists ready to respond to any funding rounds which has been a huge help in getting funding properly allocated. When ZonMW(Dutch government) allocated money for research in ME/CVS we didn't have that to the same degree, leading to Rosmalen taking a chunk of the...

Never been that bothered by the guy or his remarks tbh.

Could also be answer C: "problem we were too lazy to competently research also causes fatigue and depression."