I wonder if it’s possible to just go after the FDA in a lawsuit first then go after Merck last?
It would make more sense, after all they approved the drug and they even had the label changed multiple times.
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If you can prove that you have altered neurosteroids or methylation of the SRD5A2 gene and that finasteride was the cause then this would be a colossal case that is if it doesn’t get thrown out of court before it reaches trial. You would really need the likes of Robert Melcangi speaking on video link about his findings in PFS patients to convince the jury and it wouldn’t hurt to have a geneticist that has looked at the studies and have him provide evidence also maybe Goldstein too.
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Goldstein can’t really do anything from what i’ve seen. There are drs who offer treatment like goldstein, and then Their are doctors who can offer real irrefutable evidence like melcangi. Big distinction, especially legally. I have actually emailed melcangi multiple times about trying to get a 5ar2 and androgen receptor anslysis. He says he doesn’t have any studies currently regarding those.
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Goldstein would still be a credible source as he has examined many PFS patients over the years however Melcangi would be your best bet in terms of in depth knowledge regarding the studies. It’s a shame the foundation couldn’t set up a way for us to get these tested it would benefit everyone and is the only way we can prove causation in terms of the depletion of neurosteroids which is obviously a huge medical injury.
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We shouldn’t be talking about things we wish the foundation would do. We owe them. They have given us an incredible amount for nothing in return. We should be talking about how WE can make these kinds of things happen for the community.
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I am wondering about the chances of a trial concerning PSSD as it is now accepted by the EMA and some important opinion leaders of the German medical community such as university professors/psychiatrists. For now, maybe an even clearer diagnostic picture is needed depicting correlation and evidence.
As I said in another thread I‘d consider it useful if admins and mods would get in contact with the German PSSD group to exchange some views on eventual common efforts as they are now in contact with scientists and doctors that apparently do have the sympathy to help and to set something up.
The foundation is already in contact with Robert Melcangi that’s why I thought it would be reasonable to suggest the idea. Since you’re talking about helping the community why don’t you post a video talking about your experience that would be a huge help.
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My job doesn’t make it possible to make videos on YouTube talking about my sexual dysfunction but I’d love to see yours. What’s the link? I’ve done the survey and 
+ contacted a lot of people in other forum communities and Facebook groups recommending doing the survey. Any other ideas?
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That’s fucked up if your job would fire you based on your situation with a drug that caused you harm.
I’m going to make a video as well just suck at editing videos so I’ll have to do a one take. If we could get at least 100 of us here on the forum to make a video it would make a huuuuuge difference in our situation.
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Even more valuable would be if we could get people from different demographics and languages in order to be multicultural and less white male.
I’m Latino and middle eastern lol. Not sure what race has to do with this though
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Propecia, Accutane, and SSRIs affect all types of people so the videos should have all kinds of people. So I hope we aren’t disproportionately publicizing work to a Western male population.
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Okay gotcha I guess it makes sense.
Besides, and this idea has already been brought up, a „post drug talk“ with a popular youtuber may be quite helpful even in gathering donations. If one video for instance is clicked by about 300.000 people and 10 % are donating minimum a dollar that would make up 30.000 USD or more. Don’t know if that’s naive but I liked this Idea a lot.
People nowadays donate for so many things so why not for this good cause. Eventually 10-15 % of western population take SSRI for instance so many may relate to this problem. Finasteride is probably also used by thousands among the audience of any cool hip youtuber.
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I wonder if anyone knows someone at Vice or something like that. Anyway, it would be important to have a substantial amount of content before presenting higher level publicization possibility to anyone big.
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Vice had an article on sex and antidepressants and they also mentioned pssd but only briefly in a subordinate clause (I used google translate for „subordinate clause“ haha hope it fits).
Yeah Vice does cover many things like that so maybe we shall contact them.
Vice did a brief article if we could get a documentary about PFS that would be awesome to
Yeah it should cover the whole post drug spectrum. Maybe we should just contact them and see? It certainly helps that they at least acknowledge pfs and pssd. Not putting my expectations high though that they’d do a short documentary.
Anyway we may follow a couple of approaches - a foundation YouTube webchannel with patient stories is great when edited in a modern and „appealing“ way. However I suppose stuff like SEO/paying YouTube or whatsoever money to reach out more effectively to a greater portion of people would make sense. Simple videos without funded promotion rarely get huge audiences. It’s like with Facebook when you pay money so more people are likely to see your content.
You know the only true way to get scientists and real people to recognise this condition is to firstly stop hiding behind avatars. Fuck being anonymous, how will a video of you talking about an illness really affect your life or Job? If anything it will make people understand you better. If there’s one thing stopping this condition getting recognised it is the fact that people aren’t willing to speak up, like I said before there is no way that they could deny 100 plus video testimonials of people with PFS talking about their conditions in detail instead some hide in their bedrooms disabled and nobody will ever give care why? because it “doesn’t exist!” and the thing is Merck know that men won’t come out willingly and talk about this issue because it’s so personal but we can either wait for this condition to get recognised which who knows will ever happen because seemingly we’re all just a bunch of hypochondriacs running around playing victim or we can have people saying to themselves “wow, where are all these PFS victims coming from there must be more to this drug!” there is zero excuse except that one would feel ashamed, embarrassed and afraid of the reaction but ask yourselves is it better to be laughed at by a few toolbags or finally have PFS recognised as a real condition and have institutions looking into this phenomenon, I want my life back as does other but we can’t expect to be handed to us.
We need to show the human aspect to this disease or we can just let our cries fade off into the distant while these bastards continue to get away with murder. It’s a choice and the choice is yours, ask not what this foundation can do for you but what you can do for the foundation. So far from what I can see- myself, Douglas Mitchell RIP, and Paul Innes are the only people I can see that detailed our stories through video means.