ME/CVS Nederland (Netherlands)
- Thread starter Yann04
- Start date
Tree
Senior Member (Voting Rights)
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
- 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
Last edited:
Grigor
Senior Member (Voting Rights)
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.
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.
Years ago this club really lost me.
Only patients that could not lift a tea cup were the real ME patients.
Seing a connection with polio, they said.
The rest of the ME/CFS patients suffered from a "fashion" disease.
I could lift a tea cup. Ouch!!
Who needs enemies with friends like that.
When new people at the top of an organisation take over, so can individual opinions take over the organisation.
Keep an eye on MEA.
Only patients that could not lift a tea cup were the real ME patients.
Seing a connection with polio, they said.
The rest of the ME/CFS patients suffered from a "fashion" disease.
I could lift a tea cup. Ouch!!
Who needs enemies with friends like that.
When new people at the top of an organisation take over, so can individual opinions take over the organisation.
Keep an eye on MEA.
Dolphin
Senior Member (Voting Rights)
I’m wondering whether you could be mixing it up with one of these groups that don’t have CFS/CVS in their titles?
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 onemanshow with a guy that is a purist on both the terms used for the disease and those who qualify as a patient. I don't find him particularly helpful, but don't really keep up-to-date with what he's doing and saying anymore.
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 onemanshow with a guy that is a purist on both the terms used for the disease and those who qualify as a patient. I don't find him particularly helpful, but don't really keep up-to-date with what he's doing and saying anymore.
Jesse
Senior Member (Voting Rights)
Yeah it sounds like ME Vereniging.