This may sound messed up, but Im hoping more people will join this forum once they experienced the persistent side effects. The youtube hair doctors are pushing fin as if its coke, so Im hoping lots of people will give the drug a shot (like I did).
Once we have a larger group of people with the side effects only then can we get companies interested (since there is money to be made) in doing research in a cure or an explanation about the condition.
Iâve been telling people to stop freaking out about telling people to get off of Finasteride, and to stop calling it âpoisonâ etc. The more PFS people we have the better
It might be more more of a positive angle to try and increase the profile of pfs so that those who are affected are more likely to find us.
Wishing misery on people, which is one way of interpreting the message of this topic, isnât a good look.
There are plenty of people who say they didnât realise the effects of medications until theyâd either built up or theyâd taken another substance.
I am confident that there are thousands of people out there with mild pfs who donât realise.
I didnt mean it in a bad way, im just speaking my thoughts. From the pharmacy viewpoint its a stone cold business, hence earning money out of misery.
Im sure youâre right about the fact that people do experience effects but do not relate them to their fin useâŚ
Iâm sure you didnât, but it doesnât read like the most compassionate of posts, as Iâm sure you agree, so worth mentioning.
Also, just FYI, we have over 5000 people signed up here. If everyone did their bit, or even one in ten, weâd be much harder to ignore, other people would find it easier to find us, etc. Etc.
One thing that a lot of plans that are discussed here have in common is that little happens beyond discussing them. In your opening post, you say that we need more people, we could have thousands of people posting daily and it would make no difference as long as all they did was post on this forum. Not criticising anyone who may be reading this, just saying.
Mods you should edit the title to say We need more people aware they have PFS.
No, we just need a solid fundraising process
Itâs very hard but doable
Well said Greek
What happened with to the YouTube project? Is it live?
5000 people is a very small number. Thats basically nothing compared to the amount of people that are using fin. For big pharma its only becoming a business case once youâre talking about millions of people with the disease/symptoms.
This forum is very easy to find, a simple query on Google with the combination of âfinasteride and persistent side effectsâ already lists this forum in the top 10. We ainât hard to find!
I guess making more noise by making youtube videos with the suffers is ideal to prevent people from taking the risk of using fin. However I dont think it will help us since weâre already hit with the symptoms
As I said in my first reply to you, I expect there are many people who have not made the connection between their symptoms and the drug they took, or are attributing mild symptoms to aging or whatever else. They arenât searching for the forum.
I hesitated to say millions of people earlier, but I donât think that is an impossibility when you consider how many substances trigger the symptoms that are commonly reported here, for years we have been of the opinion that the condition is a shared one, despite the drug acting as trigger being distinct.
I donât think that itâs our job to dissuade people from taking particular drugs, this may seem controversial given my earlier reply but there is a limit to what we can expect to achieve and focusing on being properly acknowledged and catered for is what we have to aim for. Some people will doubtlessly be positively influenced by our efforts and really, thereâs no way to raise the profile of this condition without that being an additional outcome.
In your original post, you said that more PFS victims need to come into existence, but really what we need is for those who are already in existence to share their story, for the world to acknowledge what has happened and for the situation to be made right.
I donât believe this is an impossibility, but everyone has a role to play. Anyone reading this should ask themselves what their role is. If the answer you come up with is âjust post anonymously on an Internet forumâ think a little harder about it.
It took 18 years for me to tie it up for reasons previously stated. Additionally Iâve come across 4 seperate people effected by PFS outside of the forum via me talking generally about what this has done to me. The numbers are out there I am in no doubt
I think if someone made a solid YouTube channel explaining Post Finasteride syndrome, what the science says, what drugs cause it, whatâs the best lifestyle to live if you have it, how can you tell if you have it, that would be great for spreading awareness.
We need to move beyond anxiety/emotion driven text posts repeatedly calling it âpoisonâ and that it âruined my lifeâ etc and actually spread the facts to people that need it the most, lest we be seen as hypochondriac maniacs.