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    Phoenixrising.me

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Overview

Phoenixrising.me has a consumer rating of 1 star from 1 review indicating that most customers are generally dissatisfied with their purchases. Phoenixrising.me ranks 187th among Health Information sites.

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Top Critical Review

“A questionable ME CFS charity with heavy biases that harasses forum participants”

Jeff S.
7/19/21

This website is registered as a nonprofit charity called Phoenix Rising An Neid Corporation (PR). It is the most visited Myalgic Encephalomyselitis-Chronic Fatigue Syndrome (ME/CFS) forum on the internet and was created by former president and myalgic encephalomyelits patient Cort Johnson. The charity publishes a free online news site with ME-CFS articles and maintains a questionable patient forum. The organization has serious problems due to biases, conflict of interest, unqualified expert moderators. Its biases are heavy pro-CDC/institutional with censorship of criticism, protection of organizations related to a board member's family (Janet DaFoe's who is related to the Open Medicine Foundation MECFS charity) and unfair harassment of forum participants. The first problem is that while the group's about us section of their website claims to "provide the ME/CFS community with accurate, objective, up-to-date information, and to produce internet projects that will help patients find better practitioners, help them choose better treatments, and empower the community." they actually do not do this in practice. Medical content decisions are made by unqualified laypeople (ie. A forum member *******@HIP who has a mathematics background with no health care credentials who supervises their treatment recommendations) and there is a strong bias toward promoting unsubstantiated treatments based on anecdotal claims. As long as a questionable treatment is in favor with them they will allow it to be promoted and have attacked people who criticize it as being unsupportive to patients and subjected them to suspensions and bans. Meanwhile if someone is not in their clique and wants to share information about a treatment they run across they will not allow this information to be shared claiming that it is self-promotion (marketing) or not evidence based. All individuals talking about any research they are doing that is not registered as a nonprofit is banned from the forum. They are biased towards the ME CFS research charity called the Open Medicine Foundation (OMF) headed by Stanford geneticist Ron Davis PhD whose wife Janet Dafoe sits on the PR Board of Directors.(see image) OMF has been criticized for monopolizing researcher profits by demanding that they surrender all rights to patients to OMF and for a failure to make meaningful research progress while focusing on patentable inventions that would make money for Colleges. Despite his father heading a research group on ME CFS the OMF founder's own son Whitney Dafoe has severe ME and does not appear to have been significantly helped by their projects. The group also has a pro-US government, democrat bias which causes them to censor criticism of the Center for Disease Control, covid vaccines and political groups. They use rules against marketing, political discussions and conspiracy theory to shut down criticism of these groups and topics which has a chilling effect on forum discussions. The bottom line is that a patient forum should not be headed by laypeople unqualified in healthcare with such obvious biases and this leads to ineffective treatment recommendations, blocking of good discussions and harassment of forum participants. They also attempt to restrict criticism of the group by banning cross posting to other forums and publically releasing email messages sent by forum moderators such as the one in the image. In fact, the founder of PR, Cort Johnson, ended up leaving PR to start a new forum and blog because of internal disagreements with the PR board. The thrust of the charity effort is to support Phoenix Rising and OMF not ME patients so it is self-serving and you would be much better off using the uncensored site healthrising.org if you want to be protected from overt censorship. As it stands the patients using the site get a cultist support group with an agenda that undermines progress towards better ME CFS treatments.

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Reviews (1)

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allenb63
3 reviews
22 helpful votes
July 19th, 2021

This website is registered as a nonprofit charity called Phoenix Rising An Neid Corporation (PR). It is the most visited Myalgic Encephalomyselitis-Chronic Fatigue Syndrome (ME/CFS) forum on the internet and was created by former president and myalgic encephalomyelits patient Cort Johnson. The charity publishes a free online news site with ME-CFS articles and maintains a questionable patient forum. The organization has serious problems due to biases, conflict of interest, unqualified expert moderators. Its biases are heavy pro-CDC/institutional with censorship of criticism, protection of organizations related to a board member's family (Janet DaFoe's who is related to the Open Medicine Foundation MECFS charity) and unfair harassment of forum participants. The first problem is that while the group's about us section of their website claims to "provide the ME/CFS community with accurate, objective, up-to-date information, and to produce internet projects that will help patients find better practitioners, help them choose better treatments, and empower the community." they actually do not do this in practice. Medical content decisions are made by unqualified laypeople (ie. A forum member *******@HIP who has a mathematics background with no health care credentials who supervises their treatment recommendations) and there is a strong bias toward promoting unsubstantiated treatments based on anecdotal claims. As long as a questionable treatment is in favor with them they will allow it to be promoted and have attacked people who criticize it as being unsupportive to patients and subjected them to suspensions and bans. Meanwhile if someone is not in their clique and wants to share information about a treatment they run across they will not allow this information to be shared claiming that it is self-promotion (marketing) or not evidence based. All individuals talking about any research they are doing that is not registered as a nonprofit is banned from the forum. They are biased towards the ME CFS research charity called the Open Medicine Foundation (OMF) headed by Stanford geneticist Ron Davis PhD whose wife Janet Dafoe sits on the PR Board of Directors.(see image) OMF has been criticized for monopolizing researcher profits by demanding that they surrender all rights to patients to OMF and for a failure to make meaningful research progress while focusing on patentable inventions that would make money for Colleges. Despite his father heading a research group on ME CFS the OMF founder's own son Whitney Dafoe has severe ME and does not appear to have been significantly helped by their projects. The group also has a pro-US government, democrat bias which causes them to censor criticism of the Center for Disease Control, covid vaccines and political groups. They use rules against marketing, political discussions and conspiracy theory to shut down criticism of these groups and topics which has a chilling effect on forum discussions. The bottom line is that a patient forum should not be headed by laypeople unqualified in healthcare with such obvious biases and this leads to ineffective treatment recommendations, blocking of good discussions and harassment of forum participants. They also attempt to restrict criticism of the group by banning cross posting to other forums and publically releasing email messages sent by forum moderators such as the one in the image. In fact, the founder of PR, Cort Johnson, ended up leaving PR to start a new forum and blog because of internal disagreements with the PR board. The thrust of the charity effort is to support Phoenix Rising and OMF not ME patients so it is self-serving and you would be much better off using the uncensored site healthrising.org if you want to be protected from overt censorship. As it stands the patients using the site get a cultist support group with an agenda that undermines progress towards better ME CFS treatments.

Tip for consumers:
This is a heavily biased pro-CDC/democrat ME CFS forum that extensively censors posts and gives dangerous treatment recommendations from unqualified moderators. Best avoided. Use healthrising.org instead.

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