Couldn’t have said it better.
Hello, it would be great if you answer the following posts by providing precisions for example, so they go back in the flux, and every day would be the ideal. There are 2000 and 7000 members on the two english groups, so you can have a big visivility, but the condition is that the post stay on the top…it is already very far of the top…I have on my side spoken to the admins of the French group. I think they will approve and endorse this promo. I will do same thing with admin of Post Finasteride Syndrome french group
and
Thank you also for putting up the promo post on the group iso french.
we have to profit of the number of volunteers of your community.
Thanks to @Knifli , and future other helpers, i hope for you and us. Two new answers to your surwey, me and a women, so it work.
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I reup your post, i saw your message at the moment , because i don t have yet time to read all this topic, it would ve very goog that we were more than two because we risk to be bloqued by facebook and i need my account, it is moreover quite simple to reup 
thanks!
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From what I understand, we need to bump threads about our survey quite regularly in this Facebook Group, because otherwise they disappear from the front page. Is that correct, @stephane1 and @Knifli?
It would be good if other people with Facebook accounts could join this group as well to explain why it is so important that the Accutane patients join us and contribute to our Survey and 23andme project. The more more people support this cause, the more convincing it is for people on the fence.
The staff here have posted plenty of explanation. So feel free to use these texts.
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Correct!
We are trying our best to keep it on the front but it’s hard since we both live the +1 time zone. So please help us out guys!
It also might be a good idea to search for similar facebook groups in your native language.
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Yes @Northern_Star , that’s exactly it, we have to keep the post at the top of the page, and for that, without it looking suspicious, it’s better to ask questions, wait for the post back down, answer, and so on, as a Socratic dialogue lol.
The more we discuss this, the less weird. We just have to be content to talk like that on facebook, superficially, and succinctly. it is very easy, and not very time consuming.
Thanks
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Not only that, but from what i saw on this message board, the personal reminders work best. tagging people or sending folks a private message to remind and motivate them.
would speed things up significantly
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Yes i agree, but on facebook, most private messages sent to nonfriends
leave in the “messages filters” (spam) …
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so then we can just tag them on the facebook group in a post dedicated for reminders of the survey
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I have searched for people with PFS symptoms and commeted on their posts asking if they can make the survey, didn’t really worked out 
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Yes, I did the same thing on groups of auto-immune syndromes without known cause (fibromyalgia, chron, etc …) for bring people on the group roaccutane, for a month, from 5h to 10h per day, ca was a waste of time people end up reporting the account, and the account disappears with the post … a lot of work for not much, while dialogue at the bottom of a post c is easy and fast. Why admins don t create a facebook group , maybe?
It would not be dispersion but a multiplication of your windows of communication, in my opinion
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you have to convince them on a potential solution.
these people are frustrated that theres no professional help or solution.
ask them “do you want an exact medical solution to treat this problem?”
“if so, help us raise 7 figure sums of money for PFS. we already have some studies being published, and theres tools that can help solve this exact problem. we need to raise money to get more studies done to learn how to use these tools. help us by taking this survey”
etc
you have to lead them. ask them why and how they are frustrated. relate to them with your experience. tell them how you can help “7 figure sum funding for PFS solution”.
folks wont understand why a survey is going to help them right off the bat. you have to make them realize it. ask questions, then lead
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Yeah you’re right. We’ll have to focus more on the things you’ve mentioned. However its hard to convince those people since they don’t have the same insight in this condition as we have on this forum + english isn’t my native language. It is really difficult since the PAS community is way less organized as the PSSD and PFS community (PSSD also have an active forum), maybe because a lot of them got hit by this terrible condition when they were teens, idk!
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ill help out dont worry.
i dont expect things to work out at first, but its a matter of persistence. main thing is not to get too detailed and keep it brief.
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I agree,
for my part,
I know only very less your actions, and the size of your association, because i am a new menber, I am going to dig more deeper in the forum when I had time, I have a little discovered yesterday 23andme, too. ,
@knifli pointed out an important point, which i discussed yesterday with the president of the french association on the PAS (AVFIN), and the report is the following one, go to see on http://www.vigiaccess.org/(figures of OMS pharmacivigilance) declaration in word of finasteride: 15 776, isotretinoin: 62890, we can multiply by 100 to get the real numbers.
These figures have increased considerably in recent years (internet surely), and yet for the roacc, nothing unifying, unlike your site that is serious, and where we feel that there are people and can be money behind? I do not know how it was created, how much are you, and if you have money? But in short while for the iso, we are 4 times more, nothing …
I think it is an excellent idea to want to welcome them with iso, because for you it is an advantage, because we are very many, and for us it is missing a federatrice organization.
An other point wich maybe play is the fact that iso Is reimbursed in France by social security, unlike finasteride, I do not know if this is the case in other countries?
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Just my 5 cents. Forum allows anonymity. I wouldn’t like to participate in any FB group where my real account is visible to everyone, and especially when FB algorithms sometimes allows your FB friends to see your posts in the groups you joined. Bringing up this delicate problem on FB sounds bizarre to me.
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No appreciation for bravery?
You do not have to tell your life or go into details, the only thing to do is to live the post by commenting regularly. The solution is to create an express account;) it’s just to advertise and get the victims where they are, because visibility is the best on facebook
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You can create a second Facebook account with a pseudo.
The French PFS group is closed and I just created a second account with a pseudo.
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Thanks to motivated persons who want people on the survey ( i thinked that admins would be…) to re-up everydays ( better twice a day) in commenting posts aboves (many times that i repeat that and nobody…) :
survey :
https://www.facebook.com/groups/214733665588935/permalink/781350602260569/
https://www.facebook.com/groups/AccutaneSurvivors/permalink/3106478106059407/
pharmacovigilance :
https://www.facebook.com/groups/214733665588935/permalink/801103523618610/
https://www.facebook.com/groups/AccutaneSurvivors/permalink/3138348532872364/
roaccutane french group ( thanks!) :
https://www.facebook.com/groups/214733665588935/permalink/794806940914935/
https://www.facebook.com/groups/AccutaneSurvivors/permalink/3113066222067262/
more we comment on thoses post, more they will stay longer on top, and more people can see that.
please go create an account…no excuses.
It take 5 minutes the morning, and 5 minutes the evening…
thanks.
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