It would be helpful to hear from those who already participated in either study to share their experiences. It also might encourage others to sign up.
I happen to be interested in what the penile biopsy at Baylor entails and any after effects.
Why do you post this crap? You need to hear about our experiences doing the research so you can decide whether you want to do it or not? You mean the research that could lead to a cure? Stop all the suffering? End the suicides? You mean you MIGHT consider it if others had a “good” experience? What a fucking waste…anyone with this attitude(and its quite a few of you) is not helping the cause. Most of you don’t actually have the balls to do ANYTHING. I was just as bad, if not worse than most of you. Suicidal, moved back in with parents, not teaching - which is the one thing in my life I love to do. Finally I decided I am either going to kill myself, or suck it up and fight back. Fight back by participating in the research. Fight back by telling my story. Fight back by grabbing my life back by the throat, as much of it as I could. Fuck this shitty attitude - you are all waiting for a miracle, not realizing that YOU will have to do something first - we have our best chance of figuring out this fuck awful condition - and this moron posts “Tell us if its a good experience - I might want to participate…”
I tell you what - why don’t you tell us about your experience with the research studies?
Based on your recent posts, I’d be lying if I said I’m surprised by your response. If you’re so interested in promoting participation in the studies, maybe you should take an approach other than insulting others, who you have no idea about what they’re going through.
To answer your question, not that you deserve a response, I posted my question above as a request for information - just like my first posts when I posted my blood and tried to make sense of my crash. Fortunately, back then, there were a number of guys who were more interested in exchanging ideas and support than guys who bitched about “I suffered more than you, I’m doing more than you, etc.”.
Furthermore, where did you read that I was only interested in “good experiences” and that I “might be interested in participating”. Maybe you’re just reading what you want to read.
The number one thing is: apply for the studies.
Fuck all bartering over forum issues. The first thing is apply to the studies. Secondly, financial contribution to the Post Finasteride Syndrome Foundation.
I know exactly what all of you are going through. We’ve ALL LOST SOMETHING, WE HAVE ALL BEEN THROUGH HELL. I get it…I am on your side…but why does it matter if the research THAT CAN LEAD TO A CURE is a good experience or not? Seriously? If they asked me to stick pins in my eyeballs for the chance to cure this fucking nightmare I would do it in a second. Your post isn’t helping…just go and participate so we can figure this out. I know its hard…it was hard for me. But you can get it paid for…fuck, you even get paid if you do the Boston research.
Contact Allen Papazian (media@pfsfoundation.org) for funding help. This is all that matters. I am sorry for getting angry at you.
OhioGuy, Please contact Allen. He was very nice and got back to me right away. I qualified for the study but I have to wait a couple more months since this $hit just happened to me. I totally get how difficult life is once you get hit with this. Please overcome and do the study.
Does anyone know when any of the results will be published? What have the doctors noticed thus far? They must have noticed something!
I have to side with jorbie.
You all have two choices here:
(1) Sit back and take Merck’s abusive, egregiously psychopathic behavior – in which case they will keep doing the same to other patients in the years, and even decades, to come.
(2) Stand up and fight back. That means participating in any/all research studies that will accept you, telling your story via the media, and getting out there protesting at Merck’s front door. The latter is the easiest, and yet, to date, only Kevin Malley has done such.
Ain’t no one gonna help you but yourself.
They have not even finished testing yet, because there are not enough participants. Testing will take a while, analysing will take a while, writing a scientific article will take a while, submitting it to journals will take a while, peer-review will take a while, publishing will take a while. It’s a long process and the longer it takes to get enough participants for the studies, the longer we will have to wait. So everybody can speed the process up by applying to the studies. Otherwise we will never find out.
I found Len and Adam’s post(s) about their experience at the BWH study quite helpful and encouraging. I am working on getting into the Baylor study at the moment. Anyone that has already been have any advise? Best place to stay ect… What to expect… BWH was 2-3 days. Is Baylor just one day? Please don’t think this is a probe to see if its worth going, Its not. I am looking for experienced advise.
I only know baylor reqiures just 1 visit.