So, everyone is fine just living with this then?

General Discussion
#1

Hey everyone, it me!

We only have 2 people for the YouTube Video, we need 2+ more for even anything to get off the ground. We really need something professional looking for people to take it serious. A clean video put together with damning facts and in your face devastation. Something edited intelligently for maximum impact. This has never been done before and people are not going to be clicking on gloomy dyi videos on YouTube of some guy winging about something that they don’t care about because of low quality. Doesn’t anyone here want to make a difference in their lifetime, work towards making their life worth living again?

Here’s a call to those who are desperately needing to find a cure, the worst of us. This is your perfect opportunity to show the world what this really is!!!

Ryan’s not hanging around here anymore but for some inspiration I’ll show you some of the comments from his pictures and videos he continues to post.

PUSH YOURSELF, it will be worth it in the end. No one will do this for you.

If anyone has some input for the mods regarding the video, post here!! Let’s all get involved and make this thing possible. This is a community thing, there’s no separation between mods and users. We are all victims.

:heart::heart::heart::heart::heart:

Also people are literally asking to donate even though Ryan hasn’t asked once.

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8 Likes
#2

I really hope that one day people realise the need to contribute to these community projects

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#4

I can understand shaming for not doing the survey or 23and me project (which I still need to get done) but this kinda thing seems like it needs to be on a volunteer basis

#5

It is volunteer basis. I don’t see this as shaming but just a question everyone should be asking themselves. I’m well aware this is a much greater contribution than a 20 minute survey. I know lots of people have solid reasons why they can’t and I wouldn’t encourage them. I know out of the thousands of people here someone must be capable. This is directed as some form of encouragement to those people, hopefully. I’m sorry if you were offended. I just know that this is the single most important thing that we could do for this cause. There’s suicides on this board every year because of the lack of progress.

Anyway I had a few messages last time so I’m just trying to get those people out of the woodwork who feel like they could contribute.

If that’s not you that’s fine, I’m not out here writing names or anything.

If I can get even one person to sign up I’m happy. That’s my only intention. I know a lot of people here don’t see the value in a YouTube video and I’m trying to bring that to light. Every business fails without marketing. Our business is finding a cure and we need people to see us. We can’t be hidden, that keeps us where we are. Some dark corner of the Internet.

2 Likes
#6

So the aim is 6 people right?just finasteride or also ssri/accutane etc.?

Im also wondering what happens as soon as we reach the required completed surveys. Will there be a renewed objective of let’s say 250 finasterid affected (50 more then) or will we settle with the (in total then) 350 completed surveys and use these for further collaboration with researchers?

#7

Hey hey! They need 4 minimum for fin, 6 would be amazing. Right now 1 would be fab hahah. I’m looking for people willing to step forward for PSSD and Accutane aswell, I think 2 each would be great!!

For the surveys you would have to ask the mods, I think if you look through @axolotl posts he mentions 300 for fin and 100-200 for non fin. I think these are the numbers wanted for scientific relevance.

#8

Makes sense to me to get as many data as possible however this may take another year or so won’t it?im not questioning the admins efforts as i deeply appreciate their hard work but I see some risk that people may get a bit impatient if the objectives will be continuously raised.but maybe I’m wrong about that

#9

I could totally be wrong but I think that although these are the objectives, they are working to find relevant scientists as of now. No one is sitting around and waiting a year for these goal numbers, they just help us. They are ideal. Right now 36 for Accutane seems weak, if you know what I mean. People can just turn around and blame psychosomatic placebo effects. I think the numbers are growing ok as people are reaching out to other forums and platforms, if we can continue doing this.

1 Like
#10

I perfectly agree that we should have a strong statistical evidence and the current objectives shall be reached the quicker the better.im also reaching out to the pssd community,some have already done it which is great while others don’t seem to be interested - which I don’t get to be honest.it makes no sense to me to leave out a chance that may lead to positive change.

2 Likes
#11

Yeh I get why a survey doesn’t seem too exciting in the quest to finding a cure to some. If you haven’t already maybe link to the post where it talks about the relevance of it in meeting up with scientists. Thanks for being active, I love it when everyone’s working together. We have way more power.

1 Like
#12

@malfeitor, this is the general gist of things, don’t feel like this is directed to you, it’s just a statement of how things are, since a few people ask every now and again.

The targets are sort of arbitrary. It’s not the case that we have a team of people who are saying ‘we will do X or Y, but not until you have 400 surveys filled out.’

More data is better is the short of it.

Interested scientists will be more likely to engage with our message if we can more decisively prove that something is going on.

If we had a million survey results, we’d probably already have more research underway. As is, we just need more data. The conversations our admins have had with scientists the last few months have highlighted how important the survey results are in proving the case we have, and so everyone here who takes an active role in getting more survey data can consider themselves an active part of the effort to deliver a treatment for this condition. Everyone who has so far ignored or refused to take the survey could be considered as holding progress up. Sorry if that seems dramatic, but arguably it’s true.

If you’ve done the survey, well done, that is brilliant. Thankyou. Now, can you invite 3 people to take the survey? Can you do it on Reddit, Twitter, Facebook, your own social circle? Can you share our social media posts. Can you make a video? What skills do you have? Can you help?

As you can see, if you actually want something to change, nobody is doing it for us. Taking the survey isn’t a contract for a cure by a particular date. Unfortunately this falls to you. The admins are doing all they can. What about you? Are you helping or are you waiting for someone else to do it?

3 Likes
#13

Hey thanks for your answer I perfectly agree. As I wrote before I’m continously reaching out to the pssd community kindly asking them to do the survey and pointing out the efforts of the ph team as well as the benefits of completing the survey. Frankly i don’t feel like making a video or „going public“ at the moment for my very personal reasons but I’m sure you understand that. I’m impressed by those who do it though.

2 Likes
#14

Yup already did that and still doing it

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#15

Work goes on every day, right here in Berlin.

Everything’s going to be fine. Right now it’s calm before the storm.

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#16

What haha I’m confused, is the storm a euphemism for change about to happen?

1 Like
#17

I agree. I have PSSD no PFS but if we/you can’t make a simple well edited contributed awareness video then in modern times what can you expect to change?

This should be a minimum requirement. Staying hidden in the dark corners of The Internet is exactly how the drug companies exploiting like it.

I am happy to take part, in fact I was expecting your one to go well that would hopefully then inspire the PSSD people because you look more organised and have a good website. Let’s get moving and change something or just die in pointless abject suffering and obscurity. Besides can’t we hide our faces and voices if required…

1 Like
#18

No, unfortunately not. We think that it’s crucial to the success of these videos that people don’t hide themselves. The power comes from putting an identity on this. Hiding identity is part of hiding in the dark corners of the internet as you put it. Stepping into the light is what this project must be about.

#19

I largely agree but I understand some people’s circumstances it might be a little harder than mine. Surely if a lot of people are not hidden then a few could be behind a curtain?

That was my plan initially when I made this placeholder video called hidden identities for us with PSSD but no one was interested in even that :-(.

Let’s all raise the stakes I hope to see the PFSs one soon and then the PSSD too!!

2 Likes
#20

Well, I think we have one video so far.

#21

@fema4psychiatrists, that’s sad. If you are who I think you are, you went out of your way to put yourself in the spotlight for the sake of bringing attention to PSSD.

Wish there were more who joined you.