Sorry friend but I need support about the person in a similar condiction. For me is a very important not feel alone in this battle.
2 Likes
I respect that and understand that, I truly do, you have all of my support.
That said, this forum is organized in different topics for a reason.
2 Likes
Ok my friend sorry for this. I think all person a make a survey of forum. I make a survey in one session. A make another survey of melcangi in italiy. In Italy melcangi at the finish of this year make a project of allopregnonalone and the guys of forum post finastride italia make a battle legal for Propecia in Italy. And the next year stared a project for new session of tested genetics whit University of Trieste in italy.
Wow Italian PFS sufferers are very organized !
Guys, tone it down a bit!
I think everybody should take the survey, irregardless whether they understand the usefulness of it or think a cure is likely. We already know some scientist who find the data valuable. And even if a cure is difficult to imagine for some, any progress in the science can also help with finding symptomatic relief. That alone makes taking the survey worth it, and it is such a small effort to take it.
Nevertheless, this is no reason to insult people who won’t. Personally, I think people that won’t are holding the community back. But insulting them is both against the rules and rarely a good tool of persuasion. Let’s leave insults out!
1 Like
Seems to be so.
I believe quite the opposite, I think forum admins should show their teeth a bit more and whip some members into submission, start locking accounts until they actually do the survey, because apparently having good faith in fellow sufferers to take responsibility, no matter how relatively small the effort, is very naive.
230 submissions in the survey that has been taken the most, is a depressingly low number. I posted OP about 4-5 months ago. Let’s say we got about 30 survey submissions in a timeframe of 5 months.
Now let’s say it keeps growing at this pace more or less.
We will not reach 1000 Fin survey participants until the year 2031.
Now that I find unacceptable and extremely disheartening.
So either we figure out a way to force members to contribute or lock/lose their accounts (and through this method I predict we easily double the amount of participants) or we make the survey more easily accessible to people outside the forum without risking a reduction of validity of the data and its participants.
Clearly the way things are now there is not enough progress. I just cannot imagine anyone disagreeing with me on that.
I have zero patience or respect for forum members who willfully disrupt this process because they are lazy or just plain dumb, or go on narcissistic powertrips to inflate what is left of their fragile ego by forcing more intelligent forum members to make strides to facilitate their participation.
I have spent about double the time posting things on this very thread then it would have taken any of these losers to just shut the fuck up and take the survey like they fucking should.
It’s possible that some people unconsciously don’t want a cure because it would remove an excuse to sit and be victim, just play video games and conceive herb cycling routines for rest of life. Being cured might force some to confront other non-PFS-rooted problems, such as pre-existing low life achievement and generalized feelings of failure.
3 Likes
Wouldn’t surprise me one bit.
Which is 101 hypochondriac behaviour and only works into the hands of the doctors that deny our very situation.
If you take into account that this is a forum mostly consisting of young men suffering from conditions that are unaccepted by society and subject to potential social ridicule, you have a psychological recipe for narcissistic compulsive liars to be born. There is no doubt in my mind that some of the alternative medicine recovery stories are simply written by people who were just incapable of accepting their condition and just told themselves they defeated it just to have a better quality of life, spreading all kinds of lies and protocols in the process that have no basis in reality whatsoever.
Admittedly, this is quite extreme speculation of a worst case scenario on my part.
It’s just astonishing to me that admins of this forum go through enormous lengths to provide us this platform and countless forum members just actively and proudly shit all over their hard work.
1 Like
Well, it’s probably better for quality of data that hypochondriacs don’t take the survey anyway. But another problem is that anyone coming here who suspects they might have PFS is liable to get the impression that it’s just a bunch of nuts. I would think that if my symptoms were only a little more subtle. For example, if I was a woman and therefore could still have sex (since doing so wouldn’t require arousal) though I didn’t enjoy it, then I would dismiss PFS/PAS/PSSD out of hand upon witness of the victim mentality, sophomoric medical advice, and general in-seriousness about actually doing anything here.
I’m in favor of posting limits for those not participating in survey.
1 Like
Guys we must unite communities and we must try together to finance a study. Only by joining forces can we take our life back. Polls are good everyone should do it … But we need a study. Let’s unite the Italian and American communities, find the money and do the study. If we stand still the solution will never rain alone from the sky. We must join forces and efforts. Please. There are no other solutions we must join efforts
1 Like
It is refreshing to see some adult, thoughtful posts in this forum. Thanks for the posts, @Wintermoon, @vkg1, @Preoccupato.
I will say that for a period of time I struggled with the brutal reality of this condition. Which meant a long period of denial. Ultimately when I accepted what had happened, I felt more free and able to confront the situation. It is actually easier to disbelieve it. However, this will keep you trapped in your mind and you will never deal with the situation as it actually exists. That is a very dangerous thing and should be considered carefully. We are here because we broke out of the mental prison. Now we need to stop fighting and get ourselves out of this mess.
Nobody quite has an answer yet but it is possible that if we uncover what has happened, we can then at least know where we need to explore next.
1 Like
The answer is getting unified behind making research happen. And then DOING. Making it happen. That’s the only way out. Most everything else is just enablement of escapism and denial, which is net negative.
There’s nearly nothing to show for the last 15 years beyond heaps of $200 bottles of herbs bidded up on Amazon when some teen told everyone he got cured from popping one and only one brand of herb pill.
1 Like
I just took the survey right now. Feeling proud of myself 
10 Likes
i took the survey where can i see the results
Hate to be an ass, but lurking heavily on this forum for the past week and a half , there’s only so much that users can do than chip in donations and filling out freakin surveys - and it seems like you are a big contributor to that. Where will that get us ?
I can’t speak for everybody but I’ve been in this bullshit 3 weeks almost and can only imagine what people who go on 3+ years are feeling with this.
Even if all 6 k users on this platform fill out the crap theres 8 million Fin scripts written JUST in the U.S. no ones gonna get these people the exposure that’s needed for meaningful treatments to highlight the negatives of this pill. And honestly sitting on your ass twisting your thumbs isn’t going to get people anywhere. My two cents
At the end of the day filling out surveys and donations will still get us further than actively discouraging people from doing so.
6 Likes
Don’t then.
Be constructive, helpful and inspirational.
4 Likes
I started this thread a long time ago, in a sort of state of emotional panic in a time when I wasn’t in my current position as a moderator yet. So if there are any new members to the forum, who are lurking and reading all these old threads, I want to take this moment to emphasize that I no longer feel so frantic about these things the way I did before, and I am pleased to inform people that the number of participants has since more than doubled.
It’s been a slow process but I think that over four hundred results is by no means a small number and hopefully already allows for somewhat accurate patient data assessments.
As I understand from the other guys in staff, it’s already been pivotal in attracting interest from professional researchers. So there are really good things to be said here.
As an advice in general, a lot of posts and threads on this forum are old, and may be written from a high-octane energy that may be recharged in new members in a more direct or bad way. At the time I was still emotionally deep into this whole situation and I didn’t really realize how some of these threads can really linger and re-emerge in other people’s experiences, when the experience of the topic has sort of passed or changed for myself. This is also true for a lot of other members’ posts and threads in general.
Of course I would still love to see more participants and I hope many more patients will be willing to take the time to contribute. I hope those patients who believe their cases to be ‘too different’ or are ‘afraid of skewing the data’ will openly discuss their feelings and doubts, because the survey is designed for that sort of thing and it is really kind of unnecessary to feel that way.
Because the more data we have the better.
But the time that I felt so on edge on this matter has passed and I don’t want to spread any more stress and agitation, so I am unlisting this thread for now. Thanks to all who participated in the discussion.
1 Like