Search results

This just makes me realize how lucky I've been with my current GP. He lacks knowledge about us, as most GP's seem to do. But he's been open-minded and when something didn't work(the CBT/GET I pushed for in 2005), he acknowledged it, made notes and made sure I wasn't sent down that path again. If...

Been a member of the ME/CVS Vereniging for a couple of years now, because I don't recall there being anything particularly negative about them and they do a lot of good work. ME/CVS Stichting which is now ME/CVS Nederland has had a bad rep for as long as I can remember. Then there's a sort of...

I actually prefer it goes through trusted charities, with an emphasis on trusted. They'll know more than me about where to put the money, so that's preferable to me going around the web and clicking on projects. I donated to AfME for this specific project though, but I'm sure it'll be money well...

In ME/CFS patients, something in the body can now be identified that is linked to the disease https://www.trouw.nl/gezondheid/dna-variaties-in-verband-gebracht-met-chronische-ziekte-me-cvs~b1b8a8e9/?referrer=https%3A%2F%2Fwww.google.com%2F First big Dutch newspaper I found reporting it. It's a...

They've got some sensible stuff out and some good science and then there's this. Somehow feels worse than only having the crap on there.

Ah good, came across it on Bluesky and forgot to post it here. They're referring to an earlier video Robert Phair did a lot. Does anyone know where to find that video?

I feel researchers are creating hype to pull in funding. At least some of them. Giving the deplorable level of funding the disease is getting I somewhat get it. Most of these hypes only move the field forward marginally, if at all. So I've learned not to expect anything. I guess new patients...

https://mecentraal.wordpress.com/2024/09/30/oproep-vragen-aan-ruud-raijmakers/#more-32165 ME centraal is asking people to send in questions for Ruud Raijmakers, if anyone here is interested in that. He manages one of the projects at the NMCB consortium.

My Dutch lawyer also told me it was easier to get disability benefits with a psychiatric diagnosis. I was lucky to have heard some cautionary tales and I didn't want to have that diagnosis hovering over me for the rest of my life. These systems aren't equipped to handle anything than the...

I hope more of her colleagues pick it up then. Would be of great help if there'd finally be a good counter to the BPS narrative.

Definitely, we have 5 or so in the Netherlands and it's a pain to find out who to align with and who to donate to. If they even actively search for donations. Was searching a bit for organizations to donate to but there are so many of them that bring in tiny bits of donations... Could make a...

Small thread about it with some comments from an MIT researcher. In response to what Davis was saying and what Ely David is doing with JAK STAT inhibitors.

https://solvecfs.org/research-and-registry/ramsay-research-grants/meet-the-researchers/vincent-lombardi/ Are there any publications out on this study yet? That should shed at least some light on the use of the specific drug Davis was talking about.

More than 2000 comments on the piece. A lot of patients etc. chiming in. Good to see.

Don't have the energy, but I don't believe it would be for nothing. That's my opinion on most advocacy. Some of it might not bear fruit now, but it can definitely bear fruit later. The retracted bit for example is documented and can be used against these writers if they were to write further...

It's something I could've said at some point, before learning better. This forum does a great job in educating, but it also might give a distorted vision of reality because people are so well educated about ME here. Most people I come across in real life don't know about how our words are...

I feel we shouldn't hold these people to any manner of consistency or other sorts of scrutiny. It might make them look silly.

I disagree.

Great article indeed.

The guy that first diagnosed me told me there was nothing he could to help me. Which is devastating but also absolutely fair imo. I think a lack of this sort of honesty is one of the reasons we're still up the creek without a paddle.