PFS Podcast

General Discussion Media & Awareness
#1

I just wanted to post this again in response to something I read on a different thread yesterday. Someone had stated that they believe the reason that no one wants to tell their story on the podcast is “they don’t really have full blown PFS.” This poster went on to say that they themselves had considered coming on the show, but since they have had a partial recovery, that they don’t need to tell their story. A couple things:

  1. I am not sure what “full blown PFS” is…I think most on here would agree that things are the worst a year or two after stopping, but almost EVERYONE I talk to has had some recovery over time. Nobody stays in the “full blown PFS” mode for their entire life. If that were the case, we would ALL commit suicide.

  2. Even if you have recovered somewhat, the fact is THAT YOU RECOVERED FROM A PROBLEM CAUSED BY A HAIR LOSS DRUG - a problem that never would have existed if you hadn’t taken the drug. I think some people are so relieved that the symptoms have abated somewhat that they forget that a drug sold to them as safe made them sick.

  3. If you have made a decent recovery - THAT EVEN MORE OF A REASON TO COME ON THE SHOW - a lot of guys are still in “full blown PFS” mode and hearing new voices telling them that things get better can help us prevent future suicides. If you mourn for those we’ve lost, yet don’t tell your story, it seems hypocritical.

  4. The poster intimated that most men don’t want to tell their story since they have recovered. The truth is, I have reached out and contacted over 10 members of PH that have turned me down - and the majority have done so because they are either too scared to talked, or they have severe symptoms and are worried how they will sound. No one has yet told me they don’t want to do the show because they have recovered completely.

Please - if you haven’t told your story yet - please consider it. I have Dr. Andrew Rynne scheduled for next week - but getting a victim to come on and tell their story is much more difficult. I know how hard this disease is…I know how unfair, and devastating it is…I too am angry, but please, PM me so we can set up a time to get your story on the air. The more voices we have, the harder it will be for the outside world to deny PFS.

#2

Excellent points.

Look at all the awareness PFS victim Ben King is creating by coming out and telling his story:

pfsfoundation.org/wp-content … -27-14.png

#3

in my opinion people are scared of being recognised,it takes a lot of guts to go public about your pfs,i for one certainly wouldnt like everyone in my hometown knowing im the man with no sex drive and a limp dick etc etc because of a drug i took,having to live with pfs is bad enough,having everyone know the truth of what has happened to me would be too much to bare…

#4

Excellent points, Robbo – ones that will no doubt make Merck happy.

You see, they are COUNTING on victims like you to go crawl under a rock and cry. Then they can say, “Problem with our product? What problem?”

Do you think Ben King’s friends and family are laughing at him? No, they are supporting him and encouraging him to keep talking about the potential dangers of Propecia.

As I said, you can stand up and be counted.

Or you can sit under your rock and mope for the rest of your life.

#5

He’s being honest. What have you done exactly?

God bless that UK guy but that headline is why many fear going to the media I’d imagine.

#6

The reason alot of us are still here is because we have our families to think of. It doesnt mean we are not going through extreme hardship.

BTW I would like to come on your show when my condition stabilizes. But at the moment just getting through the day is a struggle for me.

#7

@Luckfax & Robbo

I respect you both as members on this board and for the support you have shown me in the past but PR123 is right!

Merck love victims like yourselves to just stay quiet about your shitty poor quality of life. I for one, like Ben King, like Kevin Malley (second amendment) are doing all we can to generate awareness of this fucking deadly disease. Likewise, so is Adam (Jorbie) And Mark2012

Ive set up a website, spoken to Adam on his podcast, set up a weekly PFS skype meeting group, I’m arranging a physical meet up in June for Uk members, I’m heavily involved in much more shit behind the scenes which I’m not prepared to talk about here but rest assured in the coming weeks PFS will have its recognition on TV screens within the uk

PR123 is a valued member here and his input is fucking priceless

Jorbie is doing an amazing fucking job with his podcasts so instead of bitching about your PFS show him and the rest of us some real support so that people cannot say that PFS is just an internet myth!

Mark2012 is also doing all he can to promote awareness all over the internet by making posts on most things that slightly promotes Propecia so hats off to you too Mark and thank you

There are too many moaning members not prepared to put they’re necks on the line for the cause

The minority here are do-ers whilst others simply observe and shy away

I wish i could say more but I am upset by Luckfax post and Robbo’s too

I want to be remembered for the fucker who took on Merck like Kevin Malley, like Ben King, not for somebody who bitched about how the drug fucked them but did nothing about it so get off your arses, swallow your pride and do something to support us do-ers and something you can be proud of!

If I kill myself in years to come at least I can say I did all I could to help others and raise as much awareness as possible

I drive around all day in my car with magnets stuck to sides and back of warning people not to take Propecia and directing them to my website for Christ sakes!

#8

@pr123 & tigershull,ofcourse i agree with both of you,getting pfs into the media is the best thing anyone here can do,that is the one thing that hurts merck the most,stories of pfs allover the tv and news papers etc will win this for us im sure of that,i admire anyone who has the guts to put their neck on the line as you say and go public with their story,i was simply giving an honest opinion why i thought more people werent coming forward with their stories…

#9

Yes, Robbo. We do understand how hard it is. But think of it like this:

One day in the next 10 years, this epic nightmare known as Propecia will be turned into a major motion picture, not unlike “Erin Brochovich” (Julia Roberts) or “The Insider” (Al Pacino).

And when that day comes, how do you want to be portrayed?

As one of the heroes who beat the @&%# out of Big Phrama (Darth Frazier)?

#10

If there is a movie about this Ryan Gosling is playing me. With a shaved head of course.

BTW guys this is “broken_pecker” I changed my name cause my pecker is only 87% broken now… its functional about 13% of the time… which isn’t acceptable but I can deal with it.

#11

I’m sorry…but most of the men that have come on the show have done so with an alias…you really think everyone in your hometown listens to this podcast?

If its such a big fear - just talk to me off the air, I will transcribe your story and have someone else tell it in your place, with your name removed…could you at least do that?

#12

Jorbie if you need people to go on I will go on and talk more about PFS with you… Hell knows I can talk for days about PFS. Obviously my name is out there and I don’t have a problem discussing this stuff in detail.

That said… it would be best to have as many different people as possible tell their stories.

#13

I see Adam has Dr. Andrew Rynne on later this morning:

blogtalkradio.com/pfsglobal/ … drew-rynne

Rynne seems to have a fairly deep background in men’s health:

youtube.com/user/DrAndrewRynne

So I’ll be curious to get his take on the PFS epidemic.

#14

I’m looking forward to the interview with Dr Rynne.

Out of all the doctors I have met he was only one who did anything to help me.

He seems to be the only Doctor in Ireland who is aware of PFS.

#15

Epidemic? Seems like PFS is rare.

#16

@Hopingforthebest: Here’s a dictionary definition of epidemic:

“A rapid spread or increase in the occurrence of something.”

@Adam: Another excellent interview:

blogtalkradio.com/pfsglobal/ … drew-rynne

Nice to hear Dr. Rynne being vehemently opposed to finasteride–and saying that more doctors need to recognize PFS as a serious condition.

#17

Adam

I cannot tell you enough how much I appreciate your constant efforts with your podcasts

Just listened to your Dr Rynne interview, very good, my only criticism would be that it was a little too short in duration.

I know you have quite a few guys from the Uk forecast to appear on your show in the coming weeks, with one of your guests been Ben King.

I met up with Ben in person last week. He is a truly inspirational guy and his story is almost identical to mine. Me and Ben are a huge fighting force in raising media awareness of thus terrible condition and we plan to do all we can to fight Merck and get our stories out there

pfsfoundation.org/wp-content … -27-14.png

Thanks again for your continued support Adam

You are also playing a pivotal role in raising mass awareness

You a key player too and I personally commend you.

#18

I just noticed that Adam Held has Ben King scheduled for his radio show this Saturday:

blogtalkradio.com/pfsglobal/ … ings-story

Will definitely be tuning in live for that one.

Ben, of course, made waves throughout Europe earlier this month when he shared his story with Britain’s The Daily Star:

pfsfoundation.org/wp-content … -27-14.png

So he may have a “shrunken willy” but he’s got bigger balls than every Merck employee combined.

#19

If you missed Ben King on Adam’s show, you need to tune in soon:

blogtalkradio.com/pfsglobal/ … king-story

Such a tragic story.

And he and Adam both make an excellent point, which is that more PFS victims need to tell their stories to the media, not only in the UK or USA, but around the globe.

#20

Great interview with Ben I think this was the best PFS podcast so far.