It is right to raise funds between PFS / PSSD / PAS, but most of us can no longer work and we will never get enough money. I wondered if it was possible, perhaps through the foundation, to contact as many rich people as possible. For example Hollywood stars, sports stars, or great CEOs like Elon Musck. For them 10000 dollars are nothing, but for us they can make a big difference.
False. Most PFS sufferers are able to work.
I’m unable to work. I’m phisical exercise intolerant. If I try to train, even light training, I feel my muscles destroied, like an injure. I’m a mechanic, so I can’t do my work. My head i also fuc*ed up: I’m like an 80 years old man with Alzheimer.
Yes but then you are an extreme case. You said that most PFS victims can no longer work.
Let’s keep it on-topic, guys.
The idea is worth discussion.
Not a row over who is too ill to work.
Let’s focus on the topic.
I think we’ve spoken about this before.
If anyone has a direct connection to Elon Musk or Jeff Bezos or anyone similar, do let @awor know. If you work for a company which makes charitable donations, put the PFS foundation forward.
If you know anyone who wants to help people in any way whatsoever, we’ll take it. If you know people who can program, design, promote, anything, we need them.
Someone who speaks good English should write a format to send messages even on the social profiles of these people and we have to be many, because not everyone reads.
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.
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!
@Sibelio mate I was expecting a classic nihilistic rant here :).
Your optimism is killing me :).
I actually try to be realist and I seek the truth whatever it might be. Unfortunately that often looks exactly like nihilism.
Was pulling your leg of course…
I am in a light mood and that is quite rare actually :).
Great to hear! After intense periods of suffering, relief always comes (waves and windows).
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.