A letter to you, forum

General Discussion
#147

@pvdl your sole contribution to this forum is either to a) claim cdnuts is a fraud or b) Claim recovery is impossible

Re A, I agree that he probably trying to monetise peoples desperation which is highly unsavoury, his protocol is basically a how to of “optimising health and hormone levels” I have no doubt that this will help people with our condition, if not a silver bullet. I don’t understand why you are so desperate to attack him, why do you care?

Re B, Simply incorrect and unhelpful. If you read forum enough you will uncover a new one everyday. I personally know someone who has recovered

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#148

Emphasis mine.

Utter nonsense. But if it makes you sleep at night, I wont try to talk you out of this perception.

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#149

you are totally entitled to have an ultra negative perspective but it’s probably best for everyone else if you keep it off the forum

  1. To repeat I know one individual personally who recovered over time, I have been in contact with multiple others who have had significant improvements, some fully recovered

  2. For your own benefit, It wouldn’t take a genius to realise that if you have convinced yourself recovery is impossible, you probably wont recover

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#150

Me too! They were all within the first year post-drug. Most of them the first 6 months.

Thinking this condition was impossible didn’t stop anyone from getting hit with it. Guess it works different in the other direction? And that’s not to say that it’s entirely impossible. Many of us are moving forward with the expectation that there is a way out. Staying positive is entirely different than being delusional about the current state of affairs.

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#151

agree, my point is attitude and mindset is a v important factor in recovery from any type of illness or condition

Theres a whole science behind this and its the single explanatory factor behind the nocebo effect

in many cases dwelling on our situation can enhance depression further

The one thing I do know about this is that recovery is painfully slow and not in a straight line. Approaching the long path ahead with a positive mindset makes the journey more bearable than dwelling on our misfortune every day

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#152

I’ve searched this forum and seen many recoveries here and even a lot outside of this forum. Probably around 100+ and that was without searching too much.

Saying nobody recovered is a lie and will only damage yourself, being positive is detrimental with our condition.

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#153

Yes it’s very easy to find 100+ recovery stories. Be sure to not exclude those within their first 6 months to year post-drug, those who describe very mild symptoms or are unclear about their symptoms, or those who appear out of thin air to claim recovery after years, then disappear just as fast. Don’t forget about those who are on their fourth or fifth recovery.

There was a regular poster at acne.org (username: Babis) who described impotence, severe fatigue, and low mood for over 5 years after a course of Accutane. He was diagnosed with clinical hypopituitarism according to blood tests (low LH, FSH, CRH, TSH) and later said that he was much better after finding a proper HRT doctor. Was it the same as what the rest of us are dealing with? It was an obvious fix to an obvious problem that was likely triggered by his use of Accutane IMO, but it could be added to the list to make it 101+ recoveries.

A little harsh to compare skepticism of the majority of recovery claims to dishonesty.

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#154

I’ve gotta agree with this. Most of the recoveries i’ve seen and talked to have been general upwards trajectories. The guys crash, and within about 18 months to 2 years (usually living healthy, taking some supplements), they’ve mostly recovered. But during those 18 months to 2 years, they’ve had forward progress, where noticeably over time things are improving. That builds momentum, reinforces more positive behaviors, etc. That is entirely different than being in the shits for 2 years, 3 years, etc with nothing changing or even getting worse. I’ve gotta agree that the majority of recoveries on this forum or anywhere else, these guys’ bodies were most likely bouncing back regardless.

edit: I can think of 2 exceptions i’ve personally talked to. a guy from the UK who’s recovery took like 3 or 4 years from bad brain fog and sexual side effects (marginal improvement each year) , and a guy that had really bad derealization and brain fog (no sexual or physical symptoms), and it took about 2 years or so to start to notice substantial improvements. From when I last spoke to him, he’s just about recovered today and lives a mostly normal life ( i think 7 years later). Still has to use various medicines to control depression and anxiety from what I understand.

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#155

Oh so you’re saying most users who say they recovered are liars or we should just dismiss them because their symptoms weren’t harsh enough in your books? This way of thinking also reminds me of all the people who say PFS doesn’t exist…

This coming from a mod is quite disturbing too, you of all people should know being positive is important and that PFS comes in different forms with people experiencing various symptoms, you can’t just dismiss people’s experience because they had milder symtoms. Also nothing wrong with being sceptic but I believe the guys who recovered and there is no evidence that the vast majority were lying, 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. And friendly reminder, most people do recover after stopping fina.

I would also like to remind you that we had multiple recoveries this year posted on this forum from various users here. I believe our fellow users, you should know better because baseless scepticism is dangerous and hurtfull and the same as all the people who say PFS does not exist.

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#156

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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#157

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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#158

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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#159

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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#161

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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#162

another one…after 4 years and posted today

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

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#164

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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#165

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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#166

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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#168

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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#170

@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