Raising a fund to start our own research program is a bit like opening a lemonade stand to buy a Bugatti. You’d need millions for a proper study. I think the money that is hoped to be raised by the NPO is to be used for labs to encourage further research. Now, whether or not you agree or trust where that money is spent is for you to decide.
Unless there are some seriously wealthy members here I don’t see anywhere near “a few $100K”. There are only twenty or so guys who post regularly and some of those can’t even swing the cash to go see Jacobs or Shippen. Of course Awor would have a better idea than I would, just guessing from my observations.
I’ve also wondered what happens when a research team discovers all they are interested in discovering about the AR, the role of methylation in gene expression, or whatever and then tell us we’re on our own. I don’t know if the interest of any research group is to cure PFS.
What is a bit concerning lately is the complete and intentional silence on all fronts by the parites involved with the project, the admins and the mods. I don’t know if it’s driven out of the fear of losing intellectual property, the law suits, or something else.
All of our lifes are depending on a cure! We all want to be normal again. I don´t know for what I should spend my money instead of a cure. I would work 10-15 years only to be cured. And I think it is thousands out there, thinking the same.
United.
This is the only way to find a cure. I am absolutly hoping that there is a result on this study, and if so - shouldn´t we collect money at least in this case?
Why should I post in this forum, in case there is no hope, no cure and nothing that is helping me?
I am only 3 weeks online - I think I have seen the most, so why should I stay? That is the reason people don´t come again 6 months later - but they are still suffering and you all know that this is what is happening.
So is there anyone able to start? I have no contact to researchers and I am no Admin. So please any of the admins could think about that? we could try this at least - our life is dependig on this!
And again we are able to collect millions of dollar - it would need some time but it is possible. What if a lawsuit is won? Shouldn´t the guys in it, spend it for searching a cure?
Well thats the thing, everything is kept secret and its tough to organize anything at all when half of what is actually going on is “behind the scenes” really doesn’t help motivate anyone. I bitched about this so many times even I am sick of saying it myself. I can say for a fact that I talk to three members who don’t post on this site actively anymore who still do have PFS but are just kind of fed up with how things are done here and are now just kind of going it alone so to speak.
I understand not being able to go into details. Hopefully Awor’s absence from posting here just means he’s been busy with other things. I think summer is a difficult time for alot not being able to do much while our friends and family enjoy the weather, holidays, etc. so maybe we all seem a bit more frustrated than usual.
Everyone can start their own PFS “fund” of course. Just put as much cash as you can aside. I’m sure there will come a day soon when you’ll be able to donate to a general fund for research.
Can we know WHEN we are going to get an update? I mean, you don’t even have to tell us what it is… just when we might expect some information would be really nice…
They know that many people are at breaking point, and, as a corollary they’re loathe to offer up any news which might fall short of peoples’ expectations. Awor is under more pressure than Obama at the moment, and, he is not getting a semblance of the latter’s financial restitution, accolades (perhaps a moot point as it pertains to Obama); and, perhaps most worryingly of all, he isn’t getting to hang out with George Clooney and the like. Resolution, if it does come, will take time.
Well I for one have reasonable expectations. I do not expect a cure to be announced with this research, but it would be nice to hear something. Maybe just something that explains what happened to us to at least some extent would be huge news, even if it doesn’t “directly” lead to a cure it could at least get people looking in the right direction. And just for peace of mind, I would really love to know how it happened from the scientific perspective. Ex. Finasteride caused down regulation of genes regulating tissue specific enzyme production through lowered irreverable 5AR2 binding. Thats just an example, but some kind of reasonable explaination or provable theory behind what has happened to us would be huge. Or else we can go back to what we have done for the past several years (its the immune system, its the prostate, its fungus, its the liver, its the thyroid, its your diet, its your nervous system, its your gene’s… and so on).
Yes, BP, but the devil is in the details. I think they’re creeped out by the fact that their reporting of insubstantial findings (not being smart or disrespectful at all; they have only just set out) could cause deaths; and, although they are definitely not responsible for the outcome if it were to happen, it categorically looms large in their minds. It is obvious that Awor and Mew are not your average unconscionable types that are quite prevalent these days. I believe Awor said that what had been discovered thus far may only be another symptom or marker of PFS; and, that they have to go down this convoluted path to establish the aforementioned. In a word, by saying nothing, everyone here is forced to do nothing (restrained from possibly harming themselves).
If this is what you believe to be the case, I think you will see that holding people already on the edge this way can only be done for so long.
Don’t take this next statement the wrong way, but if you think people are really hinging on this… when instead of Awor playing up the whole thing like it was going to be the biggest break through in PFS ever (which really isn’t saying much when you have nothing to compare it to anyway) maybe he should have been more conservative and explain that perhaps it may not lead to anything at all instead of leading people along so strongly as so many other people seem to do on this site with their own other little pet ideas.
Even if the research had come to results that enables them to answer these questions, they wouldn’t say so here and now. I think awor has made it clear before that any substantial research result would be published with the study and not before.
There are good reasons for this. First, all research (especially if it has substantial results) needs to be cross-checked, peer-reviewed etc. to make sure that there are no mistakes. It would be highly embarassing for everyone involved and highly diametral to our cause if we would make bold claims based on that research that later are found to be untrue. So not making any premature claims is the right thing to do. Imagine, one day we finally have Merck in court and they are able to smear the credibility of our scientific claims, because at one earlier stage we had made premature claims that were found to be incorrect. Speaking of Merck, we want everything to happen behind closed doors to give them as few hints as possible about what is going on and what has been found out, so that they cannot try to shut down the research. And finally, let’s face it, there are scientist and scientific institutions involved that don’t help us with money, manpower and other resources, because we are such nice guys (most of us are frustrated and miserable thanks to fin). They do so, because they themselves have something to gain. And the currencies in science reputation and recognition. They want to protect (see above) their reputation, and increase it as well as their recognition. And if there are actually any significant or even breakthrough results they will be carefully walking the appropriate path by placing their study in a scientific journal.
So, the silence could mean alot of things. Awor seemed quite sure that they found at least “something”. So regardless of how substantial this finding is, I guess they are a) still doing research or b) going through all the steps to publsih their results. The last update was just 1.5 months ago, unfortuantely this is nothing in a process like this. I’m frustrated, too, but I think the silence simply means there is just nothing new to report for now.
If getting Merck in court is your biggest concern versus being cured, your better off than I am.
Oh PS: if Merck is found to be liable (which of course we all know they are), even if they have to pay out $100,000,000.00 it still won’t be enough to really hurt them overall. Realistically, they made a drug that caused people to die, and barely got scratched after everything was said and done. How sad do you think the court system is going to be for us considering that for the most part everyone only thinks that we have “only” sexual side effects, the severe depression, lack of motivation, and the phelthora of other side effects are almost never mentioned. Thats why we get so little attention, people think we are just some guys who have trouble getting our dicks up, they don’t realize this stuff fucks you up entirely; head to toe.
Feel what way? Like previous posters said, some people’s lives are in balance here, and your talking about the lawsuit, to hell with the lawsuit, its a damn class action, we’ll be lucky if we see a couple thousand dollars in 5 years.
Oh yeah, and this is coming from one of the first 9 people to sue them. Less than 2 months after coming off finasteride and getting the side effects, I already hopped onto a class action suit. Amazing some people have been aware of the problem for years and didn’t start lawsuits sooner.
I don’t appreciate your tone and I don’t appreciate you putting words in my mouth. I talked about alot of things. The fact that you single out the lawsuit is absurd in this context. To suggest that the lawsuit is more important to me than a cure is simply laughable. I’m German, there is no lawsuit here, and since I took Proscar off-lable as well as illegal generics from India, on Merck’s side there is no liability towards me whatsoever. And even if there were I don’t need any money, I have enough for my modest lifestyle. Getting back my emotions and my life cannot be measured in terms of money. So don’t say that shit ever again.
