It is wonderful to know you have a recourse. Lots of luck! It will have positive repurcussions throughout the world.
As I already mentioned, French pfs sufferers tend to stick to a small Facebook group which is little busy.
People often lurk, occasional posting and this is it…
As far as I know there would be 300 memebers on this site.
I know some of them sometimes visit ph but don’t know why people just can’t be bothered to be part of it…
I can encourage them to come and participate but unfortunately can’t force them to anything.
As far as I understand, language should not be an issue since there is a translate feature on the forum…
The French forum is not very busy and I exchange with people on WhatsApp or messages.
Activism in France is cutting edge as The avfin association has helped to raise awareness on the devastating sides of finasteride…
Last spring just before I crashed, there was a big awareness campaign on tv, press, radio.
I can bridge the gap between what is going on in France and this forum as I am fluent in both languages.
would your group be interested in a potential multi-million dollar funding to tackle this problem with professional researchers and cutting edge technology?
our message board has a few options and solutions we are working on, and we need more participants in order to get the funding to create a solution for isotretinoin, SSRIS, and propecia victims.
Nous avons désespérément besoin de plus de participants au sondage pour notre étude. Nous sommes en train de réaliser une étude montrant le chevauchement des symptômes entre le Propecia, les antidépresseurs et l’isotrétinoïne. (Les effets secondaires de perte de libido sont si similaires chez tous les patients.). S’il vous plaît, pourriez-vous envoyer notre enquête à vos membres? Nous vous en serions extrêmement reconnaissants.
Je vous remercie.
Hi, it’s done on https://www.forumpsy.net/ wich is a very serious site against allopathie and psychiatrie… I will share your survey on the facebook group, with pleasure And sorry for my English, and yes i am very shy, but i was mostly disconected and overdosed of internet last days
Yes Greek , i think that a French ( and other more represented) language translation of Post-Drug Syndrome Survey FAQ. Survey NOW LIVE - Please Participate would make a big difference to how many people would take the survey, because french people are very bad in english, and also pretentious, and all the “clichés” , without joke, the fact that your site is multilanguage is very cool. On facebook ( i dont use facebook but i have to with accutane), the auto translation is a big advantage. I am building a site about isotretinoin, and it is a big big work to translate all…but i should show that in english also.
frenchfries I don’t know where is the translate feature on the forum…?? but google translate works very well since one or two years
edit : Ok it s the globe icône for translate
@ frenchfries , yes i am in touch with Sylviane of avfin, his group is similar with the roaccutane french group, we are less than 300. We want to do an alliance.
Concerning asso AVRG, they don t help us, not at all.
And i am so tired, and we are so desorganised, so we cannot create a new asso for the moment, but we 'll have to. I try to connect all similar groups, it s a big work on facebook, it’s discouraging, i create a site web also. I am not admin of the french group facebook about roaccutane.
@ lakehouse , i will share your survey on the roaccutane group. But people are very attentist.
Yeah we should join forces… The AVFIN is making a heck of a job and Sylviane is an amazing woman who dedicates more than she has to her cause. Have you tried to get in touch with David Healy? He is very well aware of the SSRI side effects. There is PFS French group and some people who suffered from SSRI. Have you joined it? Our symptoms are very similar and if we want recognition we need to see bigger than the molecules :).
Not for the moment, but i am 100% agree with the fact to connect internationaly.
Question, how can you have multi-million dollar funding ?
the fact that it is not a depression, but an organic syndrome change all the things.
frenchfries je peux lire mais je ne peux plus te répondre car j 'ai dépassé mon quota de messages pour 24h en tant que nouveau membre
frenchfries I can read but I can not answer you anymore because I have exceeded my message quota for 24h as a new member
So i write here while waiting :
I just PMed you feel free to chat! @stephane1
You guys could also use the French sub-forum. I understand that sometimes chatting via PM can be more “personal”, but in general sharing with the broader community is better.
You can make our forum your home
It’s all yours.
@anon90613791 , thanks but we don’t have yet a rescousse about roaccutane, Asso APESAC is changing the rules of class action and compensation in France about Dépakine, since last months, and so for other drugs. But more we’ ll send medical records to https://www.aaavam.eu/ , more we have chance to win.
I strongly suggest you to regularly comment these publications above, with diferent persons , spaced in time, where i talk about your survey on facebook in order to place the post on the top the more longer as possible, it is very important to have a visibility on the facebook flux ( where information disapear fastly on the flux).
Mostly comment when there is a lot of person ( end of afternoon) because there are other post who erase of the top, and also more visibility!
Thanks also to do same think and add comment on next messages for the same reason to help me to bring people on roaccutane french group and inform them, on these posts :
we have to profit of the number of volunteers of your community
thanks a lot!
Bonjour Stephane, Idk if you saw my comments re using facebook for discussing delicate personal/health issues:
Facebook is a horribly bad idea for dealing with groups like ours. If someone is in contact with these group admins, perhaps get them to reconsider their platform for the reasons I posted above.
In any case, merci beaucoup for your help in liaising between the french groups and this community.
Hello awor, and thank you for your thoughts and advice on social networks. I completely agree with you. However privacy does not really exist anymore, because your internet access provider records everything too. The advantage of facebook is the census of people with the same problematic, but we agree that this kind of flow is the enemy of good information because its quantity is inversely proportional to its quality, and everything is very quickly drowned in the mass. Moreover, it bothers me about this kind of forum where unregistered people can see all exchanges (some forums are private in part, this is a plus), have a good day, cheers