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Only accepts credit cards, which I don't have.

Yeah, I donate to the OMF too. There are individual projects that I might like better, but OMF for me was the easiest to donate to and also the easiest to get others to donate to. It's because they have several payment options and a large pool of scientists on their webpage. Also, I know some...

Looks good, was looking at their website and it looks like they're funding the right kind of projects too. Our fundraising has been abysmal for obvious reasons. Hope this helps.

The same people that did that shit to us have already snuck in the back door for LC. Even if they think the diseases are different, there's still something to be said for learning from us about how these people work.

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...

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...

Am not up to reading the entire thing, but the excerpt looks promising.

But he's their quarterback.... I'd have more faith in Tom Brady running studies tbh. At least he'd likely leave the science to the scientists.

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

Might just be different people within the RCGP? It's a pretty big organization, isn't it? The leaflet is a bit of a mixed bag, acknowledgement of PESE(I'd prefer PEM) is good. Admitting that you don't know much yet is good. The part about helping with breathing is unevidenced bollocks as far...

Me neither, but I like the idea behind it. I do feel they've just started somewhere and are still finding out what direction to move in. Hopefully this organization grows in a good way, I can see the potential benefits of working together.

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]

First tweet in thread: The relevant tweets: There was another tweet saying that in ZonMw's next newsletter there would be links to recordings.

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.

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.

None of them would get through the youtube swear-filter though.....

I don't know if Walitt does these things on purpose or not. I'm willing to believe that Koroshetz and Nath thought they were giving us what we needed, despite the blowback against the Shorter stuff and the appointment of Walitt. As you say I think it's very hard to backtrack once you've wasted...

Would've been preferable. The same with other initiatives like it that start on the wrong footing like ME Lines. It's incredibly frustrating to have people like Iwasaki, Wüst and lots of others move the field forward to then have people like Walitt and others trying to move it backwards again. I...

That isn't even a polite way of telling you to get lost :') .

Who dat?