PFS Network - Patient Video Stories update, and call for podcast guests

Hi all,

It’s been a little over 3 months since we first launched the Patient Video Stories series on YouTube, to coincide with the launch of PFS Network. We are very pleased with the traction these important stories have received in that time.

  • @Dknighten’s powerful story about the impact of PFS on his life has now received over 5.2k views, 129 likes and a 90% like to dislike ratio.
  • The patient stories compilation has over 3.5k views, 119 likes and a 92% ratio.
  • Both Damon’s and my videos now rank in the top 5 search results for Post-Finasteride Syndrome on YT

Important to note that as views increase, so will the ranking of our content. Also very important are likes and comments, which YT uses to decide which content should rank highly. So please, continue to share, like and comment on the videos!

I have also begun filming for the PFS Network podcast and we now have 3 episodes recorded with another 3 to be recorded this week, and another 3 over the next 2-3 weeks. Huge thanks to @pokertje, @Toughluck24 and @Capello who are the new patients we’ll be featuring. We also have 3 family members and a clinician, and we’ll be filming a panel discussion episode with the participants from the patient stories series. I have invested in a home podcast studio and equipment, so the series will have a professional look and feel. That’s 9 new pieces of PFS content, which is incredible.

I’d like to put out a new call to any patients who are willing to speak on camera about their condition to get in touch. I was aiming for 6 episodes originally, but if we could launch with 12 that would be extremely powerful.

Take care,
Mitch

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Update - I’ve been a busy boy and now have 4 episodes recorded. I thought maybe sharing my experience about telling my story may be helpful in bringing forward new volunteers also.

Since I told my story back in March, and since I told all my friends and family about what’s going on with me, absolutely nothing has changed negatively. The only changes to come out of the whole experience were:

  • A feeling of being totally comfortable in being able to speak openly about this condition and not be ashamed
  • I’ve been spending a lot more time with my friends, who’ve shown nothing but support, compassion and empathy

For years I was worried about what others would think, or whether they would treat me differently, and those fears were totally unjustified.

Not saying the experience will be the same for everyone, but just something to consider when thinking about talking publicly.

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I’m so glad that your friends have been supportive!

I’ll make sure to like and comment on the videos.

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Hi, I wanted to chime in on this briefly. To anyone who comes across this thread, I’d greatly appreciate your time to read this and understand my mindset about speaking out and making a video.

It was one of the hardest things I’ve ever done. You simply cannot put the misery and suffering and devastation we’ve all suffered into words. It can not be done. Any time you try to explain it someone, or record yourself saying it, it comes out sounding less devastating than it truly is. An outside viewer can not see the physical changes you’ve experienced, the mental toll the cognitive symptoms have taken on you, and everything this condition has ultimately snatched from you. PFS has broken me into a thousand pieces, time and time again, with zero sign of letting up. As of now, there is zero replicable and proven treatment for PFS. Zero. The herb protocol, fasting, HCG + progesterone, TRT, GH peptides, some of it may work for a small percent of men, but there is absolutely ZERO treatment out there that has shown significant improvement for a substantial number of us. This is why it is so important to get your story out there. There are too many videos on Youtube of doctors and other random people talking about how PFS is psychosomatic, utter bullshit, or whatever adjective you can think of. Due to the hard work of this community & the legendary admins working behind the scenes, this condition is starting to be recognized. It is going to take TIME, but most importantly it is going to take US. Whether it be an Iphone, a camera, whatever. Please record your story. @Sugarhouse has an easy-to-follow guideline for anyone willing to step up and make a video. They have the means to post it on their social media platforms. We’ve talked so much about what this condition has stripped from us on these forums, please talk about it openly and online.

For those who have careers, friends, family, lives beyond these forums - I understand. You must understand that you are not putting these things in jeopardy by making a video. You don’t have to share your name or location. You just have to show your face and share your story. By nature, people are dismissive of forum posts and like to jump to the most logical conclusion. PFS is not logical. It is a bizarre, devastating disorder and people are going to vehemently deny it until there is concrete, irrefutable evidence that this drug has caused persistent changes in our receptors, genetic sequences, or whatever it has done. This is going to take TIME. The absolute best things any of us can do right now is to record our story, put it out there, and let it build viewership over time while we are fighting this. Right now, from what i’ve seen, there are about 10 or less total Youtube videos about personal PFS stories. This is crazy guys. It will be infinitely hard but you must understand how important it is to share your story, even if a 3 minute video. In many cases, shorter and to-the-point is going to be most effective.

I won’t beat a dead horse here but I had to state the importance of making a video. The guys here will help you every step of the way. When I recorded my video, I could barely string a sentence together without getting off track. I stared at that camera and had to restart 5 or more times when I recorded it. But I knew how important it was to get out there. I knew that one day a young man with his entire future in front of him is going to see me sitting there, completely broken, and re-think his decision to take that fucking medication. It may even save his life. That alone is worth the fear, anxiety, and inconvenience to record that 10 minute video. Guys, many of us have been here for years battling things that many people couldn’t even dream up. Please go a step further and be strong for 10 minutes. It has to be done.

Much love always,

Damon

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Damon, you’re an absolute hero in this community. Thank you for such a well articulated post. Much love man.

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@Sugarhouse - Dear Mitch, you and the guys who speak out, give so much power to all of us, that we don’t hide us and don’t feel ashemed anymore.
But can you explain to me how much Videos will be relased after all:
3 x 3 = 9 users filmed a video of their case. Plus 3 family member and one physican. And you @Sugarhouse filmed 4 episodes. So there will be a realese of 16 Videos on pfs Networks YouTube chanal this year.
A mighty statemet. When will you upload the first new episodes?
Hope your personal health situation after your crash developed.

I second that

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Thanks, we hope it will make a big splash. The content will hopefully be released in the coming months.