A letter to you, forum

there is also no rational incentive to lie about a recovery besides ridiculous conspiracy theories that they lied to trick people into trying a regimen.

We have been through this before. This is both rational and has happened before. And, of course, people lie on the internet all the time for various other reasons, including scamming, trolling and a sad desire for “fame”. It’s incredibly naive to take stories from anonymous users on an internet forum at face value.

It is pretty rational to assume that some people prefer other people to take risks that they are not willing to take themselves.The incentive/motive is entirely obvious: reap the benefits without having to endure potential downsides. It is risk outsourcing. It makes a lot of sense and is pretty much what most people here do who are happy to read experiences from other people, while not taking any risks themselves. That is understandable.

Now add desperation/immorality and some people will think they can trick people into taking the risk by pretending they had a positive experience on the drug. Again, this may be morally corrupt, but it is pretty logical:

a) “I have PFS and I want to treat it.”
b) “I think “XY” may have benefits in treating PFS.”
c) “I am afraid to try “XY”, because I could get worse.”
d) “Whenever people post positive experiences on the forum, other people immediately jump on the bandwagon and try the same thing.”
e) “If I pretend to have had a positive experience from XY”, people will try it and report their experiences. I will then have more information about whether “XY” can help with XY without taking any risk".

Again, this is entirely logical, albeit morally corrupt. Your argument that there is no rational incentive is clearly wrong.

This is also not a “wild theory” or “conspiracy theory”. A person being an opportunistic a****** is hardly a wild theory. And if that’s the weakest “conspiracy theory” you’ve read, it is probably the first. You realize that there are people out there who think almost all scientists and governments around the world including hundreds of thousands of people (many of them civilian) with different values, interests and allegiances have conspired to: a) fake a pandemic, so that a certain president looses an election, b) to hide the fact that the Earth is flat, c) to pretend the earth is warming to increase taxes etc.? Oh, and Lizard people!

So, a person being an opportunistic a****** and with an obvious incentive is not a “wild theory” and not a “conspiracy theory”. I mean, it literally cannot be a conspiracy theory as a conspiracy by definition involves multiple people. Nobody has suggested that PAL has colluded with anyone.

Now I think it is pretty obvious that there is a logical incentive to lie and that you have been wrong about there not being any such incentive. Your claims that this “theory” is particularly “wild” or “weak” are clearly wrong as well. But I’ll give you one more to end this right here.

This thing, you know, this “wild theory”, this thing without any “LOGICAL incentive”, that “wasn’t rational at all”, “one of the weakest conspiracy theories” you have read, is LITERALLY what happened on a PSSD forum, where a user admitted to have lied about positive benefits from a drug to trick people into taking it. It wasn’t the first time this happened there either and it has probably happened here, too.

I understand that people here are desperate and want to focus on the positives and ignore all the negatives, including negative effects from “treatments” and the idea that some users and their story may be fake to trick people, troll people or get money from people. But these things happen. Ignoring them will not make these things go away and leads to posts like this, where you take up a completely irrational stance and have been spectacularly wrong.

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so dubya_B as a moderator of this forum…is your base case position that recovery is close to impossible or extremely rare?

The other dangerous point here is the confirmation bias evident on this forum. Generally the most frequent posters are the worst impacted, and naturally more bearish about our prospects. Interacting with other negative people compounds this negativity further. People discover they have pfs for the first time and fine this forum, and are then scared out of their lives at the prospect of a life sentence. Its not helpful

Removing all the recovery caveats mentioned above, you are still looking at 100+ recoveries I would estimate. You would know better but I think the number of total members is c 4000? If you filter for people who have posted more than 10 times you are probably looking at 1000 (probably the worst effected members). So taking the most bearish interpretation possible, you probably have a c. 10pc chance of total recovery if badly affected. But this ignores all of those who never come back after recovering and banish this forum to the back of their memory, which is understandable human behaviour

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Yes I’ve read your post and disagree with it. I’m sorry but it’s still a weak conspiracy theory to try and dismiss recoveries, even after reading your post it still baffles me you believe this.

And let’s say you’re right about some of them being false, that still leaves the vast majority to be real. Or do you actually believe most are lies? That would be even more disturbing coming from a mod here.

Again, the conspiracy theory to try and dismiss PFS recovery stories is the same as people denying PFS exists, you employ the same way of thinking. If you didn’t have PFS yourself you would probably be one of the people denying PFS exists.

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Yes I’ve read your post and disagree with it. I’m sorry but it’s still a weak conspiracy theory to try and dismiss recoveries, even after reading your post it still baffles me you believe this.

You are fine to disagree, but you have not provided any argument why. It is also not my “belief”, this has happened. It is a fact. This makes your “opinion” redundant.

And let’s say you’re right about some of them being false, that still leaves the vast majority to be real. Or do you actually believe most are lies?

I believe that the vast majority of “recoveries” are natural. Most people seem to get better with time (so did I) and many (especially those with mild symptoms) are lucky to return to baseline or close to it, irregardless of what they did or did not. The rest are probably largely scams, lies or trolls. I cannot rule out that some people may react positively to androgenic or antiandrogenic substances. Some seem to react positively (at least temporarily). But it is clear that most don’t react to those substances and that quite some get worse (sometimes after initially feeling better). Maybe there are individuals out there who got lucky to have recovered from such substances, I cannot rule this out 100%. But clearly there is no convincing track record and it is pretty much like playing Russian Roulette.

Bottom line, referencing all these “recoveries” is worthless in my opinion. Yeah, there is a chance of natural recovery mainly for those with mild symptoms and those who have not yet been suffering for long. But it is not something we have much agency over. It will either happen or it won’t.

I think the whole discussion here is a result of a misunderstanding. I doubt anyone denies natural recoveries. They clearly exist. What doesn’t exist is a clear track record that any treatments lead to “recovery”.

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youve just proved my point…and have basically admitted you think you will never get better

Correct…with that attitude you almost certainly will not

Nobody said it was easy, it is clearly not. There are also a large number of recoveries after 1 year, if you have any statistics on this then please share.

Personally I prefer to focus on the 10/20pc chance of recovery (or whatever the number may be), than rotting in misery and gloom for the rest of my life

In the mean time, there are ways to treat symptoms and lead a normal life (ed medication, arginine, testosterone boosters, anti depressants, gym, fitness, diet) which we should all be focusing on on this forum.

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another one…after 4 years and posted today

He’s probably just looking for attention though :grimacing:

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Another irrational, negative response. Instead of being happy you’re being a cynic. Truly a healthy contribution that will improve the reputation here…

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You are fine to disagree, but you have not provided any argument why. It is also not my “belief”, this has happened. It is a fact. This makes your “opinion” redundant.

Sure it has happened that some of the stories are false but it’s a very small part. The arguments you bring are also none existant, because it’s pure speculation from you part. Where is the evidence that these recovery stories are fake? The fact is there is no evidence at all and your conspiracy theory is nothing more than your opinion, that is my argument. It’s also sad and disturbing you put so little trust in users of the community you moderate and your mindset does not contribute to a positive emission of this forum that is here primarily to support people suffering from PFS.

I believe that the vast majority of “recoveries” are natural. Most people seem to get better with time (so did I) and many (especially those with mild symptoms) are lucky to return to baseline or close to it, irregardless of what they did or did not

Sure most people do recover with time but the ones I was talking about were people who actively took steps to improve by following X regimen, taking X sup/medication. Many regimens that recovered people also came back multiple times in recovery stories.

The rest are probably largely scams, lies or trolls.

No evidence for this and just your opinion/ conspiracy theory. Your theory also contributes to the negative reputation of this forum. A comment I read a lot is people who just don’t want to be here because of the constant negativity and toxic mindset.

Maybe there are individuals out there who got lucky to have recovered from such substances, I cannot rule this out 100%. But clearly there is no convincing track record and it is pretty much like playing Russian Roulette.

I do agree somewhat with the last part, some regimens are dangerous and some people did got worse from regimens although if you suffer severely from PFS you will take any chance to get better.

Bottom line, referencing all these “recoveries” is worthless in my opinion. Yeah, there is a chance of natural recovery mainly for those with mild symptoms and those who have not yet been suffering for long. But it is not something we have much agency over. It will either happen or it won’t.

These recoveries are very important and we can learn more from them than any study about PFS untill now has provided us in my opinion.

I think the whole discussion here is a result of a misunderstanding. I doubt anyone denies natural recoveries. They clearly exist. What doesn’t exist is a clear track record that any treatments lead to “recovery”.

Sure. But I’ve seen some treatments help multiple people with PFS.

Anyway, in the end I believe people who say they recovered here and elsewhere and I see no rational arguments or evidence that they did not, atleast not for the vast, vast majority. I would also like to remind mods that many new PFS victims come here to look for hope and a positive community. I respect you gusy doing your job, I acknowledge it’s not easy with something like PFS. But I hope you guys will be more positive, not only for the reputation of this forum but also for yourselves and the people who are reading here trying to recover from PFS. One thing is for sure, negativity hasn’t cured anyone.

Edit: (since my account is restricted and I can only post a couple of messages per thread)
@vkg1

So your talking about false hope right? Ok let’s talk about false hope.

Massive projects researching PFS is unrealistic unless we have some billionaires in our midst that can fund it. The medical community could not care less about PFS even when we throw a couple of millions at them, that’s still nothing in the medical/pharma world. The truth is we are on our own to find a way to get better.

Thinking Baylor or any new study will provide us with the cure is the biggest pipe dream.

@airforlife I didn’t see any facts from them besides a conspiracy theory without any hard evidence itt. And I respectively disagree that most recoveries are fake.

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False hope is worse than no information at all as it breeds complacency while life ticks away and overall situation gets worse and worse. This community’s principal (and tragic) mistake has been overestimating the potential of home remedies and underestimating the severity of the condition. Now there have been many suicides, failed families, and generations of hopes and dreams lost. We should have driven umpteen studies over the last 15 years and been sitting with a clear understanding of what PFS is by now. Instead, we went to our happy places, ate some herbs, and now, like ground hogs day, sit the larger part of two decades later squabbling about stupid shit while showing no progress.

This thing needs to be taken seriously and it needs to be tackled by professionals. We and only we can make that happen. It should essentially be the exclusive focus at this point.

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For that it’s worth, the three believable recoveries I can name off the top of my head (Chi, Moonchild, Towm8er) all mentioned positivity as an important part of their recoveries. They also all mention diet and exercise. It takes an iron will, stoic mind, and superhuman determination to beat this. That’s probably why only a few can beat it.

There are also 2 saw palmetto guys who I believe “may” have recovered. Kemangd and flamingpie (based on a convo I had with him back on SolvePFS).

Ever hear of the law of attraction? “where thoughts go, energy flows”.

Also, being positive builds morale, and maybe if we are more positive, we can be more successful in our careers, and make more money to donate for the science.

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@airforlife respectfully there are way way more than 3. An interesting project might be dig out the number of convincing recoveries and use the data on this forum to calculate accurate stats. The three mentioned above are the most well known as they were prolific posters

Also I think arguing amongst ourselves is probably even more counterproductive

Out of curiosity what treatment did zitzman prescribe to you? He is very highly regarded

If this is the doctor you are referring to then you know that he says that its likley that no-one will make a study for us because of the ethical and economic obstacles is to big.

So if you guys want to honest about our situation then be honest about scientific research will not happen in the near future. Even if we make youtube videos

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Can someone transcribe that to English??

I just replied to Khera from an earlier email he sent me and asked him about the 2nd part of the genectic study…Waiting on a response…

Impeccable timing. I’m at a loss for words.

Aha ok, he means that the treatment he suggesting is impossible to do together with controlled studies, am I correct?

My doctor in Sweden tries to contact him but he hasn´t responded to his e-mails.

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@Das, theological debates about miracles of mind over matter and legitimacy/illegitimacy of recovery claims are tolerated; however, attempted character assassination after putting words in my mouth will not be. I ask you again to not conflate anyone’s skepticism of recovery claims with calling them liars. The only person identified as a liar so far was the person who isn’t even a member of this forum who had enough moral character to admit to what they did.

have no idea what you are referring to in above

point i was trying to make earlier was Im just confused as to why you are so keen on discrediting recoveries…bizarre mindset

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I totally agree with you about some people here. bizarre is the right word for it.

There is so much wrong with this posts…

  1. People fake stories on the Internet all the time. It is incredibly naive to take everything at face value. If you require proof of that then you probably also believe that friendly Nigerian guy who sends you e-mails asking for your help in cash. But, of course, there is proof of actual cases where people admitted to fake stories on various Post-Drug Syndrome forums. Go search for Urecholine on the PSSD forum and you’ll find an example of someone openly admitting to it. It is not difficult to imagine that others do the same without admitting to it.

Your point is nonsense. It is both rational to expect that some people will fake stories and people have actually admitted to it.

  1. Yes, people recover, while “actively” doing X or Y. That does not mean X is what made them recover. Correlation is not causation. When many people recover naturally doing nothing, and most people do not recover doing X, then that one guy who recovered while doing X is likely recovering natural, too., and not because of X. There is no substance with a proven track record in treating PFS. People have tried to “learn” from recoveries for 15 years without tangible results. These recoveries are likely natural/random, and some are probably fake (see above) or scam attempts.

  2. It’s cute that you care so much about the reputation of this forum. We are absolutely fine if people who think like you do not like our forum. This is not a place for quackery, delusions, anti-science talk, blind hope and people who cannot deal with a critical thinking and a healthy dose of skepticism. This place is also not negative towards new joiners. In fact, most new people who just came off the drug receive the positive message that they are likely to recover (naturally). But if you feel this place is too “toxic”, too “negative”, “does not contribute to a positive emission” and has a “bad reputation”, and if you don’t agree with the mission of this forum to initiate awareness of and research into this condition, you are free to leave!

That’s it from me. This is going in circles. It is clear you want to keep believing that you will find the holy grail of supplements one day and will ignore everything that goes against that, because you are afraid to face reality. We will see where you are a couple of years from now. Maybe you will be wiser.

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righteo, great post, super helpful

were all screwed, recovery is impossible and any recovery is actually a scam artist who perversely enjoys attracting attention on an obscure forum of a rare condition that most people have never heard of

Lets instead turn our attention into convincing some scientists that it is worth their while, financially or otherwise, that spending their time researching a disease whose main forum has 4000 people is a good idea. Cancer and the Covid vaccine will have to wait. #delusional

to revist @greek initial question, a month later I have no idea what people think the point of this forum is

My view is that its first purpose should be a plave of support where ppl can discuss symptoms and educate each other on ways our symptoms can be managed

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