Yes, and it’ll be even harder for denying scientists to ignore once we have hundreds of survey results all showing the same experience. Please fill out the survey, @ll_amp_Prosper.
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Yeah while I perfectly understand the hardships that evolve from our conditions it’s super important that users that have been experiencing side effects after withdrawal for at least 3 months fill out the survey. If you’re fast it’s easily done in 40-50 minutes. Of course you can also split it, progress will be saved.
So @Tomas it‘d be a great support if you fill out the survey as we all want to stimulate progress.
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Hi axo
As there is an Endeavour in Germany in collaboration with university clinics and professors to focus on pssd and diagnostics and further studies I wonder if it’d be reasonable/possible to share our aggregated data and somehow enhance collaboration? Or do you think this is not necessary at the moment?
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hi @malfeitor,
At this stage, on the advice of scientists, we have to pursue statistical power as the urgent priority. Every single patient taking it is a great help, and patients shouldn’t simply rely on others to be doing so. Secondarily, it will take some time to effectively statistically analyse the results. This is being undertaken by @awor with professional guidance, and unfortunately is no easy task, requiring computer programming and statistical expertise. We are patients after all and to do things properly takes more time than is often appreciated or any of us would like.
However, scientists interested in our data are encouraged to contact us via the contact page on our site, so feel free to pass that along. Some preliminary and basic statistics are shared in the survey basics category which provides handy links to information in a basic form. This can be publicly viewed.
Thank you and best,
Axo
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Thanks for that update 
i hate to ask this but is there a minimum number the scientists are asking for before proceeding?
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It’s a more is more situation.
If we had a million surveys we’d have a much stronger case than if we have 50. There’s not a threshold at which point scientists will swing into action (as I’m sure you realise), we just need more data.
It’s anonymous!
It takes an hour!
Not taking the survey prolongs this!
Why are some people ignoring the repeated reminders?!
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@Wetaka
@iull1k
@bryce54
@anon58873600
@Escitaloshit
@Mr.Children
@Tomas
@CourtCase
@Sweetlou
@Helpisontheway
Please read these last few comments guys
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Well, there’s ideally and then there’s working with what we can get given the proportion of patients taking part. Ideally, 300 fin and 200 per non-fin group would be strong, but 100 per non-fin group would be decent.
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Can we come up with a strategy to mobilize the accutane groups?
Reaching out by posting in their groups hasn’t yielded much results…
I’d be happy to help and input
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I second that. I’ll help in way possible to help gain some more PAS patients.
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Thank you, we’d always appreciate help - perhaps best to liaise with @Dubya_B and @pete regarding efforts to let PAS patients know.
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“These constellations of symptoms constitute the basis for PFS in individuals predisposed to epigenetic susceptibility. ”
This statement says a lot. I have family history of depression and mental illness so obviously some genetic abnormality has been passed down from my parents. I’ve never been genetically tested. If I did what would I look for? It’s a needle in a haystack. What epigenetic change happened to my body from fin? Even if we found what had changed is it possible to change it back?
Glad to see people much smarter than me are trying to help us. I believe Traish is doing this work outside of the PFS foundation. I wonder if they coordinate at all. I have said this before but it would be nice if the PFS foundation would have a thread on this site where they could interact with us on what their current focus is on. That would help add direction to our discussions and motivate people to get more involved such as donating to the next research topic.
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Family history of depression and “mental illness” is not evidence for any genetic abnormality.
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Ok, not abnormalities but genetics non the less. Genes have been identified that are related to depression that makes a person more or less prone to depression.
The fact finasteride works is through gene expression…By lowering dht u are basically slowing gene expression by slowing or stopping balding genes…When u stop the med Gene’s then go back to functioning normally because you can’t change Gene’s but alter transcription activity…Apparently after stopping some Gene’s expression is altered and is not expressing as before finasteride…Or easiest way I understand it…
Some day I will explain why this is a) meaningless b) misleading and c) wrong.