More warnings will decrease the likelihood of a cure not increase it. Should be obvious. It’s an honorable thing to do, but don’t tell me that it increases the likelihood of a cure.
Fantastic idea- if my face wasn’t messed up from this I’d 100% help you out man I’m just too self conscious right now, I won’t even look in a mirror.
I actually believe a professional documentary on finasteride with victims, families of those passed away from suffering and doctors who will speak out against finasteride would help us out more so than anything we can do right now it would put pressure on merck and co as reputation and stock price comes under threat. A documentary would destroy the drugs credibily while a mass scare would ensue from people already taking it as would those who never connected their symptoms to finasteride. I’d expect thousands registering on this site and interested medical institutions who would start their own research on it.
I would absolutely donate if someone was putting a doc together that was good enough for Netflix.
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Sorry, how did you come to this conclusion?
Are you talking about government warnings/black label warnings on the bottles of finasteride? I think those kinds of warnings would trigger further research into the condition.
Doing nothing won’t get us anywhere, that’s for sure.
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I’m game for it. Let me know.
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A lot more patients are sharing their stories on YouTube now. We think this is an important project and we look forward to seeing some new videos!
Absolutely agree. While adding his record to our in memoriam page, I saw a video by Quantumfaith the other day that, while sadly quite low quality, did a good job of communicating what he was struggling with personally as a result of saw palmetto extract and the development of his situation.
Not only will this spread awareness of the variable impact on people, but will humanise the issue in a way text cant. Additionally, use of social outreach platforms like youtube will abstract the actual experiences of patients from the sharing of google results and alternative health ideas that often populate the forum due to more regular posting in such topics. As @awor noted ten years ago, the appearance of an alternative heath site is very off-putting to scientists and members of the public in terms of taking the issue seriously. If a new member cites previous awareness of PFS before taking the drug, you will often see them say “I thought [pfs patients] were all just crazy” or something to that effect. To be clear: This is not an alternative health site, it’s a patient support site, and it shouldn’t be assumed everyone reading and using the site is equally interested in what members deem to be theories just because of post volume.
Ideas as to etiology are fine to be shared in line with the guidelines. However, the sheer volume of ideas recently that reflect a very limited awareness of the broad patient experience, specific symptoms and varied reactions, and fifteen years of the actual situation many patients are in has led to myself and the other moderators receiving messages from members who are finding some of the posts overwhelming and reckless, and requesting greater warnings. I can see why and will be taking this into account for the new user guide. We are seeing an increase in members joining up and, before even sharing their experiences in any detail for the benefit of the community/issue, proposing what they believe is a theory or therapy. This is detrimental to the function of the site as a valuable anecdotal record, and as the forum is anonymous we have little idea of the validity of these claims or users. Recently, a user on a PSSD forum took advantage of this to deceive users regarding improvement so he could have them guinea pig for him. This is dire, and unfortunately a great vulnerability of this sadly often desperate situation.
It’s important to be aware that the variable patient conditions and molecular level findings are suggesting significant complexity, and a priority far above patient guesswork is making clear to the world, accurately, what is actually happening to patients. Your symptoms are something you are the best authority regarding, and we can all help with making this known right now. We don’t need to wait for a study to come out for this. Particularly, taking the survey will contribute to powerful standardised data, but additionally this youtube project to share personal stories as a valuable human being - which you are - could be hugely beneficial to our issue.
I sincerely hope that once we put out stories in a structured fashion, it will encourage others to do the same. As for a documentary, we’ve discussed this as a team and see it as something with potential, but feel first we need to get people speaking out.
Thanks to all volunteering and @Jaime for his work taking a lead here. Do post and reach out to SBBH if you want to join this effort.
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If you raise awareness among people considering using the medication, you will reduce the number of people taking the medication, which in turn will reduce the number of people who will be affected long term. This will reduce the need to find a cure.
Hey guys,
Just to let you know @Jaime will soon be reaching out to those volunteering with further information on participating. Hopefully this will be the start of something significant and participation will beget further participation.
Anyone interested in sharing their story, please read the original post of this topic.
Thanks
I would be interested. I can’t do it at the moment, though I will try to do this in the future.
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A quick bump for this.
Anyone else interested?
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I’d like to be involved.
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That’s excellent @trav. @LazarusRy, @Andrew35, @forgotten_dreams - the guys heading our media outreach will contact you shortly.
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Moved this to general discussion for discussion and volunteering shouts, as we now have a guide and template available in the community projects category. Please see the following thread:
Great work, @Jaime & @Greek . It’s great to see a growing number of videos from users - this is a big help to the community here. And, most of all, it helps get our condition in front of researchers, doctors and medical professionals. This is happening at a time when we are soon to get the Baylor study, along with growing mainstream media interest in our syndrome. We are on the right path. Each and every video is another step towards escaping our condition.
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No more interested PFS members?
This is a great opportunity IMO. We are only framing this as what is happening to people: no chance of putting words in your mouth. You might get more than what you bargained for with an outside party.
An acquaintance learned this the hard way after interviewing with “The Truther Girls”.
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I’ve never heard of them - I thought “truthers” were linked to exposing 9/11 conspiracies… Are they?
Yes. And other famous conspiracy theories. Some minor Youtube celebrities.
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I just invested the time to watch all 17 videos on the Propeciahelp YouTube site. Disappointed that there is nothing there newer than 2012.
When will the new testimonials be posted? Thanks
PS: I would consider making one of your testimonial videos, but I am probably not what you are looking for, as I am 64 and was affected by PFS through Proscar only ten months ago. Jim
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i am already reading how to open youtube channel and reading ‘how to film yourself’ , so video project will be 100% about pfs on youtube.
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