PSSD Forum

I have followed the r/PSSD in Reddit for very long and I was happy that after certain period of ridiculous censorship a few years ago it has been a place for open discussion as long as it has stayed civil.

Now anyway recently it seems that something has happened in the moderator team and I have seen and heard of many posts or at least comments being outright deleted even if they were not offensive in any way.

It seems for example that a person can not question the activity and approach of researcher Roberto Melcangi, even if there would be valid justification and arguments to do so.

This certainly will not help the community and actually it will just do harm for it. The word must be free as long as the discussion is civil and the posters have sincere thoughts in mind and even factual backup for what they say.

Also it seems that with the recent change in the moderator team certain theories of the etiology (that actually have a lot of backup in real life to justify them) are also systematically seen as something to be put down, even if I don't think I have sing any outright deletions regarding that yet.

The type of messianic appreciation of certain figures regardless of some not so perfect things that they do is not healthy nor sensible.

It is nowadays a forum of well over 10,000 people and it should be a place where people can present their ideas and thoughts and factual things that they have found out, no matter what they relate to as long as they relate to this topic and area

Fear or personal agendas of moderators should not be any drivers of such a forum discussion. Things should be as factual as possible no matter if they are nice or not.

People, use your voice if you see overblown reactions like I have seen and heard of recently.

This community is anyway suffering way too much, and there is no sense and no need for further suffering caused by unnecessary internal censorship.

I hope this can be an open discussion here, civil but open and fair.

I for one think the donations went to scammers. There is a complete lack of transparency and no one is allowed to question.

Im technically still a mod there but have not been active in the past 1-2 yrs, in order to focus on maintaining this forum. Moderating the PSSD subreddit is an arduous, thankless job. There's 1000x more trolls, scammers, bots, and generally bad-at-following-rules members as people drift into r/PSSD from other subreddits. Users are trigger-happy on the "message the moderators" button for personal squabbles or other non-mod related issues that fills the message box. And there is no way to perma ban anyone as they can always create a new Reddit account, unlike this forum where we can ban by email or IP at least. Plus, in this forum we require an intro post, which weeds out 90% of bad users.

That said, I do feel that the active mod team there (of which some are very new) tends to lean in the direction of too much censorship, especially with the strict automod rules that create a lot of "can you approve my post" type of requests, many of which are not attended to in a timely manner. It's hard to criticize their approach from the sidelines, as I'm sure they are dealing with a lot of shit posts on a daily basis, and mod decisions are often made in split seconds due to the volume of requests. But I can take a look at recent actions and talk to the mod team if needed.

In my experience modding PSSD communities, you cant please everyone. You either dont censor enough and get people complaining about posts they dont like, or censor too much and get people complaining about that. Like I said, my moderation style leans towards less censorship and therefore letting some shit posts slip through the cracks from time to time, in large part because it takes too much effort otherwise. Thankfully, this forum does not get enough traffic for it to be much of a problem. But in r/PSSD, if there were no mods for example, it would be complete chaos.

Anyway, feel free to DM me the posts you feel were wrongly censored on r/PSSD and I'll look into it and see if I can make recommendations to the mod team there.

Thanks for reply,

As l said, there should not be almost aggressive approach to valid criticism (or questioning) regarding figures like Healy and Melcangi, in things that the simply are not or do not seem to be doing in a coherent and smart way - it is something that should be also possible to be discussed

That has been my main concern at this point.

Also I think there seems to be some bias to downplay neuropathy in the etiology discussion, even if there is more and more proof of it.

Someone made a post about how Zuranolone really helped them and someone asked where they got it from and a mod immediately replied saying there’s no sourcing talk even though this is not listed in the rules and Zuranolone isn’t an illegal drug. It’s ridiculous these people get to determine what’s allowed. The propeciahelp forum is basically dead because mods also over censored when people posted about theories and such.

This is a very frustrating post, complaining about things the r/PSSD moderator team has repeatedly addressed.

You simply cannot reason with people like OP and others commenting on this post. They have an agenda and a perspective and there's no changing it no matter how hard you try - they will just keep complaining.

One of the things the moderators have to deal with on r/PSSD is what has been going on with the PSSD Community for over a decade - mentally ill people believing they know what the cause of PSSD is. Except this time those people are dictating their beliefs toward the only person doing experiments and following the scientific process to determine the actual, underlying pathophysiology of PSSD.

The people complaining loudest about this, like OP, are often the people with the least understanding and knowledge.

Communicator wrote: ↑Sat Nov 02, 2024 4:43 pm Thanks for reply,

As l said, there should not be almost aggressive approach to valid criticism (or questioning) regarding figures like Healy and Melcangi, in things that the simply are not or do not seem to be doing in a coherent and smart way - it is something that should be also possible to be discussed

That has been my main concern at this point.

Also I think there seems to be some bias to downplay neuropathy in the etiology discussion, even if there is more and more proof of it.

This has been addressed many times. For example, in this post

https://www.reddit.com/r/PSSD/comments/ ... _research/ Please read.

If OP actually understood neuropathy, they would understand neurosteroids (one of the areas Dr. Melcangi has been studying intensely) play a role in neuropathy - basically, neurosteroid issues can underlie neuropathy.

Understanding neurosteroids in the context of PSSD will give more information on neuropathy in the context of PSSD. So OP is literally complaining about getting exactly what they want studied, in a more comprehensive way - they're just not knowledgeable enough to know it and refuse to accept that fact when presented with information in the aforementioned post.

If somebody like OP had their way, the entire subreddit would be contacting Dr. Melcangi demanding he research according to what they believe is correct... except he's already exploring what could potentially be the underlying mechanism for what they believe is correct.

Do you think that would be beneficial?

Should this individual's perspective on what should be considered "coherent and smart" be taken seriously? I would say not.

DrugsAreBad wrote: ↑Fri Nov 01, 2024 9:42 am I for one think the donations went to scammers. There is a complete lack of transparency and no one is allowed to question.

This is another example of the type of people the r/PSSD mods have to deal with, and believe me there are many. They don't just criticize the direction of research, they claim the people doing it are "scammers" despite the researcher being donated to having released many, many studies on both PSSD and PFS. The researcher just released a brand new study yesterday, but somehow they are a "scammer".

https://link.springer.com/article/10.10 ... 24-04592-9

Again, unchecked calls of this researcher being a scammer would most likely result in harassment to the researcher.

How would that benefit the community? This is why comments like that have to be removed. Then the commenters screech about "censorship".

What they also don't recognize is the donations from the PSSD community going to this researcher at present represent only a fraction of his research budget, which he primarily gets from his University. Pretty bad scam if you ask me.

DeepRacer wrote: ↑Mon Nov 04, 2024 11:23 pm Someone made a post about how Zuranolone really helped them and someone asked where they got it from and a mod immediately replied saying there’s no sourcing talk even though this is not listed in the rules and Zuranolone isn’t an illegal drug. It’s ridiculous these people get to determine what’s allowed. The propeciahelp forum is basically dead because mods also over censored when people posted about theories and such.

And then you have people like this. Zuranolone is a brand new drug that is only approved by the FDA for Post Partum Depression. So this person, DeepRacer, is actually complaining because moderators don't allow desperate, vulnerable people to ask for sources for a drug that can only be acquired by buying it from a lab in China that has reverse engineered/done their best to duplicate the chemical composition. Let that sink in.

Not only that, their minds can't even begin to consider how scammers might take advantage of a desperate, unknowledgeable person asking for a source for the drug, with scammers DMing that person and offering to sell them the drug, asking for payment, and then disappearing with the money.

Beyond that, Reddit banned sourcing of Controlled Substances seven years ago.

https://www.reddit.com/r/announcements/ ... g_the_use/

Guess what Zuranolone is? A schedule IV controlled substance. Allowing for sourcing of controlled substances is how entire subreddits get banned - no more r/PSSD.

https://www.federalregister.gov/documen ... ber%202023.

https://investors.biogen.com/news-relea ... ment-women

By the way, you're not even allowed to openly source on this forum.


So I have to ask the people reading this reply - are these the type of people whose complaints you should be listening to?

The people in this post represent only a fraction of the type of people that complain about the moderation style. Other examples of those who complain about censorship are those who claim they got PSSD from things that aren't even psychiatric drugs, or people who create intense negativity in the subreddit when they may have just discontinued or even still be on SSRIs.

It is absolutely necessary to control what people post on the subreddit, removing posts and comments as necessary, as it is full of impressionable people who are suffering.

While it's impossible to please everybody, it's clear that if you have to disappoint anyone it's best to disappoint the people who are damaging to the discourse surrounding the condition, whether they know it or not.


I don't expect to have any kind of constructive dialogue with OP or the others commenting here. They're too far gone to understand what they're complaining about. But suffice it to say, being a moderator on r/PSSD is a thankless, no-win job when you have to deal with people like this.

Your attitude shows that you don't seem to understand a lot of things, and I think it is even a risk for fair freedom of speech in r/PSSD

Also you see yourself as some judge to say who is mentally ill or not and whether their thoughts are valid or not, which is plain arrogant and a sign of you not being on top of things.

I have for example seen you get angry about some clearly logical people simply saying A WELL JUSTIFIED IDEA, that Melcangi should aim to test for SFN for a proper sample of people. In the group of people that have been tested so far the n is already over 30 and about 70% have been positive. (leg biopsy)

For anyone logical enough it seems like a thing to propose and do (with this level of indication) TO FINALLY GET A SCIENTIFICALLY VALID HUMAN BIOMARKER OF THIS SYNDROME TO BE ABLE TO USE IT IN MANY WAYS THAT WOULD HUGELY BENEFIT THE COMMUNITY IN ORDER TO GET VALIDATED for example get finally rid of the kind of gaslighting that ironically you yourself as a moderator of r/PSSD also do. "Mental". Sadly comical and dismissive.

I saw your response to this was pretty much "f off don't go telling a researcher what to do", when you yourself seem to be a person that has very lacking scientific and logical understanding, sorry to say.

Can you not see that such posts and comments are constructive and very logical, people like Melcangi are no gods that one could not or should not also question. He has been dismissive towards also very logical and well formulated questions before.

There are some knowledgeable and logically capable and experienced people in the community that may well have very valid ideas to propose to these researchers. Who are you to dismiss such ideas and people with your seemingly very thin or no existing science understanding and logic? Let's be fair.

All I can say is that I am sorry that this community that anyway has to suffer also has to suffer from moderators that cannot even understand that they may be causing further issues with their attitude and censorship.

Yes, I sure appreciate the voluntary work that moderators are doing but also the quality of the work matters. Sadly just like with the researchers, the community doesn't really have much choice.

Anyway please do not stand on the way of freedom of speech in topics like this and don't be dismissive when you yourself don't have the credits to be dismissive.

Ps. Can you not even see how you went out to ramble into all kinds of irrelevant points in your brainstorm answer...

What is the "agenda" that you are talking about? Just absurd.

You call smart and educated people that justify their points in an appropriate way (like I do here) "too far gone"

What a maximum level of Dunning-Kruger effect and arrogance.....

It is funny by the way remedy when you say

"People that claim they have got this from something that are not even psychiatric drugs"

This perfectly tells how lacking your reasoning is. There is no exact knowledge of what this syndrome is, and it is a real life fact that certain other chemicals also seem to be catalyzing the reaction that happens and causes the outcomes that are called "PSSD"

With your non-scientific and logically lacking thinking you are personally insisting things that are in no way proven or validated.

That is far from optimal from a sufferer forum moderator, that also has a tendency for censoring and being seemingly aggressive.

If you ask me, it is a negative thing for the community to have such people as gatekeepers of discussion.

Sorry to be direct and outspoken but I am not wrong about what I say, and I share this view with a number of people already at this point.