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Karl Lauterbach a German government member is talking about Long Covid. Seems to really have a handle on the problems people with LC are facing. Also mentions ME/CFS I think, but not sure anymore. He talks quickly and for 7 minutes so I'm having trouble processing it all. He says he put LC on...

Hitting up the dairy isle at the supermarket this afternoon!

Interesting that he mentions 6 months for the trial, then apparently a follow-up at 12 months. I think the idea for filgotinib was also to administer it for 6 months.

It's exactly the same message as the BPS-crowd, but coming from someone that's trying out some supplements to see what sticks. Just as unethical coming from her as it is from them.

Talks about 2 possible ways to block(?) the Itaconate shunt if I'm correctly. One is blocking CAD for which there currently isn't a known drug, researchers at Utah are working on this apparently. I saw Janet Dafoe post that they found something last week I think, something they now want to...

What @rvallee says tracks for me. We've got a number of publications that all need to get sold who have their own best interests at heart. We've got scientists who do likewise. Why can't everything be anonymized and uploaded to a central point with the researchers conclusions, where then...

https://me-cvsvereniging.nl/ This would be my go to for Netherlands. mecvs.nl has actually been horrible for patients so I'd recommend anyone to steer well clear of them. They're the ones backing the ME Lines consortium headed by Judith Rosmalen and they have been supporting the BPS approach...

Was searching for this on google to see if it was available in audio but can't find it. Looks interesting at least, thanks for posting.

I think the money could've been better spent, doubt this is gonna turn up much results. Might help with advertizing.

The grant model seems severely flawed in general. A good way to secure more grants seems to be to provide positive results which is a surefire way to introduce bias. I've never gotten this about (medical) science. I agree that it seems much more logical to have money available year on year to...

Can't read the entire articles but there's a lot to pick apart in these two sentences alone. First they prime what I suppose was to be an open discussion by saying psychology works. Generally better chances could mean anything though, could just mean that 70 out of 100 patients get a bit better...

I think whatever it's gonna be it's gonna be maddening. I just hope it's something they can easily fix in the here and now so we can have our life back asap.

Hadn't looked at it that way tbh, but you're probably right. Would be great if we had an influx of new scientists working on ME/CFS.

It's just nice to see efforts paying off. The influx of money in the past 5(?) or so years has been unprecedented. Now vigilance is needed to make sure it gets spent appropriatly. I will say that one bugbear for me is that everyone seems to want to spend it in their own country. We've got the...

Littered with them most likely. Wouldn't be on my christmas wish list.

Always makes me happy to see healthy people doing stuff to help us. I don't always comment on @Mike Harley and I can't find his thread at current but I love what he, Megan Elder and so many others do for us.

Poignant way of describing it yes. There are still days I feel like smashing everything in the kitchen cabinet against the wall btw, would cost too much money and energy though. When I was lying in bed for 18 hours a day I felt like you feel now @V.R.T. , Which isn't really anything to do with...

There was a nice little one-two between the one patient organization still supporting the decisions made and ZonMw where the patient org warned that if it went on like this ZonMw might back out entirely. The reporter had contacted ZonMw who didn't want to come on air but did hint that this would...

Apheresis being the treatment where they pull your blood, take out what they don't like and put it back in again right?

It's not really the psychosomatic part, which is coping with a severely debilitating disease that we're "fighting" with. But I'd find more help with that on these forums than a psychologist or psychiatrist could give me.