Iam so sorry, I have had this survey for so long but I am so dysfunctional now and I have forgotten so many things that a normal person should be feeling that when I opened the list of symptoms that I first wrote down when I developed this, it broke my heart that I had even forgotten that I am not experiencing so many things. I just closed the survey.
I will definitely get it done, sorry to all you mods who are making so many efforts.
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PAS when you donāt finish the survey it saves your place so you can just work away at it a little at a time. Itās definitely long and somewhat exhausting but filling it out is probably the best thing in the world we can do for ourselves so I hope you will keep trying to work away at it.
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Just in case anyone is worried about this:
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there is a button at the end of the survey you can press so that your survey will not be associated with your username
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your username can be changed by me or another mod/admin.
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your email address can be changed by you.
All of this means you can tie your account to an email address which you only use for here, you can have a username that is not connected to your actual name or social media accounts, your survey is not tied to either your email OR your username.
Your privacy is safe.
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We are not asking of any personally identifiable information (PI) in the survey and even explicitly ask users not to provide any. We also have a main point in our Terms of Service which clearly states that users should never disclose PI on this site, be it publicly nor in pm. If users follow these rules, there cannot be any breach of confidentiality because there is nothing to breach. Also, we will not publish attributes such as age/weight/height/country at the response level, because those could potentially be of help to identify someone, in case there has been a certain level of disclosure by the user. The only thing people must be careful of, is to not use email addresses which contain your name on this site. We also warn about this in our TOS. In case our servers would get hacked, which is unlikely, an email address with identifiable information in it could become problematic. Please note that users can change their email addresses in their profile at any time. If you do so, please send me a pm because we need to change the email address in our survey database manually at this time.
In any case, thanks for participating.
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Thereās really no excuse for failing to complete the survey.
For some reason, the PAS community at large is full of excuses for not helping themselves or the victims who come after them and the degree hope-mongering because āsomeā PAS patients purportedly recovered with herbs (or whatever) in Accutaneās 30+ year history is unbelievable.
There are 2 small things that each sufferer can do that are totally free and involve less effort than most devote to posting on forums.
Those are:
- Reporting side effects directly to regulatory agencies
- Completing the validated surveys within the larger symptom survey available on this site.
The survey is not only meant to satisfy curiosity about these conditions, but has been designed in such a way that the data can be compared to what has been reported in medical literature in the past regarding sexual, psychological, and physical symptoms we commonly experience. This was done with the intention of approaching scientists in mind.
Thereās a PAS parents group in the UK who are constantly fighting on your behalf to prevent Accutane from destroying more lives and to help those for whom it is too late and you do nothing.
Side effects from Accutane might as well no longer exist in the US because PAS patients in the US do nothing.
All talk.
What is most concerning is that, as a group, we value the quality of our lives so little as to allow the current state of affairs. Weāve allowed pharmaceutical companies, doctors, and regulatory bodies to reduce us to whimpering, beaten, dogs who roll over without the slightest retaliation on our own behalves.
For those of you who have taken some proactive steps toward helping yourselves and others beyond participating in the fad treatment of the month club, I sincerely apologize that it has come to this.
You can only do so much with so few people.
Iām afraid if we canāt be more productive as a group than we have been in the past, weāre all doomed and we will have many more joining us.
@anon90613791 , thanks! Please encourage any other PAS patient you may speak with to participate.
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Iām here.
Previously followed this thread for years:
https://www.acne.org/forums/topic/295030-repairing-the-long-term-damage-from-accutane/
along with Dubya_B if Iām not mistaken.
Iāve taken the survey here and reported to RXisk.
Took Amnesteem approx 15 years ago. Havenāt felt the same since. Took a while for me to link symptoms with the drug.
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Thanks.
Yeah, that thread is a very sad place.
What was your name there?
Remember the 4-5 people who appeared and posted, ādonāt worry guys, Iām here to save the day and cure us allā?
Remember all the people who said they would do whatever it takes to make Roche pay the price for the injustice inflicted upon them?
Remember the ones who said they wouldnāt bother reporting side effects because it wouldnāt make a difference and went on to talk about how they would be cured by shoving coffee up their asses or swapping fecal material with someone healthy?
The guy who said he was okay with giving a fraudulent doctor his money for surmising problems with major organs by pushing down on his arm; because the doctor seemed like he knew what he was talking about and could probably heal him?
Where are they now, I wonder?
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Awesome! 3 additional PAS patients have completed the survey. Thank you all.
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Thought the same when I looked at the numbers the other day, I felt a little demoralised after seeing so few survey participants, but looking back today many more have jumped on board which is great to see 
finasteride went from like 51-77 and antidepressants have gone up a fair amount too, now accutane is getting there slow and steady.
Whoever had the idea to put the survey statistics front page everytime you visit, great job on that, its like a little race
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Same name over in that thread Dubya, and yeah my major problem with that thread was it was new bullshit everyday. People would forget as soon as a new page hit and post the same things that were discussed 15 pages prior. This is definitely a superior format.
Also, the survey, while great, I feel could be a bit more concise. I feel like more people would actually do it if it didnāt take so long and the questions were narrowed down a bit.
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Yeah. Weird things that lift our spirits huh? 
You can thank axolotl for implementing it. I canāt remember who had the initial idea for the survey banner.
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Hmm. Sorry, I must have been taking a vacation from that insanity around the time you were posting there.
Agree that the survey is long and arduous, and that many of the questions in the validated questionnaires feel unnecessary; but shortening it any further would be too much of a sacrifice. There were months of deliberation by the admins and mods leading to the finished product, so nothing about it wasnāt thoroughly scrutinized.
Many of the questions must be included for the sake of having full versions of the validated questionnaires/scales completed by patients when we begin going around soliciting the scientific and medical communities to take notice of this condition.
Already, it is bearing fruit because we can finally say there is indeed a very strong overlap in PFS/PAS/PSSD, indicative of a single condition.
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I have completed my survey, although the counter hasnāt increased. Does it check the number of complete surveys periodically or immediately? (its still 15, supposed to be 16 after my completion.)
The counter updates periodically, once a day I think.
Thank you for participating! As you can see we really need more PAS sufferers to participate. If you know any other PAS sufferers, please ask them to do the survey, too.
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We need to share the survey on Acne.org all of the PAS cases are there. But probably, Dubya shared it already there.
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h** and pasforum.info are 2 forums where I know PAS victims come to. Although I think I saw buddya there
Hi PAS, many thanks for taking the survey. The data is processed automatically every day at 4am GMT. Your survey will show up in the counter then.
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https://www.facebook.com/groups/214733665588935/
2 accutane side effect groups, maybe we can find more people here?
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Hey! Thanks!
I keep hearing about this group but have never joined. I didnāt even have a link or really have much of an idea how facebook works tbh, but this is an avenue we need to persue.
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Hmm. I was a member and didnāt even remember joining.
Have posted a link to the survey there. Thanks @Knifli .
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