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


Hi @razac, I presume you mean the form? That step is what lets our emails get through to you if you have unsubscribed. The reminder email then still needs to be manually triggered by an administrator when you let us know you’ve filled that form (as you have). This is because you were already sent an invite, which I can confirm, but did not arrive either due to the delivery problems hotmail is having with our emails or due to you unsubscribing from our emails in the past.

Did you also follow the step of adding the to your contacts?

I have now issued you a reminder email. Please let me know if you’ve received it.


hi, here to participate in questionnaire, I have pssd.

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Hey @anacleta, thank you - the system will now automatically send you a unique invite within the next six hours


What is the goal of this survey? I’m willing to help any way I can but if the goal is to present the data to researchers, doctors, ect. what is the benefit? I think most of us here have experienced giving doctors lucid, in depth descriptions and examples of our condition and have been met with skepticism at best. The 23 and me project seemed to be important because if you can pinpoint hard data to researchers it gives us a very strong case, but a survey that the medical community in large sees as a group of hypochondriacs describing what they perceive to be wrong with them seems similar to what we’ve all gone through in person.


Hi @Trav, telling a single doctor your symptoms and submitting to a standardised representative data set comprised of recognised scientific measures are not comparable. The aim of the survey, background and information on included validated measures are posted on the blog as well as discussed in the FAQ at the start of this thread.



I tried to see my survey but when I click the link I get the next message

" This invitation has already been used.

We are sorry but you are not allowed to enter this survey."

Does this means my survey is OK? I saw a thread a few days ago saying you had to do again a few parts of the survey.


Hi @Victorcillo, yes - this is the message that is displayed when you visit the link after submitting your survey. Before submission, the link can be used to return to the survey. We’ve received your response, thank you for taking it. We are currently having a considerable tech headache trying to map the original submissions to the new database structure since the necessary update recently I mentioned previously. Along with the time spent on the design, the technology under the hood of this is more complex than might be appreciated when taking it. All in all there’s about 2400 potential points of data from each survey. However, we are trying our best to ensure this data can be translated and currently this is our working aim. If not, we’ll notify everyone who submitted the survey before the update as necessary, but this will be a last resort.

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Hi axolotl.

I would like to participate in this survey, but I am not sure how.

Am I supposed to receive some kind of e-mail?


Hi @Capello,

You were sent an email containing a unique invitation on the 21/02. I have just issued a reminder email containing your invite - please check all your folders including spam. If you still do not see it, you may need to resubscribe to our emails if you opted out in the past for any reason. You can do this by following the steps described in the first FAQ answer, which is in the first post of this topic.

Thank you


I would like to receive the survey by e-mail


Hi @dendo89,

Please fill out a member story:

I think that will trigger the survey being sent to you.


I have gmail and have not received and email. It is also not in my junk mail.


hey @moonman1, could you please fill out the form in the first answer of the FAQ (original post of this topic) and let me know when you have? It may be because you have unsubscribed in the past from our emails. I will then have the system issue you a reminder with your unique link. Thanks


Just a thought… Would it be more practical to send these links to the survey via PM if they are not automatically generated by the triggers?

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Hi @Dubya_B,

Not without many hours of bespoke coding. To be clear, it is working perfectly and is both generating and sending the invitations. There is essentially a simple AI managing who has and hasn’t had one constantly. Invites are being sent correctly and are logged and dated. There’s sometimes simply delivery issues with Hotmail for unknown reasons on Microsoft’s side, or that people have previously unsubscribed and need to resubscribe via the form in the FAQ before they can receive emails from us again.

In the future we will additionally implement buttons directly in the forum that will take users to their unique survey invite and to their clinical test/therapeutic reactions survey. As ever, we do not have funding for this project and it is really punching above our weight. The development effort required is and has been enormous and, including the analytics platform, is essentially enterprise level software. Considering I’m so severely affected by PFS I have very few operable hours and awor has other commitments, we just have to do things one step at a time.


Hi guys -

Can I have the survey re-sent? Haven’t been active in a long time and probably deleted it on accident.

Also, if the 23andMe survey/data collection is legit, I have results from there as well.

Take care,



Hi @Former - thanks, yes you had not yet received one due to inactivity. You will be sent an email by the system in the next six hours. Let us know if you don’t get it.

Regarding the 23 and me project - please see the link below here for instructions on submission. Thank you very much.


Hi new user here, but not to the syndrome. Accutane user. Please send me a link.

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Thanks and welcome @Throwmeinthetrash - the system will send you a unique invite within the next six hours.


Just completed. Thanks