I don’t see a reason why merck and every other company would not ne interested in a potential treatment. If there was a treatment for pfs there would be little to no concern in taking in since every side effect is easily reversable which then leads to a significant increase in sales. The companies itself should fund scientific research to help themselves and I wonder why they dont. Anyone any thoughts on this?
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By investing money in a treatment they are admitting its a real illness which would open the floodgates for a monstrous amount of lawsuits and would 100% have a huge impact on their profits. It is in their best interest to deny as much as possible the same way the NFL football league sweeps head injuries under the rug.
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If this syndrome turns out to be the result of anti-androgenic action, I believe that there will be a huge interest, as the pathways of endocrine disruptors and our syndrome(s) merge. We’re still a long way down that road though. Currently, the commercial interest is zero.
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Do you have any sense of what the next step on illuminating what our issue might be is? I know we have our survey and that might enable receipt of funding to start some new research. Is there anything going on that might provide major insights any time soon? Just curious what the is to look forward to short to medium term.
I also talked to my doctor about this. He believes in the condition but says hes 100% certain that it is easily cureable if research would be invested in it which makes it all the more frustrating
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Exactly we need the funding, shit if there’s a way we got this condition there’s got to be a fucking way to fix it!
Man, the worst part of this is the fact of many doctors doesn’t recognize this condition, it’s so bad listen “this i thing of your mind”, “this is stress”
Motherfucker, before i was health and don’t have any problem of ED and depression, How now my dick don’t get up until to FAP?
And see anothers doctors telling It and recommending this drug like the God of wisdom, saying PFS is bullshit.
Man, i think the best part after we get cured is see the “ass face” of this docs.
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It’s just human nature man best to ignore them
Of course if you want get a new doctor but doctors are humans and not perfect either
If a single literature they reference doesn’t say it exists, then it’s hard for many of them to understand it
Flaws are part of humans
I personally - speaking on behalf of nobody but myself - think that what is important isn’t the money or funding. That will be important in time but right now, it’s of greater importance to establish that there is a problem. We collectively acknowledge that many doctors have never heard of this problem, that this is a bigger problem than is reported and we know that we need more visibility.
The idea that if we got a big pile of money and would then be able to buy a treatment is fanciful, imo. The scientists who we would need to research things are in shorter supply than you might think and are not driven solely by money.
Forget the money, we need to start proving we exist. We need to create the evidence, promote our cause, reach out to other groups and come together.
Step 1 in getting the condition recognised: take the survey.
Next time you go to the doctor, it might help you if you’re able to say “here are 500 people all reporting the same thing, this is the clinical data”
Next time we try and convince a scientist to work with us, it will help being able to say that this syndrome is triggered by a number of substances and conditions, here is a chart of 500 people who have had the exact same experience despite their trigger differing.
Be one of the people who spends one hour helping to get this condition researched and recognised.
It’s one hour.
If you’ve taken the survey, share it to social media. Use hashtags. Search the substance you used and share a link to our campaign. Ask people here who have been experiencing lasting side effects for 3 months why they haven’t taken the survey. Here: copy and paste this:
'hello, have you had side effects that lasted more than 3 months since quitting the drug? If so it is time to take the survey. Click the bar chart next to the search button at the top of the page. This is your chance to help research our condition."
There are people posting IN THIS TOPIC who haven’t taken the survey. THIS IS RESEARCH. Everything builds to something. Be part of it.
Or, sit back and let someone continue to make money off ruining people’s lives.
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After i posted this on Merck’s Facebook page 2 months ago, they banned me.
Not just my fb profile is banned but any access from my computer to their page at all. Even when i sign in from a different profile.
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Holy shit they banned you from Facebook as well? They are the most vile and pure evil pharmaceutical company.
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That’s for sure they are. Also they are fully aware they are selling dangerous poisons. Obsession of money has damaged their brains in a different way though.
If you haven’t done the survey yet then please, please do so guys. You might not feel that it’s important, however its significance can’t be stressed enough. It’s a single hour of your time yet it’s quite literally the most effective thing you can do right now. Alongside that is the effort that the moderators have committed to creating this thing for us. It’s nice to show a bit of appreciation. Without the effort they commit to this forum we’d be alone in this hell and well and truly f*cked.
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I understand why you did it and that you did it with the best of intentions but it’s
no surprise really that that was the outcome. We should concentrate on reaching out to affected people and not those who are in the business of selling this stuff.
The social media manager who banned you probably has no clue of any of the specifics and just has to make sure the company isn’t smeared. If any of it registered with them at all, they’ll be aware of the drugs the company sells being approved and are therefore deemed safe. They will probably presume people attempting to say different are probably not acting sincerely. If they hadn’t taken it down, they’d have been fired and someone else taken on.
Attacks on these companies or the doctors or pharmacies that sell their products will likely get us nowhere. We need to make our own networks and spread our message.
Instead of posting on Merck’s page, it would have been better to encourage one more person to sign up here, or to have made a video talking about your experience. I’m not putting you down when I say that, just trying to get the best result for us all. Basically, if you’re going to do something, make it count.
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I appreciate that the survey might not be what people expect to cure this horrible condition. However I trust that Axo and Awor spent many hours with scientists discussing what we need to prove that PFS exists.
The result of those conversations was this survey and if successful we will owe these guys a huge thank you beyond words.
Axo is a very smart guy he didn’t invest so much time into something unless it was well thought out. He wants to be cured of this horrible condition more than most and we are very lucky to have someone of his calibre on our side.
Let’s fill in the survey so we can be recognised. Encourage others to do the same.
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Well said.
Hi guys whats happening with the BBC documentry that was being mentioned a few months ago?
Di Loreto found the AR to be overexpressed (2014) while Bhasin found statistically significant differences in a few of the androgen-regulated genes (2017). Baylor apparently found numerous genes to be deregulated (unpublished). From those results and what we know so far, it is clear that finasteride threw a wrench in the homeostasis of our cells, the wrench likely being epigenetic in nature. We desperately need to understand exactly what happened, so we can try to act on it.
Baylor was designed to provide at least an initial answer to the question of what went wrong, characterize the wrench so to speak. The Baylor protocol (study design) dates back to May 2013. As we know, they have not published yet, and I certainly am not holding my breath (anymore) to the day they might. We’ve got to move on, which means getting the answers that Baylor failed to deliver (so far).
As discouraging as this may seem, it also is an opportunity. The tech needed for this kind of investigation has evolved considerably since 2013. With today’s tools, we’ve got the possibility to get much better answers to more open questions. Another opportunity is to not only ask what finasteride has done to us, but also what antidepressants and isotretinoin damaged. Maybe there is a common denominator in there, which frankly would be fantastic. At least our survey results are giving us some hints in that direction.
We first need to find the right specialists and lab to work on our problem. The existing crew (Melcangi et al.) have reached the end of what they can usefully contribute. We now need next generation scientists who are truly specialized in the line of investigation required. @axolotl, myself and two other guys (PSSD and PAS patients) are working in the background to try to find these people and make what I described above happen. The Foundation is informed and has committed to support us when the time comes. In the mean time, please take our survey and put your donation money aside so you can help us finance this next step once we can present a truly promising, theory and drug-neutral opportunity.
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It was to be part of the Victoria Derbyshire programme which has now been cancelled. It’s possible that the researchers I was talking to will take the story to another outlet but I think we’ll have to concentrate on our own video project for now.
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I would like to asked awor if the foundation paid good money and helped with study etc…Couldn’t they sue over refusal of the information being made public? How do they get away with this?