No personal attack. The priority on home remedies and broscience predates you. But I do think we would get more survey respondents if we made its pursuit a more overt focus of the site.
the current approach we are doing is different from what we’ve done to have the track record
so no, it doesnt prove anything
The current approach is well in its infancy though. It hasn’t been going on for a decade or more. It needs time/more effort from the community
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@vkg1 If you have any ideas to increase survey participation, in detail, please feel free to share them.
And please also consider participating in the implementation of your suggestions.
Where’s the focus on getting survey respondents and public outreach to inform public on situation with these drugs? The overwhelming majority of posts on here regard people trying the same old things that have never worked. Same as last 10 years. The survey has been out how long now and how many participants? We need thousands of participants.
I am talking about the majority of effort on this board being toward getting survey participants and public outreach.
I agree with you. I am trying to get people onboard here.
What I am ALSO saying is, while getting people here, we also need a research team or even a single doctor here who is interested in helping us. Because we don’t know when the correct path will give fruit.
Thats what I have been saying since the start
I said this on 25 Feb. I have always been saying the survey is paramount. We all also know that there isn’t something concrete that could help us YET.
Edit: Guys also please go onto the forums I shared above and spread the word about the survey. If people see the survey being talked about in 2 places I am sure they will be interested. Just go and copy paste Greeks word. I ll also do the same.
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Well there’s a small group of us on this forum trying to reach out to people of various accutane FB groups, but yes we need more help in that regard. In terms of public outreach, the YouTube project is open to everyone. I’m recording my entry next week, to add to the sole entry we already have. People who are desperate for a cure might want to consider submitting an entry themselves.
I want to but can’t because of public career.
Could we crowdsource financial support for some accomplished investigative documentarian to make a film about us? If we had a film project with some person people could look up and see is accomplished, we might have something we could rally people for then I think a groundswell of people might rise to the occasion. We could fan out to fb, acne.org, pssdforum, sexual dysfunction forums, anhedonia forums etc and just get say 10 people to participate in a documentary. If it included all different kinds of people, especially once’s that people have extra sympathy for such as young women whose sex lives and therefore love lives and prospects for family were ruined before they had ever had a chance to experience them, then ai think the tragedy could start to hit home. Once that happened then scientists would be socially motivated to take on our cause. Then the people in the scientists’ lives would admire them for the relatively tangible or obvious life changing value of the work they were doing etc (I.e., social reward). Don’t underestimate the influence that pop culture and/or public recognition has on directing what topics scientists like to pursue.
This popping herbs and rediscovering that bodybuilders have said they got horny when they take Masteron or whatever have you over and over for 10 years has got to stop dominating things here.
There needs to be a clear and concise explanation of why the survey is valuable featured prominently within forum such that people learn that more readily than they learn about more pills to pop. If the average forum member here had a CLEAR understanding of that then I think they would be more inclined to share it with others and spread the word. I think the majority of people here do not actually have a clear concept of why the survey is valuable or why there is good reason to believe PFS, PAS, and PSSD May have common underpinnings.
Maybe there could be badges for referrals with some kind of referral system. These are just cursory preliminary thoughts on a busy Saturday. I will think more but everyone should be.
I did that some before about a year ago but have stopped using fb. Is that where all the Accutane users are now?
I think a documentary is a good idea, but if we get someone with a brand with a large base to make it
It would make our efforts multiply in terms of awareness
We would have to go after documentary makers that are independent and make videos exposing corruption or something.
That’s just in the awareness part.
If we make videos ourselves then we have to be work hard and growth hack them to make them go viral, or else it would be a futile attempt
We have to strategize for highest leverage in each direction at this point
Aren’t their advertising agencies with reasonable prices that can first create a professional video and second assist in getting the video viral in social media.
Sounds pretty costly though but I suppose that might be a pretty effective way. The campaign could also be linked with a gofund me page for research and a Change.org petition which people that watched the video etc can sign in order to show support for our case and make a stronger case in front of government / research etc.
If we get 300-500 members to donate 100-200 dollar each we would have a quite decent budget of 50.000 usd which we could invest in hiring an agency that can help us to create valuable content and to promote it on social media.
The video itself may introduce for instance 3 pfs 3 pssd 2 pas and 2 other substances affected. I suppose it should be minimum 6 people but not more than 10.
If we could further get 2 renown professors (as for Germany and the Netherlands I can think of 3-4 that may lend their credibility to support our project) that confirm our case in the video this would be even more effective.
Just my 2 cents
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Is there anyone in film here that knows how the film industry works and knows how to get the most exposure possible? The idea is to both draw attention from decision makers on what gets picked up by mass media and also by just as many eyeballs as possible generally in order to let people who have taken these drugs (and not known that they might be the source of symptoms they have been living with) know about a possible connection. We would need equal representation of both male and female sufferers and it might be somewhat preferable to have a female filmmaker. I suppose there are both digital and traditional ecosystems for documentary film delivery. It may be the case that one or the other tends to be taken more seriously or get more overall engagement. It’s not my world so ai don’t know. We would also want doctors such as Goldstein and Healy to be involved, since they have experience with many patients, the credibility of medical degrees, and eloquence of communication on medical topics.
If the forum administrators would support it then perhaps we could have something like gold silver bronze levels of financial contribution that members here would receive badges for. Yes maybe a preview could be viralized on social media and a full film distributed in traditional manner. That way both the situation could be conveyed both widely and deeply.
The mere fact we actually did something like getting a documentary made would lend credibility to our cause in the sense of that it would convey seriousness and dedication to making life better despite tragic obstacle. Our current status is the same as that of any other other group of nut jobs on internet who believe in conspiracy by evil corporations but have no evidence e to back it up. A real documentary showing real people who are otherwise normal would separate us from the herd.
Many of them are in various Facebook groups. We had a handful of participants from FB last year and it is probably time to give it another shot. …There is definitely a wide audience on FB, but they are scattered.
Another avenue might be CFS forums or groups. There are many there who say their fatigue and pain began with one of our featured drugs and quite a few with sexual dysfunction in addition to classic CFS symptoms.
2 ideas:
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Search out for sufferers that may be military, and try to fund a government research into the situation with the huge budget.
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There’s a team of people in the U.S. that have dedicated jobs of solving difficult medical issues, such as rare diseases. I’ll search for it.
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Hey guys,
Let me just start off by saying I agree with all of you.
You have all mentioned pushing for mainstream media coverage and social media coverage. Unfortunately everyone has the same idea and mentality “lets all do this, just not me”
Unless you are all stepping forward right now to be the ones to pioneer the change that we need to support our scientific efforts then please just stop suggesting it.
I’m not trying to be rude but I’ve been posting and DMing individuals for weeks now trying to get people on board. No documentary will be made without people who are suffering from the disease to feature on it. Everyone has a pretty similar excuse about having a career that would somehow be majorly jeopardised. No one will be fired from a small part in a video that will talk about a disease they suffer from. Sorry I’m not buying any of it anymore. Not saying everyones excuse is completely bogus but everyone is hiding behind excuses right now and I’m finding it hard to get my head around.
I can’t imagine anyone would care announcing they had something like cancer publicly, if it was necessary to help their cause. It’s terrifying to think people would rather be severely damaged forever than to let anyone know what’s going on. We have everything but this one thing that is necessary to push science over the line. The scientists are there, the technology is there, the foundation is there to connect to the scientists. So whats wrong? People need to care, scientists need to want it.
It doesn’t matter the strategy, we will always have this same short coming. You will be fighting an uphill battle trying to get the attention of people that matter. Recognition and lack of marketing are our problem and the reason things are going slow.
If anyone is interested in taking this social media and youtube project seriously then message me. We all have to be responsible for our own future and the change we want to make. If we want to get better we all have to be the ones to do it because there are not many of us at all. It might just take one professional video going viral and we can’t even get enough people together to achieve this.
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Your points are all legit. Still I doubt a self made video of people filming themselves with their smartphones/small cameras at home which is then „somehow“ posted on social media hoping it may go viral would yield sustainable results.
Or are there aspects of the idea/project that I have missed so far? I admit I haven’t followed the idea very closely in the past.
If the path of a YouTube video is chosen I’d think an agency could deliver the best outcome as for creating a short film as well as the social media strategy. I do not think that just using twitter hashtags and sharing it privately on Facebook would be enough but maybe someone knows better. Granted it’s a great first step though.
Besides, I think the forum leaderships idea of a short film is an excellent one. Still I don’t see it as a guarantee to ultimately attract scientists interest as you seem to suggest. It sounds as if we’d get all the funding and interest of scientists/target groups. As in marketing and product development this is obviously often not the case. Chances are sure better if advertising professionals create content and strategy.
Or do we have professional film makers/marketing guys that volunteer? Sorry if I missed some information on that.
Would it make sense to have 2 polls, 1 being about financing/professional/non professional and another about people who are definitely ready to participate in the video? Those who don’t participate may do other useful things as for example suggested by admins and mods.
For now I’m repeatedly reaching out to pssd communities politely and briefly explaining the survey. Still you can’t force it upon everyone, some apparently don’t care as much and if they get reminded many times some unfortunately seem to care even less so.
Im not trying to suggest I knew anything better or that I‘d be contributing a lot. Just sharing my thoughts and questions.
If we absolutely do not find at least 4-6 people that participate in a video then this is the reality we have to face and other marketing strategies maybe would need to be explored. Again I think an ad agency would know best if we don’t have the profound knowledge but this implies of course consequent funding.
We are all just brainstorming right now. This isn’t kickoff just yet, it’s just saw weekend initial thoughts for now. We should be evaluating several ideas on different approaches. It is absolutely clear that the approach of last 10 years will not yield any of us a positive outcome.
So far what he have is very encouraging. Several of you are having great ideas so quickly. I think something more promising might change peoples’ ideas on getting involved. For example, while I am not willing to risk career for Youtube video that might not come out well anyway or make much impact, if we had a professionally edited documentary that got tone, information, full diversity of people involved, etc and just generally was much more convincing than any amateur YouTube clip could be, then I would absolutely be willing to do it. My impression with initial YouTube videos was that they were just kind of sad and unfocused. If rather we could make something rich, convincing, inspirational then I think that would be a different story. That’s what good documentary makers can do. It’s an art form of course. Not trying to say there is some One thing or way to do things. Just brainstorming right now. But very determined that we absolutely have to do SOMETHING major.
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Sounds great on the 2 professors you know. That would really be great. Imagine having multiple highly regarded professors and doctors from around the world. That would be tremendous. I wonder if there is anyone here who knows anyone in say, Japan, as well.