Well, how long does it take to run a doppler test for one person? 20 minutes? To my mind 25 x 20 minutes doesn’t equal 6 years. Sadly there is nothing apart from that from this study. I’m personally not a biggest fan of conspiracy theories but even the most optimist person must feel that something is off. I really HOPE there will be a second part with real new findings…
But the biggest problem is that NOBODY here knows if second part even exists. There is literally 0 transparency with this study, between us and the foundation too. Some people have written something like “How dare you critize foundation if you haven’t donated 1000$ or smth?!”.You don’t have to donate anything just to point out obvious problems, especially if the topic concerns you. Moreover such things discourage more people from donathing if they will have no clue what will be done with their money.
I think the call for transparency is just common sense. Everybody here deserves to know what is going on. “Nobody knows anything” state contribute to mental worsening of many people as they see no hope (2 suicides in this study). Even rxisk and Dr. Healy tend to write emails when something is going on.
To add something hopeful, there is a chance for a really comprehensive PSSD study in Egypt, which might need help with funding. I hope it will turn out to be true!
I think it is common sense to think that members of PFS community would want to know what’s going on and the lack of knowledge would obviously be distressing. What is foolish is thinking that complaining on PH will help you achieve that goal, unless somebody else here decides to solve your problem for you. You’re much better off posting something that says , hey, this is a really important issue to me but I don’t know what to do about it. Does anybody have any ideas about what we could do? Otherwise, demanding that you have a right to something, when that right does not actually exist will hurt you. If I were in a position to help, I would be much less inclined to do so because people feel entitled to the time and resources of others without even giving a hint of gratitude. Even when I offered some valid ideas about how somebody could try to figure this out, nobody wanted to actually do anything and I was insulted for it.
What would a replication of this study cost? Think we could find ~50 people to donate $5k each or something similar?
For those who may be interested, I propose that we follow a path of individual research, together with local doctors/research centers, and that we later share our results.
I have made a good number of studies and tests regarding changes in penis structure post finasteride.
In my case, it took me 2 years to realize that something had changed in my body at that level. The denial of the urologists I saw during those 2 years contributed to the problem.
It was only at the third year that a doctor accepted to perform a doppler and a rigiscan on me, and voilà! The results were showing clear abnormalities.
For those having persistent mechanical problems in the erection, one solid hypothesis is that the drop in DHT produced by Finasteride weakened the natural defenses of the penis. Even a noctural erection that you didn’t notice may have damaged part(s) of the tunica albuginea. Or while you were trying to masturbate, the penis got hard-flaccid (=contracture of the smooth muscle) in different areas. Or micro-calcifications affecting the normal blood flow.
These are not natural events in young people. Only Peyronie would look more natural, but for a Peyronie, you would need to display a plaque, which was not my case (no evident plaque).
It takes time for hard-flaccid areas to heal. Some other problems, like damages to the tunica albuginea would need other methods to be solved.
These elements may explain the persistence of erectile problems in many of us.
So keep asking your urologist to have a doppler and a rigiscan test. Don’t hesitate to tell them about any irregularity/abnormality you may notice. Other abnormalities will be invisible for you, but many of them will show up in the tests.
In any case, I am confident that -once we have the right diagnosis- we will be able to find solutions. At least this is what I am trying to do myself.
Actually we do have the right to get answers…If an organization collects money from the public under the name of our condition, then we have the right to get answers, and this right is not to be questioned… What would you think if the WHO started a campaign to collect money to help children in Africa, and the Public donated with (UNKNOWN) sums of money…Do you think that those children have the right to ask where the money went, if they didnt get any help?..Please answer me this question? DO THEY OR DO THEY NOT?
Gratitude is something earned and not simply given becuz they said they would do or help, or acted on something 20 years ago…The foundation clearly has already given up, and they should step back, and allow members from this forums to take over…Yes Dr. Santmann lost his child, and its tragic, but this happened some xxx years ago, and time heals every wound…We are the ones dying and suffering, and no time can heal us…Our interest to move this forward is much greater than some guys, that doesn’t even have PFS…Even my closest family members cant understand what PFS is…I would never assume they would fight like someone who has it…Life when you are healthy just continues , and you forget about the suffering of others…Its how the human brain works.
No they don’t. They have a right to ask, but nobody is required to tell them. Just because your example involves sympathetic children in Africa, it doesn’t change how things work. The WHO is also an NGO so it isn’t even structured like a non-profit.
This is an absolutely horrifying thing to say. He chose to do this to honor his son. He doesn’t have to do anything for you. I’m mortified that you said this and desperately hope he never sees this. If time heals all wounds, why are you being such a psycho about PFS… honestly. He lost his son around the time that you lost your sexual function. Compare your reaction to his.
I literally never said this. In fact I strongly said the opposite many times. Anybody has the right to ask or say anything in the US, it is robustly protected by the First Amendment. You just don’t have the right to receive answers. If you get them, it would be completely voluntary. I tried to explain to you how you can be more effective in how you make your requests but you called this propaganda.
Both of you, please don’t respond to my messages anymore or refer to me on this forum and I will do the same. If you don’t respect my wishes I will at least mute you and see what else I need to do.
Remember 20 years ago Merck had a “hit list” of Doctors they wanted to “neutralize” who spoke out against Vioxx.
I don’t think its unreasonable to think that Merck are still up to their old tricks and are trying to discredit PFS as a real condition by either paying off or trying to silence Doctors who investigate PFS.
So if your house was burnt down, and i went to your neighborhood and collected money in the name of helping „Frustrated“ build a new home, and then vanished , and gave you nothing…
You have to thank me nonetheless for „doing something“, and you have no right to ask me about anything…LOL just LOL…I dont know where you live, but in Europe ppl go to jail for collecting public money, and using them for other stuff other than helping others.
They were up to tricks in the pas. They employed some of their tricks. Some of them worked, others did not. In some cases it was gray area. The truth is that email was probably taken somewhat out of context, although it is impossible to deny that somebody at Merck was a psychopath.
Merck barely cares about Propecia anymore. They’re planning to abandon a lot of the rights to older drugs in the next year, and Propecia and Proscar are most definitely included there. They really should not be used as an excuse anymore. As I have said in the past, they have a few loose ends to tie up and they will have almost no reason to care at all.
Are you saying that Merck won’t be able to be sued if PFS becomes medically established by Merck has abandoned their rights to it?
So Baylor took the foundations money and ran? There’s no way $138,000 was spent on this study. You know you’ve fucked up when the patients you are studying kill themselves.
They may have a legacy liability, maybe not, but the statute of limitations for this case have lapsed. It may change if some new evidence came out, but I don’t think so. Even if that weren’t a problem, no lawyer would be able to gather enough plaintiffs at this point to make it worth their time and money for the pursuit to be profitable.
For all practical purposes, at least in the US, legal recourse is no longer possible. Europe is a different system and my understanding is that it tends to be more sympathetic towards consumers vs. businesses, but I don’t think the awards are as big. Although I know much less about how things work there. I’m willing to admit what I don’t know which is apparently a rare practice here.
I’d love to stop answering all your messages. Just please stop brainwashing people here in the forum. It’s not your job.
Actually, $138,000 is pocket change in science. It’s only enough to support one graduate student and a PI for one year. The fact that people here have been banking on a cure from a $138,000 study that they actually still thought would produce an outcome when it hadn’t released anything at all in 7 years goes to show how clueless and misguided everyone here is. $138,000 is an absolute afterthought. $1,000,000 is the minimum for anything serious.
Agreed. $138k seems absurdly low…
Those two patients sadly would have lost their lives regardless of anything to do with Baylor. Where did this $138k number come from?
Really where did this number come from??Any proof of that number?
I believe we can test gene expression of SRD5A2 in fibroblasts of prepuce from 30 PFS patients and 30 controls, plus DHT concentrations, for USD 20,000 or less. That’s a hundred people donating 200 dollars.
This test, of course, was supposed to be part of the Harvard study that came out years ago, as far as I know, but skin from the back was tested instead – contrary to common sense, scientific literature and pre-agreed protocol.
It actually cost $168,000 for the Baylor study.
$100,000 for the study and an additional $2000 per patient that was part of the study with 34 patients in total.
And who would you approach to conduct such a study?