Just looking for some backup here… Tressless users have confirmation bias blinders on to this issue.
How can we help convince people of the risks?
I used to worry about nocebo. After first hand experience, I do not believe that’s the major issue.
While nocebo may affect some obsessive individuals, this is obviously a biological issue.
Personally I think these battlegrounds are pointless. Reddit is an absolute cesspool for group think and it’s going to be very hard to change these guys’ minds about whether PFS is real.
Show them the patient stories series - including mine if you want - where all of us talk about being happy, healthy, individuals before and in my case, not having even heard of ANY side effects, let alone persistent ones.
The better path here is to have dozens of PFS patients speak publicly. Pretty hard to deny or be a callous dick when it’s a real person breaking down in front of your eyes. I don’t think back and forths on Reddit will win this battle for us, sadly.
Oh, and research of course.
This isn’t a good use of your time.
For more than a decade PFS patients have been trying to push back against Reddit, youtube comments and Merck press releases.
You will not convince those people. You will get shouted down. You might be made to look crazy.
If you have energy to use to push back against this stuff, this is where to start:
Edit: agree with @Sugarhouse
100%. If you have the energy, and are sick of this shit, and sick of being told we’re all psychosomatic or delusional, the only way to fight back is to take small, productive steps. Come on the podcast and speak publicly. Put aside money for research. Join our advocacy group. Do the patient survey. Report your symptoms to your regulator. That’s the way we win.
I know it’s hard to ignore these people but they will always exist, sadly, and winning an argument with them will not help you get your life back.
Just yesterday I stumbled across tressless. Had not visited the sub in years.
Well, what can I say? I had to close it quickly because it reminded me of how stupid I was 2-3 years ago, constantly looking for positive stories about Finasteride, just to convince myself to take it.
Don’t waste a single minute of your time in there.The hair loss communities are by far the most toxic places I’ve ever seen on the internet.
It can be helpful if you are able to appreciate that almost none of this is personal. The reason these people deny PFS is because they have some insecurity or fear that has nothing to do with you that is clouding them from evaluating the risks of PFS with objectivity.
If you want to spread awareness of PFS on Reddit, it is possible, but you have to have a deep understanding of the underlying psychology of those you are trying to persuade. If you are rightfully angry about what they are saying, that anger will similarly cloud your judgment and make it very hard for you to be persuasive.
Kevin Mann was apparently abused by his brother when he was younger which fucked him up and he’s taking out his pain on another random group. It doesn’t make it respectable by any means, but it shows that it really isn’t about us.
Its real simple. PFS is so rare that normal trials didnt detect it. Same for certain vaccine side effects from Astra Zeneca. The difference is that not many men are on 5AR or Androgen-Inhibtor and no one gives a shit about couple of hundred people being screwed for life. You could even argue that finasteride is still a good drug, because it saves hair and fights prostate cancer for millions, compared to that we are colletral damage. The only problem is that PFS should be a recognised side affect and every man who is willing to take it should be consulted and informed by a medical expert.
It doesn’t fight prostate cancer. BHP is not cancer.
Even from a BHP point of view it’s quite poor and the best urologists opt for other treatment today (esp the ones who acknowledge PFS).
Hi @hopeless94
I noticed you haven’t completed the patient survey. When you get a chance, could you please help out our research efforts by doing so?
Thanks!
I haven’t had time to fully read and respond to all the comments here but I will soon.
Just need to vent quick because the Tressless guys are saying I’m either a:
I find it very frustrating, but I’m done engaging with them for now.
It’s entirely possible some here are mentally unstable, delusional and / or psychotic. Some may also be experiencing “symptoms” from the nocebo effect. BUT, that doesn’t mean it’s the case for ALL of us or even most of us.
I know that first night it was like a switch… substantial decrease in sensitivity, followed by other physical changes.
They say none of our experiences are physically possible and that the ONLY answer is psychology.
They argue that DHT is only meaningful in adolescence and has no effect on physical sex organs as an adult.
That MAY well be true… BUT, they forget that a decrease in DHT causes an increase in free T which is aromatized to estrogen… low inter-testicular T can cause atrophy and raised estrogen levels can lead to gyno.
They forget that while blocking 5ar primarily functions to reduce DHT, it also messes with other neurochemicals…
Generally, they only focus on the part of the mechanistic model relevant to them and ignore the rest.
They also argue that this can’t be possible because there would be thousands of doctors saying not to take it… but my OWN GP did say not to take it because it could cause “chemical castration”.
They argue it would have been seen in initial trials, BUT the experimental design suffered several flaws:
The lack of data collected after cessation. The type of data collected. Dosage pattern limitations… like those who stopped and then started again etc.
The limited sample size… yes it was a massive sample… but if you take 100k people and track them for 3 months, and observe that nobody gets struck by lightning, it would be foolish to conclude humans cannot be struck by lightning.
That’s what’s happening here… it’s called a sampling error.
The large number of homogenous anecdotes and reasonable mechanistic explanation paint a compelling picture.
I don’t understand why it’s so rare or why otherwise healthy individuals like myself respond negatively. I’ve never had strong, masculine secondary sex characteristics, and I wonder if that’s a potential indicator of androgen level / receptor abnormality.
Either way, their relentless resolve is making me question my own reality. I find it distressing, and I need to stop engaging for my own sanity.
I can easily tell my testicles have decreased in size. TMI, but rubbing the tip used to be super ticklish, now I barely feel it. Gyno is subtle, but noticeable.
If it was mental why did it take 5 months on the drug for me to experience these things?
I’m torn because I don’t understand why this happened to us, but not SO many other men.
For me, I think I may have been fine had I just stayed on the drug. I stopped because my dosage ran out and I needed to wait 5 days for the refill. Then sides hit hard.
So… those guys romanticize the idea of large scale clinical trials. They are still limited, and they don’t paint the whole picture. The 2% with sides represent uncertainty in their model.
Regardless, the opportunity for a person to misreport subjective experience is the SAME in and out of an organized clinical trial… so why should our accounts be discounted?
I want my hair back, I want the sides to go away, and now, I want to stop feeling like I might be crazy…
I even found a paper written by a medical doctor stating the only explanation is the rare occurrence of group delusion.
A large scale trial based on subjective experience is still just a collection of anecdotes…
Anyways…
I understand it’s a waste of my time. But I actually thought I might be able to help some people.
It may not matter though… it’s like telling people not to take a walk because they might be struck by lightning.
Apparently it’s incredibly rare and we’re just the unlucky bastards left to deal with it.
I really appreciate the positive comments though guys. I’m glad we have a support group for this.
<3
Unfortunately so, I know you tried to do a good thing, but those guys aren’t going to listen and it will just be depressing and exhausting for you would be my guess. Better to try and use your energy to work towards something positive. I hope you’re not having too hard a time, try to not concern yourself with those negative reactions.
It’s not that rare.
I remember discussing about it with my GP, who whas against it. I told him sides were rare and would subside once stopped the drug, he replied “no it’s not that rare and sides could stay with you for a very long time after quitting the drug”.
I understand it’s a waste of my time. But I actually thought I might be able to help some people.
Can’t save someone from themselves.
It’s entirely possible some here are mentally unstable, delusional and / or psychotic. Some may also be experiencing “symptoms” from the nocebo effect. BUT, that doesn’t mean it’s the case for ALL of us or even most of us.
I wanted to point out that as moderators, we pick up on maybe a handful of such posts a year. This nocebo garbage that seems to have been perpetuated even more in recent years is mostly a result of these type of groupthink cesspools.
Link them to the research here, the patient stories, and move on man. It’s not worth the time or the additional stress. The only way these people’s minds will be changed is through hard science, and that takes all of us making small, collective steps together.
Sugarhouse made some good points. Link them to our videos, or make one yourself and spread it around. Think about if every active member on this forum took 5 minutes of their time and either:
a) made a 5 min video for the PFSNetwork page
b) shared links to the existing videos on Reddit, Twitter, other platforms
or C) simply commented and liked the videos on Youtube.
Many active users have already done their part of commenting and liking the videos, but my point is these are super simple and fast ways of spreading exposure.