They published a story about Finasteride.
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Maybe people could start with rough drafts such as brief videos describing what they wanted to do with their lives, what their hopes and aspirations were, what they are doing now instead, how their health problem has been a setback for them, what they will have to do if a cure doesn’t arrive within a certain timeframe, and what they would alternatively be able to do if it did. Just quick 5 minute videos for now to get an idea of what we have to work with and get juices flowing.
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We only need people to agree to take part, we have everything else worked out.
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Why don’t you do it too? Why don’t administrators and mod do it too? We’re not criminals! We are victims! I live in a small town, a video like that would make me the laughing stock of the country, and I would be willing to do it too. Here we talk about foundation, fundraising, but we don’t even know the names of those who manage them. We know nothing.
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Maybe instead of things people can contribute to being described in threads placed randomly about, that have to be dug up by people who already know about them to be found, it would be good if the site had an “action center” where people can go to find ways to contribute.
Or at least stickies for the more significant projects in the community projects subforum.
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Yes and that’s encouraging. Now we have much more. Now we realize it isn’t just middle-aged, bald rich guys trying to look younger, but also teenagers having their lives rekt before they’d even started (Accutane), as well as people of all ages and genders who were already struggling with depression (PSSD).
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I agree with you on that we all must lead by example.
I recall there was someone in the news who tried doing a hunger strike at Merck headquarters. For what it’s worth, I would honestly be willing to protest in some fashion, if other people were. Unfortunately I don’t live near Merck or Roche headquarters.
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What’s the best way to initiate research ourselves? I imagine funding is the main issue.
Just to comment on this, the YouTube video project is, and has always been presented as, a project for those who want to publicly share their story and have the benefit of it gaining more exposure and raising more awareness by releasing it via the Propecia Help social media accounts. This was made explicit in the very first public post on the subject here Are you interested in sharing your story for our Youtube project?
Each individual can decide whether this is right for them. Furthermore, one of our moderators, @Dubya_B has shared their story publicly on YouTube, here:
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Maybe instead of things people can contribute to being described in threads placed randomly about, that have to be dug up by people who already know about them to be found, it would be good if the site had an “action center” where people can go to find ways to contribute.
A guide is live, setting out projects users can help with. There is also a sub-forum dedicated to community projects:
If anyone wants to help us out on these projects - we need everyone to pitch in. We need people to get involved.
No harm came to myself or @Luckydevil resulting from the making of that video. It would have actually been nice to have a structured outline to follow rather than being all over the place, me looking more awful than usual from poor lighting and video quality, and running 2 hours longer than necessary. A man named Edward also revealed his identity in the press regarding PAS without insult or injury. There was another young man whose mother outed him on facebook for having PAS with his consent. Worst case scenario seems to be that no one cares. …To be expected with the low number of people who speak out about this condition.
Can anyone state a specific reason they will not participate in the except that the majority of mods/admins haven’t? The guidelines don’t sound very restricting in my opinion. Basically don’t make threats, don’t bring up this week’s dumb theory, etc.
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Wow I didn’t know that was you Dubya. I appreciate your strength for showing yourself to the public and talking about it.
I think most people wouldn’t want to go on because it would basically be admitting to everyone that we have all these problems that should not be seen in us at this age. I remember asking my doctor for Viagra and he was almost laughing. I was 24. He even said that finasteride was good for him because his sex drive was too high and it calmed him down. Thanks Doc.
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I know. They’re great. I just think they could be elevated a little more over the regular posts. I thought calls for action and actionable items, or at least particularly significant ones, could be highlighted more so everyone sees them without having to look for them.
@Luckydevil and @Dubya_B great work!!! Will you guys be doing the YouTube thing also? My only excuse was the fact you’re kinda focusing on fin first as I read in the outline. I could also make other excuses like my brains dopamine function is fried so can barely move but I would find a way to over ride that. It’s only 6 people I’m surprised we don’t have that immediately!!
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Anyway… I want to hear the conclusion because i’m not a english speaker so i can’t undersatnd the whole conversation but can understand a little.
sorry for poor english.
The conclusion is that We just have to wait until the Baylor study come out?? and we need more studies to confirm our condition??
In this thread, there are many talking not about baylor study. so very confused.
Anybody let me know Our state and future!
living with this condition 2 years… is very hard time
but I have a hope one day i can be a healthy person!
Essentially there is nothing in progress or even proposed with the scope and comprehensiveness that the Baylor study is looking to cover.
In plain English, the conversation on this thread is whether the community is being too complacent, by pinning too many hopes on the eventual publication of the Baylor study rather than attempting to create new avenues of inquiry and outreach.
You are entirely correct - this is way off topic for this thread.
Thank you for your answers.
You mean Baylor study can not be the key study to check our condition? and we will have to make another study to make progress?
This thread originally had no point. There hasn’t been any news on Baylor in about a year. It got submitted to a journal, supposedly, early 2019. We’ve know that since when it happened. It normally takes much less time than has transpired now since for a journal to approve and publish. Nothing has happened. For all we know it will never be published and/or there isn’t anything interesting in Part 1 and Part 2 will never publish. It’s utterly pathetic that we continue to sit here talking about it. Don’t know why this thread was created.
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Everyone has been sitting and waiting for Baylor for 7 years or something thinking it would come out in a few months and that it would yield a cure. It never even came out.
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