Yikes.
Hello,
This is a private website and adherence to the guidelines is a term of use. This policy is not up for debate, and users do not see the majority of anything the staff do, including any warning messages sent, editing actions, or the moderation action log.
Our moderators give endless effort to keep this site in existence as a privilege. As one of the administrators, I am exceptionally grateful for their commitment, the burdens they shoulder and the work they do on a number of projects. I can see @Dubya_B had previously sunk a lot of time he frankly shouldn’t have into trying to continually sieve out assertions of scientific accuracy and the edit history in this thread is enormous. This is not a theory, this is an incoherent pile of biological terms.
We are fully aware users are cognitively impaired and most have an extremely poor ability to differentiate the quality of contributions. Desperation leads a percentage of users to be extremely suggestible when it comes to perceived hope from self medication, and therefore anything with a supplement, drug or diet at the end is seen as a “theory”. This repeatedly and breathlessly happens even when someone signs up to do it with no prior membership, providing an enormous range of scientific assertions with no evidence whatsoever, and usually additionally asserting they have read the whole forum (which we can see is untrue on the server side in every instance). This has been going on for fifteen years.
This is a very serious problem, and some members are profoundly unwell. Asserting pseudoscience not only makes this poorly recognised condition look even less plausible in the eyes of outward observers, scientists and professionals, but they have caused extreme harm and preceded suicide in vulnerable patients by deliberately trying to instill confidence in alternative health suggestions or psuedoscience ideas. In his last post, the last member to take his life had commented on how much worse he had made himself with ideas received elsewhere.
Users are perfectly permitted to share what has helped them. There is a very clear instruction on how to do this in the guidelines:
As examples, instead of using definitive statements about the condition that can appear as factual claims such as “PFS is this”, “This will work every time” or “Do this and it will cure you”, consider using language such as “I believe…”, “You could try…”, or “This has worked for me”.
If a user wanting to sign up out of the blue and share piles of unsupported text that they assert is a scientifically accurate theory for this extremely serious condition and cannot possibly do that with the appropriate humility the guidelines ask, then these assorted people need to write it up in the format of a medical hypothesis with full referencing and clear relevance to the studied clinical situation (PH Survey, Irwig, 2012; Ganzer et al., 2015; Walf et al., 2018; Di Loreto et al., 2014; Rubin et al., 2018; Chiriacó et al., 2015; Fiuk et al, 2016; Than et al., 2018; Melcangi et al., 2018; Mirabal et al., 2019). They can then take it to a professor of steroid biology.
This year, due to the work of the past two years, we are shifting strategy to outreach and practical progress. I am aware some would prefer this to be a completely unmoderated site, but that is not compatible with our goals and the site will continue to operate via the stated guidelines.
Criticism of moderation policy or individual moderator decisions do not represent a matter for patient discussion here and will be removed. If a user believes it to be in error they can PM a member of staff, but the moderators judgment is wholly up to them.
Best and thank you for your understanding,
Axo
