Does anyone here have good written and comprehensive skills to write a letter that we can all send out to the media, politicians, journalists etc? I would do it myself but my brain has seriously declined and written skills are terrible. The letter would briefly explain what PFS is and what is happening to us out there and that we are being left to die in horrendous conditions.
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You can certainly write personal letters but I don’t think private letters would do it. We need high quality articles in authoritative media outlets, or in other words, public exposure.
Politicians don’t care about your pain - if you are alive or death. They only care about looking good to voters. They react only to things that matter to the public opinion.
Journalists could care if they see a good story they can write about, which is again driven by a profit motive.
In general, the way to fight this battle, in my opinion, is to expose the lies and corruption in public so that relevant actors have no choice but take action.
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With these things, you really need a customized letter to appeal to the interests of the recipient of your letter. Unless you have a legitimate political contact, politicians are not likely to care about this kind of thing but at best they may be willing to make a referral. Obviously it helps if you donated to their campaign.
Journalists have their own interests and agendas. The agency is about profit but journalists aren’t especially motivated by money. We’ve got to find the right journalists with aligned interests in strong outlets. This is very challenging but doable if we have a good story to tell.
The problem with is sending a blanket email is the recipient won’t know what to do with it and you want to sending something short that quickly demonstrates why they will want to do X, Y, or Z.
I hate to be blunt, but I think this is barking up the wrong tree. Media, politicians, and journalists aren’t going to be able to get the influence we need to make a breakthrough with this condition.
It’s 2020, movements happen through the internet, through joint public consciousness.
Think #metoo, think the explosion of awareness of anxiety and depression.
If you want PFS to be a hot topic of discussion and to get more funding then you definitely don’t want to go to a journalist or a politician. It’s not 1994.
What we need is PFS memes, PFS twitter pages, PFS subreddits. We need to send an army out onto the internet to interweave this into the public consciousness.
That’s how you get shit to change in the modern world!
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The #metoo movement started with Ronan Farrow’s expose in the New Yorker, a mainstream media source. It was met with resistance and was not published by the first channel that he tried. Fortunately, we already have an expose in the Reuters article.
There are still more stories for mainstream media and there’s still room for social media campaigns. It’s not an either or thing.
Something like 150 people a day are dying from Fentanyl pouring into country and they’re focused on Russia conspiracies and impeachment. Literally, 150 A DAY. You think anyone in media or Congress is going to give a damn about some Propecia users?
It’s up to us to raise the money for science from friends and family.
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Fair point. But in terms of what have the power to do; in my opinion, we get much more mileage for our effort out with social media campaigns.
Probably the best way to get publicity is through stories of girls committing suicide going viral on social media. Accutane and PSSD. No one is going to care about middle aged white guys. Just being real.
And what happens when resources run out and we can’t get anymore independent
studies- the resources won’t always be there they come from a very small pool of people. We have had studies in the past were big pharma have become involved like the Harvard study calling us psychosomatic what’s stopping this from continuing until all resources are eventually exhausted. Universities don’t want to hurt the cash flow that feeds them and that’s were the research is done- big pharma lit pay them billions and they sure as hell won’t bite the hand that feeds them but that’s just my personal opinion. I have mentioned a hunger strike, which I believe would bring mass media attention to our struggle but unfortunately I was the only one that volunteered to do so, I know for a fact this would trigger a ripple effect- one man did it before and it worked there’s no reason why we wouldn’t have repeated success on a grander scale.
To give people an idea of the influence these corporations have over the universities this is donations from the food industry to them. If anyone has any brighter ideas on what steps we could take to get this condition recognised then go right ahead.
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Ruined hormonal systems is a world wide issue. It’s affecting everyone.
Young women are screwed from birth control and excess estrogen too. Most young women I know complain of a litany of health issues.
This is bigger than us. This is a worldwide hormonal problem that we haven’t begun to scratch the surface of.
Once you get some traction behind this movement, people from all walks of life are going to latch on.
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We need research on our propecia, Accutane, and SSRIs now. Not hope that one day 50 years from now someone will start to confront the regrettable effects of hormone disruption generally. Look even within our community itself. Over ten years now and we still haven’t grappled enough to actually do anything. Still sitting around complaining and spending money on herbs and any number of other half-baked Internet quick fixes instead of contributing to research.
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I agree. We need research now, preferably tons of it, done on a mass scale.
But you need funding for that level of research, and you don’t get funding without mass public attention and support.
We won’t get recognition from anyone until we have scientific evidence that we exist. It’s just the reality of the situation. That’s why we need to step up ourselves and stop complaining that others aren’t doing it for us.
A good start would be to prove the existence of the condition. A collection of letters and forum posts sadly won’t do that. Any clinician will want numbers, statistics and facts, not anecdotes and stories.
Fortunately, you’ve found yourself at the biggest patient research programme there is.
Fill out the survey.
We are already generating interest in the scientific community. We are already showing that PSSD, PFS, other post drug conditions are creating the same problems - almost like they’re the same thing. If we find that accutane, Finasteride, SSRIs and other drugs trigger the same condition, we have something big.
This forum has years of “we need a journalist” or “if this celebrity listens”
What we don’t have is years of real research and the progress that brings.
First step for anyone who wants to try and solve this, for anyone who wants to help is fill out the survey*.
It’s one hour.
*If your symptoms have persisted 3 months after cessation.
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we are currently sourcing funds to do our own private studies.
thats what the survey is for. we’ve had a PFS guy go on TV on mainstream news- no one cared.
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They already know full well about endocrine disrupters- the BPA from plastic bottles alone disrupts estrogen signalling and was what Kylie Mongue contributed to her breast cancer-it is a massive issue any endocrine disrupter big or small can have detrimental consequences on biological organisms but Finasteride specifically is detrimental; a chemical that obliterates one of the most vital male hormones completely and the fact it’s a non competitive inhibitor further increases the risk and honesty it is absolute madness that this was ever marketed for hair loss complete and utter disregard for safety. Everything would change in the flick of a switch if everyone here did their own part to make a difference instead of just talking that’s a fact and a commonality since this site has been alive there are a few exceptional people here that stick out from the roster that are doing a wonderful Job. 5 days ago I had packed my bags to travel to London, I sped down the motorway to Belfast to catch the flight, I was already extremely sick as my condition deteriorated and felt like I was dying (literally) so I thought If I was going to die I’ll do it outside the MHRA, I had my passport there, a sleeping bag and everything all set until I was rushed to hospital after almost crashing the car with severe stomach pains, blurry vision and started showing signs of psychosis and was guarded by police officers outside the hospital bed as my condition had greatly worsened but make no mistake I would be outside of that government building today fighting because at the end of the day they know full fucking well what is going on here. They have killed too many men and gotten away with it Scott Free and I have seen the pain that they have left behind after meeting a mother that lost her son to this 2 days ago. There is honesty too much talking here, we should do A, B and C while sitting here disputing with one another. My personal Facebook is covered on what Finasteride has did to me, I made everyone aware, I made a personal video uploaded to YouTube, reported my side effects to the yellow card scheme, had contact with MHRA, did the survey, bought the DNA kit, contacted various media outlets everyday for months on end and created a group page on Facebook with a following of 1700 members, I had also purchased £1000 of camera equipment that I was going to use to make videos but I’m far too sick for that right now. I’m on the extreme end of PFS and now have Ménière’s disease, I’m struggling to keep my eyes open as my brain and body turn into mush but I’m here trying to muster up ideas and people here telling me why it won’t work but seem to be more optimistic when it comes to getting the president who might be the busiest man in the world to care about PFS.
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Im completly agree
Edit: I just realized I responded to a post over 6 months old.
I do agree that there is too much debate and pessimism concerning activism. Sure 99% of all these ideas might not work or result in anything substantial, but at least doing them is more productive and may produce more than not doing anything and constantly going against a plan by having an alternative “better” plan, and executing none of them.
Admittedly though, I’m not any better.
From what I’ve seen, some members on here are or have been lawyers and accountants and such. Maybe you can send a message to some of those guys personally if you need help with writing things out more professionally.