Looking for help with merging the PSSD survey into a prevalence survey

I have been emailing lots of mental health charities that do research lately asking them to include side effects including Post-SSRI Sexual Dysfunction. They all said no to including side effects full stop.

I documented this a bit on a medium article. I then ran a twitter poll over christmas that lasted 5 days of which the results are included in that article and then forwarded the feedback free of charge to Mind the mental health charity. They still say no.

I might start a petition on change.org and go in public (like speakers corner every weekend) to garner signatures, to pile pressure/bad PR on Mind.

I really want to spread a PSSD prevelance survey to find out the prevelance in clinic waiting rooms ideally, but all the mental health charities won’t even create or put their name to a survey. Is there a way that I can use the PSSD survey or an adapted version you have made here at the PFS foundation to discover PSSD prevelance and that may pass the criteria of an NHS ethics so I can approvingly place them in clinic waiting rooms?

Maybe it would be have to unsuggestive of topic and include a control group of people that have never taken antidepressants or isotretnion or finasteride and have still questions on if they have developed sexual dysfunction.

Do you think this is possible? Any suggestions on how I could make all this happen or should give up on the idea are welcome.

Thank you very much

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So I can understand better, can you post the questions you want to ask, I don’t have time to follow your links, sorry.


The post-drug syndrome patient survey here is rather comprehensive and time consuming for something to be dispensated in waiting rooms, if that is what you are considering?

There are validated questionnaires used to gauge sexual function/dysfunction that are available like the IIEF and ASEX that, if I’m not mistaken, have been tested against control groups. The problem would be getting them into the clinics and then collecting the data.

That sucks how they automatically turned down your suggestion. Do you know any doctors or organizations who would be willing to approach them about prompting patients regarding sexual dysfunction from psychiatric meds?

Have you done any investigating into the major funding sources for the charities you have approached? The backgrounds of their boards of directors? Are they perhaps heavily involved in connecting patients in need with safe drugs that can help them?

Sorry if this just seems like a wall of rhetorical questions. Just throwing some ideas out there to help and to get a clearer picture of what you are trying to accomplish and how.


Yes a shorter survey just about prevalence to be dispensed in waiting rooms would be the idea.

Maybe I could ask some doctors to ask instead of me but I presume the answer will be no, as it was to me. I am still playing email table tennis with mental health charities on this question, always a no.

I am trying to find out where Mind’s funding sources for their survey’s come from as they are so insistent on not allocating any resources for side effects to be included.

Ideally the mental health charity Mind would conduct a PSSD prevalence survey that I could help dispense in clinic waiting rooms. Trying to find a backup work-around but stuck.