There are thousands of us on this forum. Why don’t we flood a news outlet with emails so they cover this as a story? Collective action. Let’s choose one and everyone email a reporter or someone with power at an organization.
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Increasing awareness of this disease is an important goal. However, a few things worth noting.
- Co-ordinated efforts are always better. Rather than dozens of individuals reaching out to media outlets, we’ve tried to focus on having a registered charity (PFS Network) do the outreach. This has resulted in a lot of interest in the story - notably, The Economist, BBC and ABC in Australia all were interested in producing feature stories.
- Challenges. There have been challenges in turning this interest into something tangible. Two problems normally arise. Firstly, we’ve struggled to get enough public case studies for journalists to speak to. Journalists typically need at least 3 people willing to speak publicly in the region where the story will be published. Because of the stigma, this has been difficult, and we’ve sometimes had patients interested only to - quite understandably - withdraw at the last minute because of privacy concerns. Secondly, the science is unfortunately not quite sufficient enough yet for this story to not be controversial for mainstream media outlets to take on. If we have managed to get enough case studies, journalists will then ask for experts who can talk about the published science to date. This is difficult, as there’s really only a small number of scientists who’ve published significant research about the disease, and often these studies aren’t in well-known journals.
- Focus on what we can control. We’ve instead focused on what we can control through our YouTube series. This is currently the best way for patients to get involved and tell their story. We’ve published over 10 individual accounts so far, and our next series will be released soon with another five accounts. Given YouTube is a popular source of information for men considering the drug, and in general, it’s a logical place to try and have our story heard. It’s not perfect, but it’s a good start.
If you’d like to get involved with the YouTube series, please get in touch. Or, if you’d like to coordinate some outreach to media outlets in the US, happy to chat about that as well, just let me know. We can always use the help.
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personally i think we should make a coordinated effort to tap into influencers with some type of authorities and large number of followers.
large news outlets may favor being largely silent on this topic for a variety of reasons, and even if they don’t, the chances of getting covered are slim.
when you can’t take the beast head on, you can attack indirectly, via other sources of news (independent journalists with large prominance, independent health “authorities/figures”. i mean just think if 1 of those quacks with hundreds of thousands of followers of social media agreed to start warning people of the use of finasteride, how quickly we can generate awareness.
I’d love to help with both. We’re all too focused on fixing our individual cases instead of garnering collective action. How do I get started with both of those avenues?
Feel free to send me a PM - we can set up a call to discuss.
Mitch- it’s not letting me send you a DM. I’m a new user, how do I go about this?
Try now. New users need a few posts before the system bumps up their trust level.
My opinion, this thing is darker than we thought, I told my story to many people, including the government, and I believe that others have done a lot, but they all think that our situation is an “affordable number”, besides, what is the benefit to others in helping us?
You can look at the youtube last ten years ago there were reports of finasteride syndrome
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It still works
I’ve read many anecdotes of people not using finasteride because they heard about the serious Side effects
Awareness is definitely spreading and social media is a great tool to do so
We just need to figure out how to go viral with a meme
Imagine if one of us started a twitter war with a well known celebrity who is balding and told him to “use finasteride even though you’ll get #propeciaPenis”
Boom. Instant meme and inadvertent awareness we could redirect to charitable efforts.
But rather than high virality focus should be on brick by brick efforts with the webinars and interviews we do.
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Agree with you, brother, yes, I also helped some people, they didn’t jump into the “fire pit” like me, but the people in the fire pit have nothing to do with them, I think you can try more to raise awareness, but don’t get your hopes up, recharge your strength, and make some money when your body recovers somewhat, that’s what we can control.
On TikTok, you can spend money to increase video delivery, so that’s not something we can control at all
It’s already been done before. From the media’s perspective, they’d just be covering an old story. I highly encourage you but it’s important to understand the road has been paved by others and it’s up to you to decide if you want to expand that road.