We need a way to consolidate theories and credible n=1 recovery stories

This forum structure makes it hard for us to really consolidate ideas and make progress as a group.

Consider sites like Reddit for instance. Many subreddits have a Confluence-like doc where the admins gather thoughts on various topics. Why can’t we have a section for best practices that help reduce symptoms of PFS (e.g. diets and exercise routines) or a list of possible theories with a list of papers that support or unsupport those theories?

We can even have a compendium of treatments we’ve collectively tried or are scientifically backed/not back (like examine.com but perhaps with anecdotal evidence as well).


I agree. The more I read on this forum the more I become interested in the whole AR de/re-sensitizing hypothesis. But it’s really annoying to gather all the scraps of information from all over the place in separate threads/posts. We need as many medical articles as we can find to (dis)prove the potential/valdity of these hypotheses and we need real researchers/endocrinologists/neurologists to give their realist/expert perspective to evalaute them, estimate their potential and comment on the possible dangers.


100% agree.
Some of the older members here should create a README. like a set of guidelines that for new people so that they don’t accidentally consume bad foods and worsen there condition unnecessarily. Knowing that essential oils are strong endocrine disruptors would have saved me a lot of pain.

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I’m not sure you can get away with a making a thread like this without having everyone chime in with their 2 cents and shit getting out of hand. People just pop off because they feel so passionate about their theory being the right one.

It’s extremely frustrating seeing people come here and believe the first theory laid out in front of them.

There used to be more talk about theory from admins but I suppose they don’t want to post the same thing a million times, so you really have to search through the archives here to find the more realistic root of the problem.

Speaking about theories can be harmful in making us sound “crazy” and also in trying things that make us worse. I think the idea is no discussion is better then outrageous theories and discussion. Unfortunately I think there is predominantly crazy theory on here still.

Even though admins may have strong opinions I think that no one is in a position to say anything with certainty which is why the focus is on getting this through to scientific testing, so then we can talk about it with certainty and other theories will be shut down.

There was a paper written in like 2010 from admins, I’d have to go look for it but. Also @axolotle is writing a paper, I’m not sure what level it goes into at the moment but it sounds like it’s going to be something people can take seriously for once.

In terms of recommendations, there would only be recommendations of what not to take, but even then it’s way more complex because there are distinct types of PFS. Once you know what you have it’s obvious what not to take, but annoyingly enough you have to try stuff to find out. In the end admins don’t want to be responsible for being the ones to make you worse or being the ones that held you back from taking something that could have helped improve your life. The worst type of PFS is very reactive and even the smallest thing can cause suicide. Others can supplement with improvement and no problems. So what can you suggest? It’s a dangerous line to walk.

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