We need an optimist here not only people saying that current way everything done is the best we can do on everything.
I should say that when we initially spoke about this, I was very much in favour of using professionals to deliver a good result. The logistics of filming in multiple locations is a major stumbling block, and would raise either the cost of production significantly or the admin overhead significantly. Attempting to either fly crew around the world OR finding good people we can trust in locations around the world is just one major problem.
Thereās no reason why a second video project couldnāt take place after the first. It could be a good learning experience to make our own film and then work out what was good and what could have been better the second time around.
Perhaps people who would like to participate in the second project could do a self filmed video for the first project. That would ensure the first project gets done and that the second one could be even better.
This is just my personal opinion but I assume that sensitive content/a sophisticated message is more powerful when presented professionally. A professional PowerPoint presentation is often way more impressive than some standard slides.
But I might be wrong on this. Itās true that many amateur videos go viral but as far as this syndrome goes I thought a professional video would be better.
Anyway again Iām not an expert on this and Greeks arguments also seem plausible.
If youāre saying Iām being pessimistic, Iām actually very much in favour of a professona production down the line. I just donāt think designing the poster before we have people to participate is the right way to go about it.
As we apparently already have 2 video participants wouldnāt it be possible to post a āpreviewā/trailer that is 45-60 sec long and gives the community an idea how the later āproductā will look like?maybe this would motivate more folks to join.
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I think that people versed in the art of documentary making can make something much richer, cohesive, and altogether convincing than what weād have overall in a hodgepodge of sufferers recording themselves.
However, if the majority of people think we should at least prototype with the YouTube project then certainly I am in favor of that. Maybe we could stipulate that all of the videos will be kept private until a later date when things would be assessed over all and people could make final decisions on how much public involvement they want to have. Maybe the reason we donāt have any submissions yet is that no one wants them their videos on the internet yet. But that could change once they had a better idea that an actual valuable outcome could be achieved.
In any case, I donāt think it is correct that we should just do everything the same way as always right now. The YouTube project isnāt succeeding at all. Two submissions so far? Do we think thatās the best we can do and that itās a waste of time to discuss opportunities for improvement? We will never get a cure with that kind of attitude.
We need optimism and openness to new ideas. The old ones are not working. That should be blatantly obvious to all. This community is in the same position as it was 10 years. The current ideas might be able to work, but they certainly need at least a lot of adjustment.
This is kind of the attitude we want to avoid. Thereās a level of professionalism that has developed in this community over time. The mods arenāt going to chuck any old video on their personal Facebook and hope for the best. The people heading the project have a certain skill set which was necessary to make it look clean. I was never expecting magic to happen but I know if everyone on here reposts with a personal touch and emotional plea it will reach a lot of people. If it hits any mainstream journalists or media, amazing.
Scientists are not going watch it and call us up, asking if we need help from this. The point is to gain awareness which will make our problem seem significant and ligitmate. It will be ammunition for when our guys go and see the scientists. Making a small video could lead to a bigger video. Like you said a real documentary. But we want to get the attention of documentary makers by laying it all out there. Maybe we could get the interest of some people that could make something world class. We just kind of have to build to it and make these steps in order.
The reason people donāt want to do the YouTube video is similar to the survey. Everyone wants immediate results or they donāt deem it worthy, but we need to make necessary steps. I work in marketing and I do believe there is nothing else that will get people to pay attention.
Tiger king didnāt come from no where guys, film makers learned about him from lesser known documentaries and those documentaries learned about him from his own low budget Facebook marketing crap from his zoo. Thereās a progression here.
Iām very tired sorry if theres heaps typos its nearly midnight here
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Here are 2 suggestions I hope could be really strongly considered:
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Letās make a clear and concise explanation of what the value of the survey is and why PFS, PAS, and PSSD might share a common underlying mechanism clear to everyone on the forum. That way, everyone can be clear themselves and can be equipped to reach out to others to spread the message. Right now it isnāt clear enough and not enough people know.
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Letās make YouTube video project submissions absolutely private for now and letās encourage everyone to submit their story via video and dispense badges to everyone who has. That way we can see what we have and share it with documentary professionals in a manner not unlike we share the survey results with scientists so they can see what they are working with. Nobody is submitting right now so the current approach isnāt working. Keeping them private would eliminate possibly the principal reason no one is submitting right now. Just to clarify: All videos would be absolutely private for now except could be shared with documentary makers at a later date possibly. Then the documentary would be made with newly recorded videos, so the YouTube project for now would be not unlike private castings. If we wanted to do something else with the videos down the line then we could always write back to their submitters to request authorization. If we get a lot of great stuff and it looks like going public with videos like original plan for YouTube project held, then we could talk to submitters and see if they agree to making public.
Yes there is nothing wrong with the YouTube project except that no one has submitting anything to it so we need to fix that. I think a documentary down the line would be even a lot more powerful. But YouTube project in itself already has value. Best of course would be both. But the YouTube project effectively doesnāt exist as long as no one is submitting to it.
Well there is quite some media coverage of pssd pfs - also recent reports on German TV - but this somehow doesnāt necessarily lead to bigger awareness. How many more newspaper articles/tv reports are needed so that scientists may focus on a niche problem? Donāt wanna sound defeatist.
There are a lot of reasons to believe that there is a critical mass of public awareness that would turn tides in our favor. There might already be decent public awareness in Germany but I donāt think there is in other countries and the critical mass would need to be pretty international.
Good, well I hope this means you will be helping me reach out to get people to join the project.
I have limited time and canāt commit to leadership role but certainly willing to do what I can. I think what we need most is a leader.
No offence intended to anyone, but anyone reading this who has an idea about what the right thing to do might be, can you please consider whatās possible with the resources we have and how much work needs to be done and who can do it.
The most likely outcome of every idea here is that nothing happens unless the moderators or admins run it. This is because almost every time someone posts an idea it comes with the caveat that the person posting it doesnāt have time to do it themselves or the skills.
Please think about what you can and are willing to do, rather than what you hope someone else can and will do.
Iāll say again that I mean no offence to you @vkg1.
Young leaders are out making money. It would be more realistic to find a retired leader who wants to do charity work.
I donāt care about offense. Donāt worry about that. What I care about is results. Not everyone here is capable of being a community organzer. We are discussing ideas for getting improved results here. I know you arenāt satisfied with the current situation of people committing suicide, no one getting better, no one submitting videos to project, survey submissions paltry.
I provided 2 specific suggestions for better results above. I would be really interested in know what you think of those.
I wonder if anyone here knows someone who might be in that category. Maybe we could solicit members for such a person. For example, there was a US congressman whose son committed suicide because of Accutane many years ago. Maybe there are others with similar leadership experience who know people here now and care about them, would like to see them get better, have the bandwidth to help us.
completely agree. I personally think at this point we should be crowdfunding for individual treatments based off robust hypotheses. I remember some guy like a month back trying to gather people so he could go to china and get CRISPR treatment. Obviously I think this should be reserved for those who are at risk for suicide. I believe something like CRISPR treatments would be the best way for us to proceed until the admins and the PFS foundation figure out whats going on.
Iāve also said personally before Iād be willing to fund such an experiment
And CRISPR what?
Iām sorry but that is simply not a viable idea because we donāt know what to CRISPR. There are literally so many genes in our genome and as of now, we have no idea which one/ones is/are causing this. A quick google search should show you this isnāt viable because from my search, thereās at least 20,000 genes per person. Even if it was just a single gene causing all of these problems, itās pretty obvious that it is so unlikely to yield anything we might as well consider the success rate of it zero. Iām not saying itās impossible itāll work, but wellā¦
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Borax what did you think of my two ideas that would be relatively easy (though I recognize still a good amount of work) to implement now?