That's reassuring, I've been dealing with the old Phoenix Rising forum and their administrators have a strange philosophy of only encouraging nonprofit research and have taken a position that they are not interested in helping any for-profit research which is automatically suspect (although nonresearchers can discuss any treatment system they want no matter how questionable and moderators may attack criticism of methods as an attack on the member pushing their woo treatment system). If someone is trying to research a new for-profit ME treatment they shut them down by not allowing them to provide any information about the method they are researching. This is never done in research. Investigators disclose financial interests but are still allowed to speak. I quit participating in groups on their forum over this. Also they have non-health professionals making decisions about patient care recommendations and research topics. They have a sheet of lay suggestions they always link to for new members that includes many disproven treatments. It is a zoo.
They make up rules on the fly without posting them and then go after people for breaking them (such as if a researcher discusses the project they are working on they automatically condemn it as marketing and start censoring their posts).
PR is listed as the nonprofit "PHOENIX RISING AN NEID CORPORATION" and has sharp criticism from donors (including cort).
Volunteer, donate, read reviews for Phoenix Rising An Neid Corporation in Carson City, NV plus similar nonprofits and charities related to Health, Health Support, Specifically Named Diseases
They also censor political commentary if it imputes negative motives behind US national agencies against ME patients (i.e. NIH underfunding ME research to help insurance companies deny claims and to reduce entitlements which they ban as conspiracy theory.
They also won't allow any criticism of the Open Medicine Foundation so there is a lot of favoritism going on. While they allow a member called HIP to make treatment recommendations across numerous posts they attack others for doing the same thing. This violates one of their rules so they are enforcing selectively.
I totally understand Cort's comment that they want total control. That is exactly what I experienced. This is a case of the monkeys running the zoo while the zookeepers and veterinarians are locked in cages. It's a very toxic environment. They even have a rule against people talking about their mistreatment on the forum. So overall I think it is a negative for the ME community and this far outweighs anything it is doing for ME patients.