@Knifli, that is a really good idea. I was going to mention the survey briefly at the beginning of the next video I do - it’s already linked in the description - but a whole video talking about all the different things victims can do to fight back would be really worthwhile, I think.
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ill make an account soon and reach out to the mods to see if they are able to assist and if not, then why
if they make a big announcement it would work more imo because they have the position of authority in these groups
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I feel the PAS sufferers have to see an immediate benefit attributable to completing the survey. If it seems to be too disconnected to an actionable eventuality they may just not bother. I feel this could be communicated better rather than simply saying, ‘Do the damned survey…because…’.
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It’s better that we convince people of the benefits, for sure.
The benefits are real:
- Identify the heavy overlap between Accutane, Propecia and SSRI side-effects.
- This makes our problem 1,000x bigger.
- We will then get real attention. Think governments, media, regulators.
There is a strategy at work here and we are attacking this condition with everything we’ve got. I want my hardons back. You want your hardons back. I want that feeling when I cross a busy street and the girl in the short-skirt walks by and you get the beautiful moment of sexual frisson. I want to feel that burning beautiful lust again.
But we need Accutaners to help us. We need you. You can take easy, small steps to fix your situation today. Start by clicking here:
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Imagine if we one day would have 1000 responses, how powerful that would be. In any case, it would be much more convincing for scientists, health professionals, politicians, journalists and policy makers than a forum with 1 million posts. The problem with all forums is that information gets drowned by the data (posts). If people want to support the change that such visibility could bring, all they need to do is invest a moment of their time.
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That’s the thing. The benefits are immediate in the sense that every data point adds to defining these conditions.
Submit survey -> wait a day -> and we are still at the point where a small difference in the results can be seen from one person’s submission.
From those who have already participated, we see that it is unlikely there are several post-drug conditions, but one condition that varies in breadth and severity within each patient community. We shouldn’t even have different patient communites, but one large patient community.
An added benefit of this is that the small number of 23andMe files that have been submitted can more confidently be pooled together for the GWAS that will begin very soon. So, please keep them coming!
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Out of curiosity, how many have been submitted? Maybe we can also create a tally and goal for those too.
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seems like PAS is less common than PFS. It’s just statistics… there is much more balding men, than people with severe acne for whom accutane is the last resort. Probably thats the reason we don’t see so many PAS in here…
anyone posted about a survey on acne.org and pasforum.info (although it seems dead ) ?
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And then finasteride is also used for prostate (BPH). Though you assessment might be correct, On the plus side though, Isotretinoin is also used a lot by woman thereby increasing the potential user base again. A long while back I did some market research to try to determine the market size of 5ARi class substances (see table below). If you can find the equivalent Isotretinoin figures, you could compare.
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It appears to be around $1.3 billion
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Thanks. So it seems that the isotretinoin market is in the same ballpark as finasteride, assuming that finasteride generics have about the same sales as the original. In other words, PAS and PFS should roughly be on par. Therefore, it is not the market size but rather other reasons as to why we are not seeing as many PAS sufferers.
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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 group 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 ,
thank you.
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Hi,
Could you reach out to the members of your facebook group and ask them to fill out the survey here? It would be of great help to both our communities.
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Hello Stéphane and welcome… I was impacted by Finasteride but the lawyer you must be hiring for your case must be the same as the one people use for the Finasteride trial…
Bon courage !
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French people are shy :).
Haha hasn’t been my experience
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More French people suck at languages I guess :).
Read your story @borax and I hope you are dealing as best as you can with this shit.
Wishing you the best mate.
Last time I was in Paris if I couldn’t make my (terrible) french work, the person I was talking to would always start speaking English.
Do you think a French language translation would make a big different to how many people would take the survey?
Our French folder is barely used, which leads me to wonder if getting the survey in front of people is still our biggest concern, not the language spoken.
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It is wonderful to know you have a recourse. Lots of luck! It will have positive repurcussions throughout the world.
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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.
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