GIXXER wrote:
Honestly Im a hair away from being done with the forums. All this time and we are not a step closer to anything. There has been NOTHIN concrete to come out of here. Every time someone tries to push for anything its lost to mile long threads on freaking herbs. Seriously?? that's the only interest on here??? Never ceases to maze me how people got screwed by taking a pill.. yet they wont hesitate to pop anything in their mouth some anonymous person on the web suggest. All comes back to.. screw science!
Hey..hey...SJW and ashwagandha (and even licorice) aren't just "any herb"...they do have some benefits...
Joke aside, yes I do agree about most of the things mentioned in this thread. But I also believe part of our problem is the fact that we're spread out all over the globe... even if I do believe most of the forum users are from the US
There's just over 900 members on here. Sure some arent active anymore but as an example lets say all 900 spent 1hour a week on doing something towards activism and awareness. Thats 900 hours. Lets say we took those 900 hours and focused it on one media outlet like vice.com to do a news story on PSSD or campaigning to get Dr Healy on the Joe Rogan Podcast to talk about PSSD.
Then the week after sign up a twitter account and post on high profile peoples with lots of fellowers the dangers of PSSD. 900 people twitting about PSSD on a celebrity's profile when they say they suffer from depression could have an impact.
Then maybe another week we could make up pamphlets that we could print at home. Take these pamphlets and leave them in public places.
Post on local community forums to bring more awareness to pssd. I believe theres many more suffers that don't know what PSSD is yet. Ive posted about it on a local forum in my area. https://forums.castanet.net/viewtopic.php?f=95&t=80793
GIXXER wrote:Ive always said we need more activism. Whether it be doing form style emails to doctors and media outlets. Social media sites like Twitter and Facebook.
No one seems to get want to do anything though but sit around and complain about how shitty their lives are and dont know if they can go on anymore.
What good is an organization going to do when we.cant even work together to get pssd into the mainstream media. Lets say we did get an organization together what will it do?
And how many times has it been hollered for? And how many times has it been met with silence?
People love to bitch and moan that no one will listen.. nothing can be done.. we aren't profitable to drug companies... Yet when I brought up orphan drugs I get nothing in reply.
Honestly Im a hair away from being done with the forums. All this time and we are not a step closer to anything. There has been NOTHIN concrete to come out of here. Every time someone tries to push for anything its lost to mile long threads on freaking herbs. Seriously?? that's the only interest on here??? Never ceases to maze me how people got screwed by taking a pill.. yet they wont hesitate to pop anything in their mouth some anonymous person on the web suggest. All comes back to.. screw science!
Fortunately it's not correct what you say. Many of us did something allready. Ghost created this forum which gives all of us the possibility to communicate all over the globe. Corragio financed a whole research study on his own. I tried my best to get this Study in Ulm going but it didn't work oit because we had too few participants. At least we have this organization now that i ve been talking about. We just need to keep on doing more and more for our goals. These are just very few examples. We need to Try hard to put into practice any of our ideas that might eventually have a slight positive effect.
Maybe we could make a list of our ideas that could lead to a better situation for us. And then talk about who of us could do which step. For example a legitimate website for our association. Who could help out there? Who has the skills for that? And who is able to create an American oder Britan or international organization (if thats even possible)?
I would like to write a reliable form letter to as many doctors, hospitals scientists and media as possible in the name of our association as the next step. They will take it much more seriously than if someone would write it on their own. Definately. But then they will check our website and if it s not very good and serious, they might ignore it.
so who wants help? Also with the information in the letter. And who can create an organisation in the US?
The best case would be to create an international association or one for each country and then connect them through a website where you can click your language flag. That's what I imagine. And then put as much serious information on the website as possible. Statistics about symptoms and medication that has been used etc. And of course quotations of doctors who accept PSSD would be great. Maybe also descriptions or statements of PSSD sufferers.
The PFS page is just a perfect example I think. If there won't be anyone who would do it, maybe I should try it myself to make a website. But I don't have any experience doing it and I fear it might look awful if it even works at all.
Maybe I could help with the website, but on the hobby - not pro level. Maybe the old one with little redesign and some new sections would make difference how it looks and feels. Getting a web registered and having a solo hosting is necessary too - free hosting webaddress looks shitty for a serious organisation
I also agree that getting a US based organisation is the main point here - there is all the influence and power. Or am I wrong and would Germany based organisation be enough? Maybe a US based mother org for USA and other countries with sister Germany org for European Union influence, that sounds better
sulawesi wrote:The best case would be to create an international association or one for each country and then connect them through a website where you can click your language flag. That's what I imagine. And then put as much serious information on the website as possible. Statistics about symptoms and medication that has been used etc. And of course quotations of doctors who accept PSSD would be great. Maybe also descriptions or statements of PSSD sufferers.
The PFS page is just a perfect example I think. If there won't be anyone who would do it, maybe I should try it myself to make a website. But I don't have any experience doing it and I fear it might look awful if it even works at all.
But then an association is already present? Why don't we use that for now? Would it change a lot having it based in the US?
Lots of question.
I think we should also create an international what's up group to discuss about this thing...
I think we should have an official Face book page. Its better if we can boost a post world wide to inform and attract sufferers for our course.
most of the pharmacies in the every village worldwide have SSRIs. So PSSD has to be more common than just 900 members here from worldwide. More people mean more opportunities in every angle.
The reason our message is not going to world wide is the language barrier. Largest countries in the world has less usage in English. for example China, Russia, India and near other Asian countries. So we should localize our message through our forum members who are native in those areas.
dann888 wrote:I think we should have an official Face book page. Its better if we can boost a post world wide to inform and attract sufferers for our course.
most of the pharmacies in the every village worldwide have SSRIs. So PSSD has to be more common than just 900 members here from worldwide. More people mean more opportunities in every angle.
The reason our message is not going to world wide is the language barrier. Largest countries in the world has less usage in English. for example China, Russia, India and near other Asian countries. So we should localize our message through our forum members who are native in those areas.
You have to keep in mind that this condition is not something that everybody would like to be offcially associated with. It can be embarrasing to be visible that You post online such things among other people under Your name. Thats why we need an official organisation where only few that do not have this problem to be associated officially with PSSD would be officially behind us - annonymous ones.
