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



Thanks guys for the effort…
Is there any researcher linked to this survey?

Knifli introduction

We’re in contact with researchers who are aware of the project, but if you mean is it earmarked, no - we didn’t want to do that. We’re very happy to discuss potential publications arising from the data with professional scientists, but I expect that’s more likely to happen at the next stage. And, of course, to see the benefit we need as many patients to take it as possible. In terms of the project, our current focus is squarely on the analytics system, publicising it to the community and making sure everyone is getting their invites ok.

Thanks so much for taking it Lw77 and spreading the word to PSSD patients, highly appreciated :slight_smile:


More and more people are taking the survey - imagine this will be big!


Like the @ncsugrad above, I like how the survey picks up where it left, if you close your browser. Accidentally shut it at one point - the survey re-commenced right back where it was.


Hi axolotl, sorry to be a pain, but I haven’t received the survey, I’ve checked my junk folder, and cannot see anything. Please would it be possible to re-send.


Do you receive any forum mails? If you are a hotmail user you need to add the following emails to your contacts:


Mine was in my spam folder with the sender marked as “administrator”. It is possible people are not finding it in their spam folder because they do not recognize the sender. Not sure if it will be the same for others but maybe double check.

Thank you again so much.


Thanks Awor, I’ve now added the contacts to my hotmail account.


@axolotl I still haven’t received an invite for the survey


Have now sent a reminder email to both @Ukguy82 and @Ice. Please take a look in your emails and spam folders.


Sorry it’s still not come through, I also checked junk folder.


Same here, still nothing


Will follow up in pm with you both.


I still do not see it in my junk folder either.


Hi @trav, I have issued a reminder. If you have not received it in around 10 minutes or so, this may be due to unsubscribing from emails in the past. Please follow these instructions (from the first question of the FAQ):

Thank you


Can you and @Ice please try this:

add to approved senders


Okay thanks, i just re subscribed


Thanks @trav - Can you please check your emails now and let me know if you’ve received the reminder?


Update 26/02/19

Project progress

We are extremely pleased by the strong start of this important project. Over 50 users have either made progress towards or submitted their survey already! Thank you so much to everyone who has participated thus far.

Spread the word

If you would like to help move things along, please encourage fellow patients across the forum to participate who might not have visited this topic or noticed their invite email. If you are affected by a listed drug other than finasteride, please endeavour to make fellow patients in your respective community aware of their opportunity to register and participate. There is, as ever, power in numbers.

hotmail problems

We are having some trouble with delivery to hotmail addresses. Something on microsoft’s end must be preventing delivery in some instances. Normal reply notifications are being delivered to these addresses, so for some reason the content of the invite message must be triggering something. All mails go out via the same mail system.

As such, if you have not received the invite, please follow the steps in the first answer of the FAQ. If this doesn’t resolve the issue, you may be issued your unique invite via private message from an administrator.

Thank you and best



Hi - not got mine, hotmail user. Just added the contacts in. Thanks guys.