Post-Drug Syndrome Survey FAQ. Survey NOW LIVE - Please Participate

I am pleased to announce that we have now reached our first milestone for participation from the PSSD side (50 participants) and are on a good way to reach the second milestone for PFS (150 participants). A huge thank you to all participants and all the people who are bumping threads, spreading the word and reminding people to take the Survey! Well done!

Obviously, this does not mean that we are done on this front. I hope this progress will motivate even more people to participate and to spread the word. We need as much data as we can get from the PSSD, PFS and most importantly the PAS community (as it is far behind). The more people participate, the more powerful the data! Data based on validated questionnaires from hundreds and hundreds of people cannot be easily ignored. So make your voice heard and participate! Every single one of us can make a difference here with relatively little effort.


Incredible work guys. This data set is already highly significant and will only become more powerful with more submissions. Thank you to all who have participated and encouraged others to do so.


Thanks to the mods who came up with this idea and took action to ensure participation.

It doesn’t take a genius to poke holes in ideas all day long and mock people for trying something, and unfortunately there’s too much of that.

luckily we have a group of folks that will ignore the rampant toxicity and push forward day by day.


Could the data be shared with users ? Sorry if I waste your time. I tried to find out a thread or option to pull excel file with data but did not find.

I would be very curious to analyze current outcome.

Thank you.

@axolotl im curious

is there a rough time estimate when you will be completing the research paper?

The data will be shared with users via interactive tables in the survey results subforums as and when the back end code and analysis is completed. Keep in mind this is seriously unprecedented - not only in terms of this being unfunded and voluntary work, but in terms of pushing the tech to the limit. My work was the front end of this project if you will, while @awor has to take care of the back end. Given his available time, it’s likely this will really start rolling out towards winter.



Looking forward to it Santa! :slight_smile:

btw, can anyone post a weekly list of people that need to fill out the survey? I dont mind PM’ing them on a weekly basis to fill out the survey. @Greek

additionally, @axolotl this next suggestion is just something I want to make sure you are aware of.

I understand that we have a human resource problem here when it comes to certain projects, but i must ask, have you looked into these different apps that might easily create functions that we need for this sight?

for example, i mentioned the “popups” idea earlier to convert more surveys on a daily basis. You stated that we do not have enough people that can help with your work.

so if you take a look at an app like this

It would be fairly easy to implement something that would take hours and hours to create.

likewise, i think it would be worthwhile to look into some of these apps that are fairly cheap, and even completely free for basic features for other projects that you are working on.


I don’t have access to a list like that, but if you see someone without a tick on their avatar, give them a nudge!

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Some info about survey results is currently available in the Survey Basics category.

The reports need to be viewed with a desktop browser to appear correctly.

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When the forum shows ‘Views’ against a post, is that unique views, or total views?

If it’s unique, I am baffled as to why there’s 9k views but only 300-odd people have completed the survey! It took me less than 45 mins from memory.

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I just registered to this forum to be able to participate in the survey. How do I receive an invite? Thanks.


Hi frustratedbean,

Great to see another PSSD person signing up to take the survey. A warm welcome to our forum!

You should receive an automatic invite within the next 24 hours. You may also try the bar icon on the top right side of this forum (on a desktop computer). Please let us know if you encounter any issues.

In the meantime, please consider to post a member forum and check out this thread:

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Hello, I would like to complete the survey too please :slight_smile:


Dear Sam,

Welcome to our forum! It’s great that you want to take the survey. It was a lot of hard work to create the survey. It is based on scientifically validated questionnaires that will create highly relevant data. The preliminary feedback from scientists that we are in contact with has been promising. What we need is more data, though, especially from people who took Accutane/Isotretinoin. So, if you know other people who took these drugs, please ask them to take the survey as well.

You should receive an invite to the survey within the next 24 hours. Alternatively, you can try the bar chart icon on the upper right side of the forum page (on a desktop computer).

If you encounter any problems, please let us know.

I hope you like the forum. Please consider posting your member story in the relevant category.

Thank you and enjoy your stay here!


Hey there! Trying to do the survey, can you please unlock it?

hey @Jazzmatazz, thanks for signing up. If you head to the member stories category and create a new topic telling us a little about your situation, you’ll soon receive an invite to participate :slight_smile:

Thanks and welcome


Shore; already done it :slight_smile:

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I’ve not been active for a long time on any forum, used to use quite a lot (isotretinoin related issues). Been invited to complete this survey, but being met with an error page. I believe this is due to my inactivity. Could a moderator sort this for me please?


Welcome back, Crank92, and thank you for wanting to participate in our Survey!

I’ve upped your user level, so you should soon be able to take the survey. If you encounter any additional problems, please let us know!

As you can tell from the counter on our page, we really need more people from the Isotretinoin community to take the survey. Please spread the word if you are in contact with fellow patients.

Thank you!


Welcome old buddy!

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