I concur that this is a very unprofessional group that pretends to help but ends up doing a lot of damage to the myalgic encephalomyelitis patient community. They host an online discussion forum to support patients with ME but end up pushing a lot of pseudoscience and disproven treatment method and hiding corruption by favored groups through selective enforcement of rules and censoring people who are not in their clique of approved groups and individuals. I caught them suppressing critical discussion of coronavirus-19 vaccine concerns and treatments, the Open Medicine Foundation's inability to generate any meaningful research, and attacking researchers who want to share project status. They also give their own treatment recommendations which contain pseudoscience and disproven treatments as a link so this violates their own rules. This is a very vile group that I used to support through Amazon Smile but I switched my funding to the Solve ME Foundation which is much better and actually is making progress. Do not support them. For a better ME patient forum visit HealthRising.org.
With its Forums Phoenix Rising provides a very valuable service for people with chronic fatigue syndrome - a greatly under-served disease. The PR Forums may be the most vibrant disease oriented Forum there are. They are a great resource for people with ME/CFS.
As a non-profit - Phoenix Rising, however, is lacking in several areas. While very popular the Forums are not well kept up - and little effort has been made to take advantage of the latest technologies.
Forums, on the other hand, are not difficult to run and Phoenix Rising has a huge community base it could use to create programs to support the ME/CFS community but hasn't done so. Financial reports are few and the Forum moderators can be harsh and unyielding at times.
Phoenix RIsing provides a very valuable service with it's Forums but it could - given its position in the community - be doing so much more.
Review from Guidestar
This is a very unprofessional group. The board of directors run this website like wild cowboys making up the laws as they go. Within their blogs is abuse against disabled persons that they neglect to handle. When brought to their attention, they then block and ban the person who filed the complaint. When asked for their documentation which is to be supplied by law to parties asking, they deny the requests and block the requester. They seem to think they are above the law and have been sued for inappropriate actions, even failing to show up for their court action. Major bullying going on behind closed doors, a real fraud!
Review from Guidestar
Phoenix Rising has been there for me since my daughter was struck down with CFS at the age of 11. I am not familiar with what charitable activities Phoenix Rising might do beyond providing one of the most vibrant, active, knowledgeable forums that I've ever encountered, but frankly, that's enough! The self educated M.E. / CFS sufferers on Phoenix Rising can knowledgeably discuss all of the current research on the disease, report their experiences using medical treatments and "alternative treatments", discuss genetic SNPs and their implications, and the best protocols to follow if you have a problem genetic mutation. They provide extensive discussions of methylation and detox, how to follow protocols and how to interpret your symptoms. I have never found another forum that provides such comprehensive and in-depth discussion of an illness. Phoenix Rising deserves FIVE STARS.
Whoa, Man! Where do you get your $$$? What percentage of it goes to admin and what goes to serve your clients?
This is actually a blog with an internet forum attached which belongs to one individual. I would like to see the financial reports. If Phoenix Rising actually does any charity work, I have never seen it.
Suffering with a poorly understood debilitating neuroimmune illness has wrecked havoc in my life. Phoenix Rising opened up my world to other sufferers just like me. They provided not only much needed information on medical care, treatments, and the latest research, but also a warm and supportive on-line community that reaches out to each other on a daily basis.