ME/CFS and Long Covid charities/ organisations - International and National

[Hutan]

We have been keeping this list for patient charities - so, for organisations like Solve ME and AfME, that typically do not charge for advice.

I think of Bateman Horne Centre as more of a private clinic, although it does share information, provide free services to patients and raise awareness. I'm not sure, what do others think? Certainly there is overlap. We could perhaps have other lists for specialist ME/CFS clinics?

 

[Hutan]

https://paisalliantie.nl/ - not sure if it fits as I believe its mostly just a connecting grouo between the different dutch organization, and its not only ME/CFS or long covid. (I don't know anything about it but I saw it linked a few times in dutch communities)

That's another one I'm not sure about, in this case because I don't know it. Does it have enough of a focus on ME/CFS and Long Covid? There are lots of charities for disabled people for example, but if we include them, our list will be very long and not very specific.

Can some of our Dutch members tell us more about this organisation?

 

[Jonathan Edwards]

I'm not sure, what do others think?

I agree. I think Bateman Horne is a commercial clinic. It also trains doctors and does some research but if you include commercial clinics the list becomes very different.

 

[Alinda]

Does it have enough of a focus on ME/CFS and Long Covid

It focuses on ME/CFS, long covid, q-fever fatigue syndrome (I believe this is often ME/CFS?), chronic lyme and other tick related chronic problems, post sepsis syndrome and post legionella syndrome.

Seems like all of these are ME/CFS or have a lot of overlap with ME/CFS.

But I don't think you can consider this a patient organization in itself.