I received the information that there are over 120 ACTIVE people, participating and paying on Discord. Whether it is accurate information or just approaching it is not too important for what I mean.
So why does it seem that very few people participate in other potentially useful initiatives for all of us?
I remember that for the most valuable thing we were asked to do, that is to fill out a short questionnaire in a non-anonymous way (at the end of 2018) which would then have been provided to EMA, a total of 62 participants attended. this then contributed to the updating of the SSRI and SNRI leaflets. ok, it's water under the bridge.
I would like to list some initiatives currently underway to which each of us with PSSD should make a small effort to contribute. No guarantee that through these we will have a reward, but we must try anyway. They are not in order of importance, please read everything, and above all, do.
QUESTIONNAIRES - all important to fill in carefully. if you haven't done it yet, don't wait.
- 1- Report the Adverse Drug Reaction to your country's Pharmacovigilance Agency (you'll find it easily on google). Do not be anonymous in this, or they will be able to ignore it more easily.
2- Report on RxISK: https://rxisk.org/experiencing-a-drug-side-effect/
dr. Healy frequently publishes reviews and case reports on the pssd in the medical literature, also using these important data.
3- Post-Drug Syndrome Survey: this important survey will appear three post-drug syndromes for the first time. 1. Register at https://forum.propeciahelp.com 2. Open link below and write a simple reply post in that topic with requesting Your Survey activation
https://forum.propeciahelp.com/t/post-d ... pate/34482
4- Participate in the study of Professor Fiammetta Cosci completing this survey
Male: https://docs.google.com/forms/d/e/1FAIp ... sp=sf_link
Female: https://docs.google.com/forms/d/e/1FAIp ... sp=sf_link
5- To fill out a PSSD questionnaire and be part of a possible sample for subsequent studies by Dr. Melcangi, you can request the questionnaire from this email address: roberto.melcangi@unimi.it
6- PAST Wales is running a survey about sexual side effects of antidepressants: https://forum.propeciahelp.com/t/past-w ... ects/42510
Sudoscan is a device that is used to analyze small nerve fibers. there is a penile adapter that has shown changes in the genitals of diabetic patients with sexual dysfunction. The Sudoscan owner "doesn't want to" allow some men with PSSD to try the penis adapter. However, this could be a potential diagnostic tool and could make us understand if the problem is there or not. We are invited to send a letter to the owner of Sudoscan: https://rxisk.org/business-opportunity- ... o-medical/
The British among us should send a letter to their Member of Parliament as indicated here: https://rxisk.org/the-politics-of-pssd/ He was interested in PSSD and needs to be...spurred on.
In addition, with a little more initiative, ingenuity and courage, anyone from any country can try to contact politicians, health ministers, specialists, research centers, associations for rare diseases, journalists, TV programs, etc. .. to try to move things.
One of us recently had an idea, it takes 2 minutes to participate. anyone can do it, not just the British: viewtopic.php?f=5&t=3632
Whoever has the opportunity to donate something to the Rxisk Prize: https://rxisk.org/prize/ Once reach $ 100,000, we will finally have in hand a tool that can be advertised and used in various ways to be useful: if it cannot reward those who find a cure, it could be used to research on the pssd, to attract the attention of journalists, politicians, researchers etc.
if something has been forgotten, add