I recently posted a link on my Facebook about PFS and I’m realizing that people truly dismiss this malady. So I started thinking… what if one of us made a video where we simply explain the illness and just fucking guilt trip people for not passing it on. HAHA… Here’s what I was thinking:
“Most of you will dismiss this as crazy because you don’t understand how it could even be possible. Neither can we. But as any people suffering from a chronic illness… we want a cure. If you truly care about me, you will pass this on.”
I dunno… something along those lines? Aren’t there like 2,000 active men on this board? If we all posted a link to the same youtube video calling for action… and maybe some of us tipped off the media… don’t you think we could get this to go viral?
I dont know if you have much luck there, especially due to the personal nature of our condition but its worth a try. I really hate it how some people just dismiss us, especially those in the medical community. I want to punch everyone in the face who says its just in our heads. And it for this same reason that I have cut off contact with a lot of people who I used to be close with, basically I only talk to people who understand my condition to a certain extent. Although most of them will never fully understand some of them are at least to the point where they realize its a devestating condition.
I know its terrible to say, but I’d rather have cancer and have to go through a year of kemo and dialysis and eventually be cured then have this crap, living everyday not knowing if I will ever be better.
i feel your pain @broken… and thanks for the link to that video. there are a few people that i’m really close to that i am going to show that video to so i can try and give them a better understanding of what its like…
what i’m really referring to though (perhaps) its maybe even some kind of grassroots campaign sort of thing. with a Youtube video calling for support from everyday people. like i could design a website where we link videos like that and perhaps start a fund for research or something?
i dunno - i’m sure everyone here is thinking “well - if you think that would help just DO IT and stop talking about it,” but i’m aware it is a very sensitive and personal subject for a lot of people so i don’t want to cross any boundaries.
you wouldn’t be crossing any boundaries as this website would be crossing boundaries if people were THAT sensitive if they didn’t want information going out .
i think you have a really good idea and it was something i was thinking about today as well. i could help you out with this if you want to get started. not sure where we could start though. i have a lot of knowledge on random website information. i know sources where we could get videos done, i could build us a website, etc.
although this website all ready exists, but it’s not really viral ready persay in sending across a strong message straight from the homepage.
maybe like a flashy, web 2.0 website with nice graphics all about banning this drug and trying to make it go viral? that would be interesting.
i was thinking about designing a website around trying to build a campaign slowly over time talking about the many different side effects of many different pharmecitical drugs. many people have many bad problems out there because of big pharm like merck of pfizar… seriously, it needs to be taken care of. i’m sick to my stomach of these uneducated doctors pushing prescriptions like it’s chicken noodle soup. they don’t care at all about what causes of diseases are and just push drugs.
i was seeing some show on foster homes, can you beleive they put some kids on like 5 anti depressents at the same time? is that some kind of sick joke? like these people are crazy, big pharm are the biggest crooks. some people yes they need them and there are exceptions, but right now it’s completely unnecessary.
The Men’s Health article (Dec 2011) outlined the basic condition for those not familiar with it quite well. Adding to this are the main site, other articles, scientific studies, and doctors pursing research into this condition. While your urge for social understanding and acceptance is understood, it may not be coming across in the best way or perhaps your friends wouldn’t accept it regardless. Perhaps you could try talking to your friends face to face instead of the impersonal interface of facebook?
Yes you are correct. And I have had discussions outside of Facebook, naturally… I guess I figure the more noise we make the better. Like why haven’t we organized a protest of Merck or something? I dunno - medical advancement is what is going to help us here and it seems exposure is getting greater and greater so I do agree with you.
