It certainly took courage to go on national television with a story like that - but I really don’t see any positive outcome that came from it. It gave Merck a forum to distribute professional PR, threatened the reputation of PFS doctors, and created the perception that Mandi is not credible. There is also no shame in valuing one’s privacy. Just because we have had this horrible thing happen to us does not mean we need to broadcast it to the entire world as people will not fail to misunderstand and incorrectly judge us. The most productive outcomes for the PFS community were built from people that were working subtly and intelligently behind the scenes. These acts of bravado simply seem to delegitimize us.
That is complete nonsense [redacted by moderator]. There is no shame in valueing one’s privacy, but there is shame in being too afraid to make an injustice visible when one was done to you. I wish someone would have broadcast to the entire world what Propecia did to them because when I took it in Summer 2011, it was still common knowledge that finasteride was a safe drug. If someone had done that for me, my life would’ve been saved. Why are you so interested in what people think? They will misunderstand you if you fail to communicate the message effectively. The most productive outcomes for the PFS community were built from people strengthening the PFS Network by publically announcing and describing the condition. I appreciate [redacted by moderator] e-mails to the FDA but that has very little effect, regardless of how well they’re written.
eta: All the “behind the scenes” work was done in Italy by people pubically talking about PFS.
Agreed the first sufferers started gathering in the late 90s early 2000s … yet the last 2 years particularly the last 8 months or so has seen more done than the entire 10 years before and all that was needed was a lawsuit filed and one single pissed off guy sitting outside Merck HQ for a week and a half… all the while people on here people here criticizing him for doing so. Makes me wonder what’s more important to some of you guys here your well being or precieved sense of privacy. Which IMO, what does your privacy matter when you have to live your entire life as a depressed anxiety prone eunich?
SA, you’re off base. The reason why you don’t see this is you believe already that the injustice was done. Mandi was presenting a new concept to most people who don’t already believe finasteride causes severe, persistent side effects.
This was a clear signal for Mandi to either walk out or to ignore what he was told. Those with cognitive difficulties should not enter an unfair public forum to debate. Period. Belief is based on credibility and, quite frankly, Mandi did not appear nearly as credible as she should have because she didn’t insist on talking about the science and calling Cooper out on switching doctors and the subject matter of the interview at the last moment.
Furthermore, what network was this on? Did anyone watch and see what commercials were being aired? Does anyone know what the network receives for pharmaceutical advertisements?
It was on Fox. I did notice one commercial was a non-hormonal contraceptive for women. Don’t know what the product was though.
I’ll also note that this was the first time the words “Post Finasteride Syndrome” were uttered on national TV. And it was spoken by a respected neuroendocrinologist. While the broadcast was a missed opportunity in a lot of ways, it did help to raise awareness.
Guys, here’s the bottom line:
On the research front, no one has any answers yet–least of all Merck, as the company “persists” in refusing to acknowledge their very own product causes post-finasteride syndrome. But thank god Dr. Irwig stepped up and started the ball rolling on his own time, and Dr. Santmann followed up by establishing a foundation to fund further scientific research into the issue. And it will probably take at least six months to one year before we see the results of new research demonstrating a causal link.
On the legal front, it will probably be about one year as well, before the cases make their way to trial, that is.
In the meantime, however, here’s what we CAN do: We can help prevent other men from falling prey to Merck’s Josef Mengele-like sales pitch for Propecia–promising that it’s safe and effective and if, on the 2% chance they do develop side effects, they can simply quit the drug and return to their former, happy, healthy selves. We can do this by coming out publicly and telling the truth about how Propecia has ruined our lives.
And on this front we’re making progress. As John Peige pointed out in The Examiner…
examiner.com/article/propeci … -drug-dive
…Propecia sales are down more than 10% over the same period last quarter. The translates into about 20,000 fewer men who took the drug this year. And assuming (conservatively) that 10% of all men who take Propecia will suffer post-finasteride syndrome, we have therefore saved the lives of 2,000 men.
So let’s brush ourselves off, pat ourselves on the back, and continue keeping Dr. Mengele at bay.
Can I get an Amen?
“Amen!”
Thank you, Kenneth Frazier. You’re a good church boy after all.
Correlation does not mean causation. The economic situation continues to deteriorate and Propecia, a cosmetic drug which can cost upward of $720 a year, may also just be a luxury that is being sacrificed by men who can no longer afford it - or they are switching to generics.
Everyone needs to remember that we’re living this nightmare but most people have no idea about finasteride or anything surrounding it. North Americans are bombarded with advertising and information. The message needs to be simple and consistent so that the average person can comprehend it AND cognitively impaired individuals don’t screw up the delivery.
Critical Mass: an amount necessary or sufficient to have a significant effect or to achieve a result; a critical mass of popular support.
You’re really wondering why a physically, mentally, and sexually devastated group of individuals took a while to start getting their word out on a national scale?
I’d like to remind everyone that each individual has a right to personal privacy. If someone has shared something with you (like their name) privately it does not mean it’s fair for you to share it publicly. Do not post private names on the forum unless it’s your own.
I agree. I think the majority of people on the forum agree. Its just a loud minority of 2 or 3 individuals who make it seem otherwise.
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Also;
*The warning label was changed to mention persistent ED at that time
*You started in 2005???
This is a reminder to all users: for privacy and legal reasons, publicly posting and disclosing the real names of users involved on this forum or with legal matters without their consent is strictly prohibited.
If such actions continue to occur, your account will be suspended for a period of time. If you must reference an individual in your topic, use a general descriptor such as “doctor”, “individual”, “user” etc.
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How malicious, just because he disagreed with you.
Point out the shemale thing is a bad idea
or that lawsuits and research where already underway before he went on TV
and you get named and shamed by second_amendment!
My doctor didn’t get the memo.
what part of “off and on” do you not understand?
Ahahahahah man are you crazy? 10%??? If pfs occurred to 10% of propecia users propecia would have been withdrawn long time ago, we are only 0,1%, probably less, that’s why noone cares about us.
Hmmmm, smells a bit fishy.
viewtopic.php?f=27&t=6161&p=51941&hilit=prescribed#p51941
Extremely counterproductive, maybe Springer would have been a better show. Period.
Fin feminized your brain more than Mandi’s. There is no logical reason for a grown man to worried about such bullshit.
Did it ever occur to you that a doctor can prescribe you a drug more than once? Do you know what “off and on” means?
You are a liar, therefore not a good representative of PFS, why would you lie though, thats the big question.
I don’t see you stepping up to plate big guy. All you do is berate those who are indirectly trying to help you… he isn’t lying. I used it Once in 2005 as well… got milder sides than I have now didn’t attribute it to propecia at the time. Mandi is kind of the same thing… couldn’t figure out why he was depressed, anxeity prone and feeling transgendered…
I hope you two use condoms.
It’s irrelevant what aspects of my story you don’t believe. Why are you so afraid to talk about PFS publically? That is the big question.
Because he’s never got laid in the first place and is worried if girls find out he’s impotent he never will.
Oh no. A gay joke. Its so funny to everyone else, but my feelings are hurt.
Seriously Tim. You’re a grown man. Act like one. You’re life got ruined because assholes in New Jersey lied to you, and you go online and make gay jokes.