Thanks. Letās see how much traffic this brings.
Hi, you should ask the admin of the group if he will pin your post! Otherwise it will get lost iām afraid.
facebook sounds like the place to find different groups to pull in for surveys. im willing to bet groups for anhedonia and other symptoms have many users that tried PSSD and Acutane.
also jfc that acutane group has 7k people!!! its worth considering using some professional copywriting for the link and message to generate the most traffic imoā¦ @Dubya_B
thats an SSRI group (searched SSRI after finding nothing from PSSD) if someone wants to contact mods and get them to work with us in getting these surveys done + create a laser focused community
anhedonia group. many of them took SSRIās
@Dubya_B @Knifli have you guys reached out to the mods of those groups?
if not i dont mind reaching out (with a throwaway account ill make)
I did but they havenāt respondā¦ guys please join the both facebook groups and bump my posts!
@Luckydevil you should make a video about the survey 
I think it is a great idea to make a video with information what people can do if they suffer from long lasting side effects (filling in the survey, reporting their side effects, etcā¦)
Yes, we have. Like they say, you can lead a horse to water, but you canāt make them drink. Iām not sure if post-Accutane patients feel completely hopeless/helpless in comparison to the PFS and PFS patient communities, or what the problem is. Iāve even reached out to personal contacts among the PAS community via text, email, and PM and the majority of them have yet to step up.
We all know weāre making a desperate attempt at finding a solution to this condition, but remaining silent and fading away is a guaranteed life sentence.
@Knifli ,- @Luckydevil , myself, and possibly another PAS patient, have been discussing making a video this weekend or next. A good suggestion to emphasize actionable opportunities. Also, thanks for the help. Itās appreciated.
@Knifli, that is a really good idea. I was going to mention the survey briefly at the beginning of the next video I do - itās 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.
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
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, āDo the damned surveyā¦becauseā¦ā.
Itās 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 weāve 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:
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.
Thatās 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 personās 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 shouldnāt 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!
Out of curiosity, how many have been submitted? Maybe we can also create a tally and goal for those too.
seems like PAS is less common than PFS. Itās just statisticsā¦ there is much more balding men, than people with severe acne for whom accutane is the last resort. Probably thats the reason we donāt see so many PAS in hereā¦
anyone posted about a survey on acne.org and pasforum.info (although it seems dead ) ?
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.
It appears to be around $1.3 billion