I think contacting the white house has potential. But you if you don’t do it right then you are just being rash, emotional, blowing an opportunity.
At least get a good presentation of the situation organized. Some content for people to read. List of convincing publications, etc. Because we have failed to get research going, we are still in the category of hypochondriacs and nut jobs. So first prerequisite to reaching out is to come across as sensible, informed, balanced.
Do you know our current president? A tweet referencing a coverup by a judge and linking to the article has a better shot than anything sent to him officially through the white house. We are in the age of twitter presidents
No- just tweet him and link to the reuters cover up. He wont read melcangi articles, and maybe he will feel it has affected him too (as he has taken fin) and have sympathy. I really think if enough people tweet him he may see it and act. The key is to mention COVERUP and link the reuters article. That i believe could trigger his interest moreso than any official science, which he won’t read.
Dont mention propeciahelp. As much as we hate to admit it, there is honestly a terribly negative connotation with this website. Let’s not have him mention propeciahelp to whoever he asks about this, and be told we’re crazy. Let’s just link to the COVERUP and show the article and maybe he’ll take definitive action to uncover the hidden articles.
Who knows if any of that crap is true, the press is always trying to say there is x y z problems between Melanie and Donald and that he is about to get dumped or whatever else 
Was the link you sent him correct? This one doesn’t give me anything but I’m not in US maybe it’s blocked.
I’m in favor of a mature outreach to the White House but if this forum’s idea of how to get a cure is tweeting the president and acting like maybe he has PFS then we’re going to be sitting here rekt for another 10 years.
I think this is an idea that should be avoided for a number of reasons.
There is a very, very small chance that Trump would see the tweet(s). There is an even smaller chance of him replying to it/sub tweeting it.
In the event that he did respond to it, how could you be sure it would be in sympathy or support? Trump is famously unpredictable; he could easily tweet something like “I have heard it said that Propecia makes a man less of a lover. I can assure you that Melania is very happy. Not a problem here!”. Worse, he could call us liars/hypochondriacs and point to the fact that Baron was conceived while he was on the drug.
Trump went after pharmaceutical companies chiefly over their pricing of drugs, probably because it’s a broad issue that affects practically everyone and is a safe vote winner. That is very different from him bringing a very rare disease into the public consciousness. There are few votes to be gleaned from something like PFS.
If he expressed sympathy for us, the media and/or social media users could focus on PFS as a stick to beat him with and play up on the misperception that we are “crazy” to smear him by association.
@Cman It’s good that you (and others) are trying to think of things that can help our situation. I think ideas that involve our disease being brought into public exposure should be analysed and refined on this forum first before being put into the wider public. For example (and I understand you were trying to be to the point and impactful within a “tweet” format) this line in your tweet
is problematic. If somebody who uses Finasteride without issue sees that tweet they might think you are lying/a hypochondriac/pharma conspiracy theorist. Finasteride doesn’t destroy the sex drives or function of the majority of the men who take it. Not even all men with PFS have impaired sexual function. A statement like that further misrepresents our condition as primarily sexual when it isn’t.
I don’t think that’s true. I think it could also harm us. If people search “post finasteride syndrome” in a Twitter search and see people from our community in Trump replies it could add to the sense we may be crazy/conspiracy theorists, particularly if people from the medical community are searching it. There are a lot of crazy people in Trump tweet replies; we don’t want to get lumped in with that crowd.
Everything we do in the broader public sphere must be considered very carefully and scrutinised properly. Reforming our public image and representation will be key as part of the initiative of this forum to switch to outreach in the new year. How our problem is perceived and characterised to the public is very important.
I don’t mention that he has pfs- that would be dumb. He’d see that as an insult. This is my exact tweet
@POTUS @realDonaldTrump finasteride (propecia) destroys the sex drive, sexual function even after stopping. At 21, it destroyed my life. No one holds merck accountable; Judge Cogan even let them COVERUP from public https://www.reuters.com/investigates/special-report/usa-courts-secrecy-propecia/ please help hold BIG PHARMA accountable!
Edit: updated tweet
@POTUS @realDonaldTrump finasteride (propecia) destroys the lives of young men, even long after stopping. At 21, it destroyed my life. No one holds merck accountable; Judge Cogan even let them COVERUP from public https://www.reuters.com/investigates/special-report/usa-courts-secrecy-propecia/ please help hold BIG PHARMA accountable!
Ok, that is why i don’t say anything that is crazy- just link to the factual article from reuters that is a coverup. Not wanting to be seen as crazy is why i wont mention propeciahelp. I agree that mentioning sexual dysfunction could backfire, i’ll change that in the future. Youre absolutely right about him saying that it isnt a problem and moving on. My main draw is the coverup. But reuters article is not a crazy conspiracy, i’ve avoided saying anything that could be seen as a crazy conspiracy.
Ultimately, tweeting at a president for help sounds dumb, except for the fact that THIS president has given PARDONS cause of twitter, invited people to white house cause of twitter, and much more. Twitter is a valid method of contact for him. Message the white house, and what we send will be written off as sent by whack jobs in two seconds by underlings who will never even set this before him.
I’ve just found these tweets. There is a spelling error in one of them and the handle from which they are tweeted from has MAGA in it. Do you see what I mean when I speak about talking things through on here before putting them into the public sphere? Trump will very likely never see these tweets but somebody searching on Twitter for information on finasteride and/or PFS will easily come across these tweets and see it associated with “MAGA”, a politically contentious slogan which implies support for a President who divides opinion like no other before him. Is that the best way we could be representing our problem?
I just don’t think he has time to read articles like that. He’s running a country and being freakin impeached. I think Trump is the most likely president that I’ve seen to be willing to not bow to big pharma, but you’d have to reach him through a different channel than Twitter. There’s too much noise there and I think he really just uses it to bypass partisan media that he doesn’t trust to report him correctly. He’s not using it as a town forum or something. He’s just not going to have time for that. There are only so many hours in a day.
However, if his administration is looking at ways to make pharmaceutical industry more honest and better for people, then I do think some kind of sensible, well presented, well informed outreach to people in his administration looking at that kind of thing might be worthwhile.
Instead of tweeting how about we show up at Merck and Co next year and do a hunger strike right outside their doorstep, it’s been talked about here before but never initiated, I remember there was one guy that did it though. The biggest question for the media would be why would these men travel across the world to do something so drastic, there must be more to this issue than this company is letting on and it wouldn’t look good on Merck’s image either if men were sat outside starving themselves because of a hair loss drug. The hopes for this would be mass media attention!
Who cares what people think… i figured with maga in the handle, he would be drawn to answer it. Feel free to make your own handle and write your own message.
Maybe for most issues, but they see PFS as an instant quackjob crazy issue. The whitehouse would never give it the time of day. You guys underestimate how crazy the mainstream sees PFS as.
Given that you are attempting to appeal to “people”, it matters what people think.
No, i am appealing to “the president” to apply pressure to Merck to unseal the documents.
There’s something called separation of powers that makes it so that the executive doesn’t control judiciary matters. You are kind of on a runaway train here. Please contain yourself or you’ll make the rest of us look bad.
What? You sound crazy. I very much understand separation of powers… yet the president applied pressure and big pharma was dealt with in other manners. If he draws attention to this issue, it would help- even if he can’t command a judge to do anything. I am not making anyone look bad by appealing on twitter to a president who is famous for actually checking his twitter an unhealthy amount.
Edit- notice i said pressure to merck in the previous response, not to any court system. He can apply pressure to merck. The FDA falls under the executive branch, a government institution that Merck needs in order to conduct business.
You are being disingenuous with the purpose of this post… I have flagged your posts as inappropriate and hope the Moderators take notice and remove it…
I care. As a PFS patient, I care what the public thinks about PFS.
I’m not criticising what you’ve written to be mean to you. I’m trying to convey to you that what we do individually matters when we’re representing the issue to the broader public. If somebody finds it objectionable that we ought to at least review ideas like this on this forum first can they explain to me why they find it objectionable?