Jeff S.

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.

This is a terrible local social media hub that is working to control communications in the USA. They are allies with Black Lives Matter and ban people who disagree with BLM progressive democrat propaganda. I was a community lead for three years and posted a Guardian article about lead poisoning in black Americans that questioned the reason for low IQ and combativeness in this group as being from systemic racism by whites. Several other neighbors agreed with me. They labelled it hate speech and banned me from the site. This is from their website:

We stand in solidarity with Black neighbors
As a company, Nextdoor supports the Black Lives Matter movement. All Lives Matter and Blue LivesMatter content is explicitly prohibited when used to undermine racial equality or the Black LivesMatter movement. Support for White Lives Matter is prohibited on Nextdoor. Learn more about our
Commitment to support Black neighbors.

We use technology to fight bias
Since 2015, we have partnered with Dr. Jennifer L. Eberhardt, a social psychologist and the author of
Biased, to better understand how Nextdoor can mitigate implicit bias – i. E. unconscious forms of prejudice that influence our actions. We found that adding some friction to the posting process helpsslow people down and consider their own implicit bias. We also developed a new feature called the, which automatically flags offensive or hurtful comments and encourages theauthor to be more kind and thoughtful when they post. Ultimately, these tactics have led to a 75% decrease in racial profiling on the app.

We took this one step further with the launch of the anti-racism notification that detects language that could be specifically discriminatory to people of color. The notification detects potentially racist phrases such as "All Lives Matter" or "Blue Lives Matter," and prompts the author to consider editing."
(Nextdoor.com. "Discussing race in neighborhoods." Accessed May 22,2021.)

This website is a free Question and Answer site. Its strength is that people are encouraged to post their backgrounds so you can vet the quality of answers and disregard the ones from people who don't bother to do this. On the other hand, the site doesn't verify the background statements or the posted names of contributors so anyone who really wanted to give dangerous bad advice could just use a VPN to hide their IP, post a false name and say whatever they want. From the standpoint of a contributor I felt very unappreciated. Contributors don't get any money so there is no incentive to continue doing it. For this reason you see people mainly doing it socially, either because they are in retirement or disabled. The site really stinks when it comes to controversial religious and political topics. If you aren't politically correct and post a referenced article you will probably gain a following of stalker enemies who read every post and will constantly complain to moderators about you until you get banned from the site. For example, try discussing average IQ differences between races. Legitimate complaints would be ok but moderators are so asinine that they don't even follow their own rules. They will interpret posts discussing a topic as being harassment and attacks on a group just because it is controversial. So you are not allowed to express an opinion that ever is derogatory even when it is earned. It would be analogous to being banned for saying that that Nazi's were mass murderers because this would be hateful towards them. They go out of their way to protect US blacks who are the most vocal. They have also defending medical quackery by supporting unethical chiropractors.