In this article, Traish in a way replies to the scientific article from a bunch of dermatologists (I call this one the Hit Piece) that says that we PFS-ers are all delusional. Of course the dermatology industry wants to say the problem is us and that their beloved drugs are fine! smh.
The author…could be a pfs sufferer?
Just came to post this as I received an email from Prof Traish this evening, however I see not much gets past @tzinkman! Thank you for the extracts @Tzinkman - i’ll look forward to reading it in full tomorrow.
I’ll be sure to express our gratitude for his continued support and fearless publications as to the urgent reality of this disease. So many reviews are indifferent, toothless, or mischaracterise the situation. As with our collective efforts, I believe the truth will ultimately cast a far more flattering light upon his work than it will the outrageous slander of the clinicians he alludes to who in some cases are essentially gaslighting vulnerable patients.
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This was really refreshing. Finally a researcher willing to stand up and say it’s time to recognize PFS. A lot of the other articles have understandably been more restrained but he’s calling bullshit on the other arrogant doctors who don’t know what they’re talking about. He seemed to allude to the fraud in the original clinical trials by calling them “biased” and riddled with “conflicts of interest”. Hopefully people with be more forthcoming and call a spade a spade - Merck actually rigged the clinical trials and how they reported the data, much like they did with Vioxx. There is clear proof of this now.
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Now this is great document to show to your useless family doctor when you request a specialist.
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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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