Roaccutane studies, french action group

General Discussion
#1

Hello, we are a french group of victims of isotretinoin : https://www.facebook.com/groups/1736745353300361/ , we want a class action in France ( called “action groupe santé”), APESAC association win since few month in France for first time against dépakine in french class action. We are in contact with an association of medical accidents . You can see here an abstract of scientific study about this problematic : https://www.cjoint.com/doc/19_07/IGwb5HsA4LF_StateOfTheKnowledgeAboutIsotretinoinAbstract.pdf, and follow 280 pages of studies, with summary with hypertext links page 4 : https://www.cjoint.com/doc/18_08/HHDvuUoSvXb_-ScientificStudiesOnIsotretinoinCompleted.pdf ,
French abstract : le résumé en français en PDF
https://www.cjoint.com/doc/18_08/HHviDebLU2b_HGyxgkr8vij-résuméétatsdesconnaissancessurlisotretinoine.pdf

thank you.

9 Likes
#2

Dear Stephane,

Welcome to our forum.

I am not sure if you know this already. We at Propeciahelp think that persistent side effects from Finasteride (Propecia, Proscar, and generics), certain anti-depressants (e.g. selective serotonin reuptake inhibitors like Prozac), Isotretinoin (Accutane, Roacctunate, etc.) and other drugs are probably caused my the same mechanism. To gather more information about our sympoms and to present the similarity in symptoms in the various patient groups in a systematic manner, the admins of this forum have created a comprehensive survey with scientifically validated questionnaires.

The results of the survey will be presented to scientists together with a very detailed literature review that will explain (to the extend possible given what science has and has not yet discovered) why this is happening to us and why we are probably all suffering from the same condition despite taking different drugs. I think we cannot overstate the importance this has. Instead of various smallish patient groups, we would one bigger group with a significant problem. We could thus generate much more attention and in turn more financial resources and buyin from the scientific community.

To make all this more powerful, we need data. Lots of it! Unfortunately, participation from the Isotretinoin patient group hasb been low so far. May we kindly ask you to promote participation in the survey in your Facebook group. This would be extremely helpful.

Thank you and good luck!

7 Likes
#3

yes of course, if you want to write the message i have to post, shortly, and i post it with pleasure!

#4

Dear Stephane,

my French is not good enough to translate my post into French. But feel free to use or adapt my post above.

#5

It’s done :slight_smile:

they are here :
https://www.facebook.com/groups/1736745353300361/permalink/2053125848328975/

https://www.facebook.com/groups/1736745353300361/permalink/2053125848328975/

and

https://www.facebook.com/groups/AccutaneSurvivors/permalink/3119235148117036/

@ Northern_Star , @ lakehouse @ Greek @pete @ frenchfries

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 :

https://www.facebook.com/groups/AccutaneSurvivors/permalink/3113066222067262/

https://www.facebook.com/groups/214733665588935/permalink/794806940914935/

we have to profit of the number of volunteers of your community :wink:

thanks a lot!

#6

The links don’t seem to work because they are for content in closed groups.

1 Like
#7

Yes Sibelio, indeed, we have to register, but it s a goog way to touch your target, because there are 2000 and 7000 persons on the two english groups. We have not nothing without nothing.