As I understand, there are two main research directions now.
Melcangi supported by the pfs foundation tries to identify altered gene expression in different clusters identified by the Baylor Study to find out the most damaged areas and gene products to make a specific intervention there (downstream the root case).
He works with an animal model set under finasteride for this. The pre condition is that all the rats develope pfs. The altered methylation patern of 5ar genes in human cebrospinal fluid already diagnosed.
The pfs Network try to proof the AR overexpression root case hypothesis following the Baylor study conclusions. Working with human celllines at a human genetic institut. They try to make once an intervention at the root case, the problem upstream of all.
And try to identify a genetic predisposition and a biomarker.
Not to forget the decades of hormon paneels and hormon replacement therapy to straighten the hormone axis, as the first level classical andrologists treatment, which couldn’t heal pfs after all. If they could we wouldn’t be here!!!
For this the community paid between 10.000 and 50.000 € per patient, as I measured many permanent treatment protocols. The donation level for research is between zero for the majority and 50 € for a minority of all patiens.
One of the most depressing things about this situation isn’t even the condition itself, but the fact that 99% of patients don’t want to do anything constructive at all to get out of this.
May 2012 allready the hungerstrike of John Santman, pfs foundation founder and father of Randy who committed suicide after pfs and Kevin Mullay, the first one who went public with pfs, in front of the evils own company, Merck headquarters was supported by only a handfull people. In 2011 Prof. Michael Irving had first rised awarness to finasteride with an 11.000 finasteride patients review with 1,4 % with persistent sexual dysfunction. Media and TV had been interested in this unbelivible medical scandal but the pfs community, traveling across the USA 
for the next injection, let them stand in the rain. With an other patient community it would be a big party and finasteride kicked off the market. No one here would have heard than ever about pfs.
That is absolutely heartbreaking. Yeah, for some reason this community seems to enjoy complaining about the people who want to do anything to get out of this. John Santmann invested at least half a million in this issue. Where was the community? He gave half a million and started a charity with the infrastructure in place. All people had to do was give 50 dollars monthly.
10,000 patients giving 50 per month for 10 years would’ve given us 60,000,000 USD. We could have explored every pathomechanism of this disease. Every nook and cranny.
As more people hurt by a FDA and EMA approved medication and the modern inhuman pharma cartel and profit hospitals driven health care industry, as more people are open for quacksalvers, bunglers, alchemists and healthcare frauds.
And there is no money, no energy left for make things better. A modern human medicine, without the big money eating multinational pharma cartels. Back to innovation and development for the people in innovative companies. No pharma cartel - profit optimized - dinosaurs producing the next dangerous and useless poison for maximum profit against peoples health.
i think that type of inefficiency is present in almost all groups at all times. there’s ways to modulate that efficiency but even then you’ll never get a machine running at 100%
think about school group projects, there was always the bunch that never contributed (guilty)
哈哈，外国大学也有这种情况吗？我们称之为“摸鱼”（把手放在水里装装样子），我觉得我们应该振作一点，基尔的项目不是三个月就凑够钱了吗？我们做的相当不错。
我相信只要目标越明确，我们进展的速度会越快（捐钱也是如此）。
which part?
Let’s be honest, there are rare disease communities with 200 people who manage to raise millions. The key reason being that enough patients get extremely serious and make it happen. Now obviously our issue is controversial which complicates things. But we have weight of numbers compared to many other communities which helps balance the scales. I’m not even talking necessarily about 100% efficiency. I don’t want to detract from our progress, we have good momentum that we should be proud of, but we need to acknowledge that right now 99.9% of this community isn’t doing anything. The Kiel study was funded by approximately 200 individuals (many of whom are friends and family from the personal networks of the serious patients), if I’m not mistaken. In respect to your point regarding efficiency levels, that is shocking. Especially when you consider this has been an issue for at least a quarter century.
To put things in perspective, I did some digging and found that the PFS Foundation 7 years ago set fundraising targets of 25,000 USD per annum. Apparently, not even this modest sum could be raised from the community. There really is no excuse for this, especially when you had someone like Dr John Santmann leading the charge who was clearly deeply committed to this cause and obviously no grifter or con artist like so many others PFS patients enjoy drowning in money.
There’s no use lamenting the past. But we need to learn as a community and adopt a completely different attitude and approach.
Yeah I agree
I think we can try to implement new things to improve efficiency like incentive mechanisms of some sort
It’s certainly worth brainstorming. There’s an enormous group of patients to tap into. I don’t know why an incentive is needed to study one’s own disease but apparently this is the case. Otherwise it falls on the shoulders of a small number of people to try to move heaven and earth for this issue. I don’t see how this is ethical.
Either way, I’m glad more and more people are getting involved. I think this trend will continue.
The answer of every research or realy healing oriented discussion is: “I maneuvered some nougat pistachio pralines into my rectum! Do you think this will be the cure?” “Oh yes tell us if you will be recovered!” So it’s a hard work to try to acquire some more people for a serious way without Quacksalvery and insanity.
In most cases even a normal talk between pfs patiens sadly sometimes pssd patients too is aggressive interupted by the next injection or substance command. Without my german chat its sometimes impossible to have a normal conversation, not being agressiv attacked by sonething like a recovery guard.
“Shut up with your science please, I eat champignions now, I heard it is androgenic and rises my libido about 5,34567 %.”
Or people are totally desinteressted:
“Science brings nothing, awareness only decimates new pfs cases. My cock is shrunken, my balls are rosines but I inject testo and use viagra. So where is your problem?!”
Maybe a man in his early twenties. Is this a normal life?! Saying thank you Merck!
Will try to get the best paying job I can work hard and invest money. I do not know if I have pfs just yet only been three week almost 30 days and only have sexual dysfunction and Ed. But I hear everyone’s pain and voice and we should all work very hard to get this problem taken care of asap.