Looks like this site has all but died…Hope the much needed revamp coming brings new life and awareness…And if Baylor Study which started 5 years ago and has been finished for 3 years plus the next Melcangi studies don’t show something “very significant” looks like pfs is just gonna go by the way side and all of us will be forced to just live the remainder of our lives out battling this brutal condition ourselves till the end…
I have given up almost all hope for a normal life. If those studies are anything short of a miracle, I probably won’t be able to last much longer.
Yes the $$$ and complacency is something to consider, if PFS victims are apathetic how can we expect anything else from those who would be willing to help. viewtopic.php?p=107481&f=13#p107481
I talked to guy other night on twitter took the drug in 1998 for 6 months and has still not recovered…20 years later he is not the same and has sides…His life got totally robbed…
Did he make some efforts to warn others? like a webpage or blog stating “Finasteride made me impotent. It is very dangerous, do not trust Merck’s claims about the minor side-effects that go away.”
This is the same thing that I have been complaining about for some time now, the lack of openness in the PFS research. I’ve not heard that the Baylor study was finished 3 years now. I have been wondering what is going on with it 5 long years after it started. And why did they start a Melcangi study to look at the same things that Baylor was looking at? The foundation knows these answers but doesn’t divulge them. I am encouraged that the PFS foundation continues to be focused on research but I wish they would reach out to us, talk to us, encourage us to somehow participate in their efforts and be more a part of the solution instead of casual observers. They should have a forum on the help site where we can learn where they are headed and ask questions.
As far as this site I’ve always liked the way mew laid it out. I think there is just a lot of apathy among long time sufferers and no leadership for our cause here.
What if some conclusions should not go public?
Do we really think that those studies arent surveilled?
What if the results could put somehow somebody in danger?
I did not pay for pfs. I paid for a safe antibalding pill.
Did the enterprises lie about the sides? Or didnt they knew them? I am not the judge.
HM…