I agree. I think the definition of ME/CFS used by a charity or research institute is a lot more relevant than its name. Refusing to donate to any ME/CFS organization using "CFS" in their name would preclude donations to almost all organizations in the US.
I agree, right now at this juncture, the most vital information is the criteria that the studies are using of who they include (or exclude) for the studies.
To me, if they are using the new ICC criteria or even the CCC, I would feel that the study has more value to me.
Studies that are done, without clarifying the cohorts the are using, are useless because whatever the outcome, what does it really mean?
I would also look at who is heading these studies and where. Whose backing do they have?
All the ones that Sushi mentioned earlier are noteworthy and important centres. The ideal would be if they would all be in touch with each other and
work in synchrony. Regardless, I am excited about each and every one of the. Never in my 10 years with this disease, did I see so much effort put in with
experts in the field to study different aoects of it and try to come up with some answers for them.
If some people do have money that they want to donate to one (who can afford to give to all?) maybe, it would make sense to give to the one who is geographically closest to where they live.
I live in NY and am a patient of Dr. Enlander's and as some people who know me better here, I'm a big fan of his so I would donate to his centre but, as much as I would want to see the whole world donating to him, there is a need for each one of these centres.