research. oh well im just sorry as someone who studied science in academic ways ive to say that if you wait for a cure by “research” youre gonna die waiting, not to be harsh
harsh is the reality, we’re alone in this and no one cares bout zombie limpers as far as they still make lots of money and are functional. and well, they make and they do
and it just bumps their desire to still make that, those really interested in our condition dont really matter then. it would contradict the active “force”, if you know what i mean
not too hard to understand how this world works
welcome to hell, bro
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Man some of you lot are fucking nuts.
So instead of finding a mechanism behind PFS, establishing it as a legitimate medical condition, getting reparations, support and possibly a cure - you would prefer to do nothing, wither away in obscurity and whine about how unfair the world is.
By the way how is your broscience recovery going? Not particularly well from what I can see. Let me know when the penny finally drops.
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And so your solution is…?
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Dude seriously.
Because of people with a shit attitude like this, we’re gonna die waiting alright. Thanks a lot.
Can you seriously not see how every little contribution will compound. We’re waiting because of the massive inaction in our community.
Have you done anything at all to try and help? Anything?
Don’t you get it. WE must do it.
Get up and start doing something.
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I’m sorry but this message is just so discouraging that it makes me physically sick. I don’t know which college or university you attented but they definetly completely failed, if you left with such a negative attitude about the capabilities and motivations of the global science community. Most of them are not evil monsters like MERCK, instead there are a lot of people out there who want to do good in the world. But how should they do anything about PFS if they have never heard of it?! That is why we need to wake up - people need to stop to hide in the comfortable anonymity of online forums and need to go out in the world, show their faces anf tell their story.
Every great innovation and change in the history of humankind was initiated by a few dedicated and motivated people - let’s all be part of the solution and not the problem
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Yes, I am a “middleman” for spending hours of my time gathering videos from patients to make a compelling case to Movember. You talk a lot about your expectations and what a shame it is when they are not met. My expectation is simpler and less self-important, that people in our community treat this issue with seriousness by taking action and do not damage the worthwhile efforts of others. I have never ostracised anyone for venting, I have ostracised people for saying there’s no point doing anything or investing in research because it’s hopeless. If my occasional posts on this subject bother you on such a visceral level, then l I suggest you ignore them and stop commenting. You certainly won’t be costing me anything worthwhile.
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And this and other conditions are already recognized. But that just move a fucking millimeter in therms that: people don’t give a fuck.
People got mad with my comment, what the fuck. Reality hurts I know.
Point is, the researches that has already been made points to nothing and only confuses more the community. It’s not and will never be reliable since it’s reports are all anecdotal and subjective by nature. There’s no way to measure anything with that range of symptoms and intensity.
About awareness, I’m very active on this and literally 100% of the people around me knows my suffering. I’m gonna repeat: no one understands this shit, really. If you tell someone you can’t feel emotions and/or just are asexual they’ll just up their eyebrow and say “well fuck it, weirdo”. Because no one get it or care about it. People are living their lives.
About donating, I did already, not that I believe that it will do a shit. Just like it hasn’t since internet became acessive and we the lobotomized limpers came out with our rants.
For what what to do: I don’t know, do you? I’ve changed my whole lifestyle, I’m in the best shape ever and no supplement will help me, it’s just another risky thing to try.
And to freeze: welcome to hell. Because that’s what it is. You could ask Dante how to get out of this shit, and even him wouldn’t know.
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I know this situation affects us all deeply but let’s try to keep it civil.
As far as the conversation goes I think all the necessary points have been made.
Again, thank you to everyone who has donated to the PFSN so far, and anyone who has requested others, friends, family and fellow patients, to donate as well. It would not have been possible to organize research efforts without all of your help.
Let’s keep pushing the situation forward together in all the ways that we can and stay hopeful that we can make a change.
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“donate their limited funds to help out a future generation of young men.“
Not gonna lie, reading this just makes me want to die. What makes you certain that a future generation will benefit over ourselves? Im a severe end case and seriously need some hope… Legit question. Not trying to cause a fight.
Everything that needed to be said about this has already been said. We don’t need more doomerism. The crux of the problem is that despite the tiny amount of scientific effort, some people are willing to make baseless predictions about how there won’t be X, Y, Z in our lifetime. This is equal parts ignorant and irresponsible given how on the edge many in our community are. We’re investing in our own future, not that of future generations. Come to me with bleak prognosticating when we’ve invested north of 1-2 million USD in this issue, not before. Thanks.
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To some degree you’ll be able to find enough bad news to feel more miserable than you thought possible if you don’t vet your sources well enough. With the greatest respect to anyone saying what the time scale will be, the truth is they don’t know.
Any timescale isn’t fixed. If we could say it’ll take 10 years of research at the current rate of progress, that would assume that we don’t build on other research breakthroughs that may take place. There’s a timeline where our research finds a tiny thing that then focusses the scientific world in our direction and things accelerate as scientists realise the potential for what we found.
There’s a timeline where Elon Musk develops PFS and throws billions of dollars at it. We might even be on it.
What’s important is that getting PFS today isn’t as bad as getting it yesterday, because we are making progress.
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Erik, you are right. Regardless of what I think, I don’t want to add any doomerism. Post withdrawn!
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That post wasn’t my best work. There is always hope, but perceptions just make it difficult to raise funds.
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Yes, look - people injecting hcg for three decades now to cure pfs. And it definitely doesn’t cure the severe sexual sides, nore mental and physical sides permanent for all. (Finasteride was developed in the eighties, knowing the poor hermaphrodites in the Caribbean and their destroyed manhood very well. 1994 proscar, 1998 propecia was sh… out on the market.)
After 30 years all still believe in hcg. And the community is going to believe the next three decades in the same hcg, allopregonolon, enclomiphe, proviron and Testogel.
For research and a cure the community is now panicing about the time frame. Even three years seem to be to much to invest in the honest way to a real recovery.
Why hcg, allopregonolon, enclomiphe…gets 60 years and millions of money without being a final cure and serious goal oriented research gets some 50 dollars with a three years time frame. And angry comments.
Goal oriented research and recognition makes hcg better available as without recognition and ICD 10 entry. Nobody wants to take your hcg away!
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except we aren’t doing research in an “academic” way
we are conducting it commercially similar to biotech companies that rapidly find new solutions
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