ME/CVS Nederland (Netherlands)

[Yann04]

Hi.
I’ve heard multiple times on this forum that ME/CVS Nederland is problematic. I think for example @Solstice and @Grigor have brought it up. I can’t find what the reasoning was though. Would love to have more context. Thanks.

 

[Tree]

This is what I remember (not sure how accurate)
- They are the only ME patient organisation funded by the government because they were the first to apply as a patient organisation for ME ptnts

Apparently this is a policy in the Netherlands, and a second one can be subsidized if they have more than 50 percent of members of the already subsidized one. https://open.overheid.nl/documenten/e40ab4ef-4417-45f3-8810-271f77383765/file


- They have ties with a rehabilitation clinic that claims a 90 percent recovery rate

There is probably more.

Edit;
Added info on patient organisations

 

[Grigor]

Yeah, they have worked with BPS CBT researchers before, and although she's now a project leader of a biomedical consortium via the ZonMw program, they're also working with prof. Judith Rosmalen. She's vice president of the EAPM.

Not all they do is problematic, but they're definitely prone to making some very poor choices which makes them a controversial and disliked organization by many in the Netherlands.