If somebody can write a messagge in English where ask some help to an important person. And give explain me how to do donation to foundation, I will try to contact all sports stars I know on the socials. I put my face. Please guys, with our donation we can’t go so far. Too many time corrupt doctors stole our little money. We need someone much big that support us, we need all people knows what this hell is. I want live my life again.
I think the first step to major fundraising is raising high profile awareness about PFS. The best way to do this in my opinion is through a deep and detailed article about PFS written for a publication such as the Atlantic, The New Yorker, etc. This will give us legitimacy and also the attention of the world’s elite - medical, regulatory, political and financial.
The article needs to be of the highest professional quality possible. One example of such an article on a similar topic is this multi-chapter piece on Risperdal.
A piece on PFS would be no less rich than the one on Risperdal as the story of PFS has everything in it - mystery, tragedy, corruption, crime. If written well, it will touch upon topics with universal appeal - modern medicine, public health, modern drug approval process, psychology, the banality of evil…
Writing such an article will be no small effort, but I believe this work will have the highest rate of return for our community. After the publication of the article we will have the legitimacy to approach various organizations for help.
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I’m not english, I just use a translater most of the times.
We need someone who start to write. We are hidden on this forum, we need to get out and make people listen our voices! If we want our lives back, is better start fight!
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@Sibelio mate I was expecting a classic nihilistic rant here :).
Your optimism is killing me :).
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I actually try to be realist and I seek the truth whatever it might be. Unfortunately that often looks exactly like nihilism. 
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Was pulling your leg of course…
I am in a light mood and that is quite rare actually :).
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Great to hear! After intense periods of suffering, relief always comes (waves and windows).
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Got drunk at a party yesterday and have a rush of allopregnanolone today!
Have you tried reaching out at nemsn.org about 5-htp? It’s possible that both SSRIs and 5-HTP had a synergistic effect on your body.
Also, I would recommend we add to our survey if PFS has contributed to unemployment. I’m sure it could have impacted some to the point of quitting job (as cited in multiple legal websites).
A bit of a stretch. No way of knowing whether it was allo which was the cause.
My employer will match my donations to the PFS foundation. I only committed to donate $20 a month at the time (I was considering $50/month and my employer will match up to $15,000/year). The PFS foundation had some trouble setting it up and said that it would be helpful if I could get an actual human to help out. I contacted the payment processor, Benevity, and they tried to contact the PFS foundation unsuccessfully who did not take their calls. But after many emails to the PFS foundation, they were unwilling to setup to receive payment from Benevity due to security concerns.
Hmm. That’s interesting. Thanks for passing that along.
I think it’s critical to be grouped in with women as well, rather than having it be perceived as something that only afflicts vain men who took risks to have artificially nice hair. In this day, it’s actually considered acceptable to say that 50% of humanity is toxic because of their gender.
This should be called PES or whatever people could agree upon — something that ruins the lives of men, women, and children equally.
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I’ve always maintained that the best way to get the syndrome recognized is to stop attributing it to a drug. In doing so, we would also avoid Big Pharma interfering in research, as many have said lately. A neuroendocrine dysfunction syndrome.
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I’ve always wondered how much resistance we would face if this condition wasn’t caused by pharmaceuticals. If it was just something that happened! It’s a shame that it’s an undeniable fact for most of us that a drug caused it.
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Interesting thought.
I think you almost need the right doctor to suffer from it. Then they will be motivated to understand exactly what it does or did to us. For all of the issues I see us dealing with it obviously seems like some sort of hormonal shift. But Im no doctor or scientist. But if it affects ejaculate size, sleep, mood, penis size, libido… And unfortunately a hormonal shift like that sounds extremely difficult to change. Not losing hope. It could be one area of our system which needs surgery to fix plus meds. But who knows. Im sorry you can’t work. Ive been lucky and am doing alright. Not 100% but pretty good.
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Facts! I agree with your statement! At the end of the day, we are guessing what our problems are based on limited research (unfortunately). We need research done to realize the full set of our issues.
This is very important indeed. Others have proposed the term PEDS - Post Endocrine Disruption Syndrome. I think there is a thread about this topic.
It should be our primary goal to unite all PEDS sufferers on the same forum so that our numbers go up, and I think our admins are working towards that. This of course will be challenging since the different demographic groups experience PEDS differently and have different concerns, as others have noted. I don’t know if it would be feasible to create separate sub-forums on PH for PAS/PSSD patients, or teenagers, or women…
The other thing that will be very useful for our cause, which will be helped and highlighted by including women, is to stop associating PEDS in men with erectile dysfunction primarily. This condition is first and foremost a loss of sexuality which is a lot more than ED. Those of us who are severely affected are all but asexual, which is a malaise of one’s “soul”, not one’s sex organs.
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I disagree.
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