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

Welcome Emily and thank you for wanting to help us collecting important data!

Please post a member story here:

You will then receive your survey invite soon.

Thank you and good luck!

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@emilygrey She already has a blue tick! Wow! Thank you emily. We are here with you.


I’m just requesting access to the survey please.

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You’re going to have to fill out a member story by making a new post, selecting category as member story and using the template to fill it out. You should get a link to the survey soon after.

How do I fill out the survey? And why is this process such a hassle. I want to help push research forward but the hoops we have to go through just to fill a survey to give data will definitely discourage the average joe from coming forward.

Find it through this link man: Have you signed up to take the post drug syndrome survey? This topic is for you

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I were stupidly on an antidepressant even when i used propecia. Even minoxodil. I attribute my problems to propecia mostly but my contribution may not be so scientific so i wonder if you anyway want the survey from me?

@Tomas it‘s become apparent that you still couldn’t fill out the survey. How can we help you to complete it?

Thanks but i prefer to keep my opinion about the suevey for myself. I was banned already.

Not sure it could be much easier for the average joe. Sign up -> post Member Story -> Wait half a day to a day -> Click link in bar-chart icon in top right-hand corner of forum page -> take survey.

Hello, im an old member and i cant participate in the survey, any way to fix this?

Hi guys,
I see a lot of new people on here that have not filled out the survey.
Pls do.
Numbers are important, it’s not difficult and only takes a couple minutes.
It’s things like the survey that will put us on the map and eventually faster to a cure.

can I know the frequency of the various ssris and snris in the pssd questionnaires?

and can the pssd goal be raised to 150?

I have a question about the current results. When I click on the link (Current results can be found HERE ), I get an error.
“Oops! That page doesn’t exist or is private.”

How can I access the data? Thanks.

Hey @bigboss

Some survey results are live in the Survey Basics category. Let me know if you have any questions.

Thank you guys for your time and effort in making the survey actually happen…Can you plz tell us if and when you will be publishing the results?

Hey @silentpain89, thank you - it was a huge effort. We are definitely planning to publish reports on the data, and also hopefully use it to help us with patient selection for research participation, but we are extremely busy for the next months (hopefully) getting a lot of priority projects underway.

We also have technical issues we need to overcome before we can focus on transforming and analysing the data. We are updating our technical setup first - the servers all our systems run on - and this is turning out to be a longer process than we’d expected. Everything we do is self-funded and relies on volunteers giving their time around personal commitments and health problems (a few of us are very severely affected as you likely know).

I do apologise for the quiet on this that will probably last until later in the year regarding the results, but we’re working as hard as we can and have to prioritise where necessary.


@axolotl, can this data be made freely available to allow other members of the community (or potentially other communities such as those with a penchant for data analysis) to analyse it themselves? May be cheaper than paying somebody and potentially faster than waiting for a single person who may be too unwell or preoccupied to fulfil the role.

hey @orthogs,

The raw data? No - If there’s a patient with SQL skills that could help to process the data, I would encourage them to message a staff member to discuss helping out, as we’ve requested before. There’s many reasons, but the main ones are: The data is not in a naturally workable form: ‘answer codes’ from matrices etc won’t make head or tail of sense without knowing the backend design of the survey, and results from validated surveys need to be processed segment by segment in line with their individual scoring instructions before analysis. Secondly, there’s no informed consent to open the data that way even if this was a technical possibility.

can I find out the statistics on serotonergic drugs (based on the number of reports of the various molecules)?