Post drug syndrome survey (IMPORTANT!!)

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lw77
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Post drug syndrome survey (IMPORTANT!!)

Unread post by lw77 »

Hello guys, as they will have seen those who visit propeciahelp.com a survey regarding persistent side effects following drug use is out.
The makers (awor and axolotl) tend to overcome the concept of one drug's side effects concept, but want to consider that multiple drugs can cause persistent side effects. We are all joint toghether in this situation no matter which drug we used.
Please, get an account on propeciahelp and participate to the survey. It is important, very detailed and well done. It is very important to collect data in a systematic manner to submit to researchers, and this could be the case.
Once again if we do nothing we are going to have nothing back for sure.
Here's the project's link
https://forum.propeciahelp.com/t/post-d ... pate/34482
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TalkingAnt
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Re: Post drug syndrome survey (IMPORTANT!!)

Unread post by TalkingAnt »

Yes everyone here should go register an account on forum.propeciahelp.com and wait for a survey invite. It could provide very valuable data to the community and researchers.
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Ghost
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Re: Post drug syndrome survey (IMPORTANT!!)

Unread post by Ghost »

PLEASE do this everyone! Thanks for the help lw77!
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Snake
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Re: Post drug syndrome survey (IMPORTANT!!)

Unread post by Snake »

Ok, I've registred and done the intro part. Now waiting for the invitation.
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Northern_Star
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Re: Post drug syndrome survey (IMPORTANT!!)

Unread post by Northern_Star »

Please allow me to bump this thread. I am Northern_Star, one of the moderators of Propeciahelp. I kindly ask everyone here reading this to participate in this survey. It only takes about one hour, so everyone can easily contribute.

As many of you already know, at Propeciahelp we strongly believe that several conditions of persistent side effects after drug use are at least strongly related but are probably identical with regard to the underlying mechanism. That includes Post-Finasteride-Syndrome, Post-SSRI Sexual Dysfunction, Post-Accutane-Syndrome as well as persistent side effects after the use of (other) anti-androgens or GnRH analogs. In fact, we think that all substances that disrupt the endocrine system can cause persistent side effects in predisposed individuals. For example, we have had people who used Aromatase Inhibitors report persistent side effects.

The similarities between PFS and PSSD (as well as the other conditions) are striking and we believe that most antidepressants ultimately lead to an antiandrogenic effect just like Finasteride (or Isotretinoin=Accutane etc.) at the cellular level, which leads to androgen receptor overexpression (proven in PFS patients). Accordingly, we think that all the communities that deal with persistent side effects from the aforementioned drugs are in the same boat and ought to collaborate.

Our individual communities are small, awareness of our conditions is low and we lack the resources to undertake the significant and complicated scientific journey to understand this condition and to hopefully reverse it one day. By collaborating behind a common goal and with a shared condition, we can pool our resources, increase the affected population, and may thus be able to create more awareness as well as generate more buy-in from the medical and scientific community, which in turn may make it easier to access resources (e.g. public grants).

All this is a long way. Fortunately, at Propeciahelp we have some great individuals, who over the past decade have built a network of scientists, founded the PFS Foundation and financed studies in our condition (and if our condition indeed have the same underlying mechanism: this means studies in your condition, too). To do more and to get access to more resources, we need your help.

This survey aims to present the full scope of persistent side effects from such drugs (beyond the often-quoted sexual effects) as well as their significant impact on quality of life. This has never been done before in a systematic, data-driven way. The survey is largely based on scientifically validated questionnaires as the generated data is intended to be used to approach more scientists in relevant fields. Obviously, the data will be more impressive the more people participate. And that is where each and every one of you come into play! We need as many data points as we can get. So please, fill out the survey and encourage people here and beyond the forum who suffer from persistent side effects from the aforementioned drugs to do the same.

Please see here for more information: https://forum.propeciahelp.com/t/post-d ... pate/34482

In the same spirit, may I also encourage everyone who hasn’t yet to participate in the 23andme project. This project aims to conduct a Genome-wide association study to identify potential Genome markers that may help to explain why we experience persistent side effects while the vast majority of users of these drugs do not. You can easily participate by ordering a test at 23andme. For more information, please see: https://forum.propeciahelp.com/t/import ... pate/30857

Thank you,
Northern_Star
Jaxx
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Re: Post drug syndrome survey (IMPORTANT!!)

Unread post by Jaxx »

Northern_Star wrote:Please allow me to bump this thread. I am Northern_Star, one of the moderators of Propeciahelp. I kindly ask everyone here reading this to participate in this survey. It only takes about one hour, so everyone can easily contribute.

As many of you already know, at Propeciahelp we strongly believe that several conditions of persistent side effects after drug use are at least strongly related but are probably identical with regard to the underlying mechanism. That includes Post-Finasteride-Syndrome, Post-SSRI Sexual Dysfunction, Post-Accutane-Syndrome as well as persistent side effects after the use of (other) anti-androgens or GnRH analogs. In fact, we think that all substances that disrupt the endocrine system can cause persistent side effects in predisposed individuals. For example, we have had people who used Aromatase Inhibitors report persistent side effects.

The similarities between PFS and PSSD (as well as the other conditions) are striking and we believe that most antidepressants ultimately lead to an antiandrogenic effect just like Finasteride (or Isotretinoin=Accutane etc.) at the cellular level, which leads to androgen receptor overexpression (proven in PFS patients). Accordingly, we think that all the communities that deal with persistent side effects from the aforementioned drugs are in the same boat and ought to collaborate.

Our individual communities are small, awareness of our conditions is low and we lack the resources to undertake the significant and complicated scientific journey to understand this condition and to hopefully reverse it one day. By collaborating behind a common goal and with a shared condition, we can pool our resources, increase the affected population, and may thus be able to create more awareness as well as generate more buy-in from the medical and scientific community, which in turn may make it easier to access resources (e.g. public grants).

All this is a long way. Fortunately, at Propeciahelp we have some great individuals, who over the past decade have built a network of scientists, founded the PFS Foundation and financed studies in our condition (and if our condition indeed have the same underlying mechanism: this means studies in your condition, too). To do more and to get access to more resources, we need your help.

This survey aims to present the full scope of persistent side effects from such drugs (beyond the often-quoted sexual effects) as well as their significant impact on quality of life. This has never been done before in a systematic, data-driven way. The survey is largely based on scientifically validated questionnaires as the generated data is intended to be used to approach more scientists in relevant fields. Obviously, the data will be more impressive the more people participate. And that is where each and every one of you come into play! We need as many data points as we can get. So please, fill out the survey and encourage people here and beyond the forum who suffer from persistent side effects from the aforementioned drugs to do the same.

Please see here for more information: https://forum.propeciahelp.com/t/post-d ... pate/34482

In the same spirit, may I also encourage everyone who hasn’t yet to participate in the 23andme project. This project aims to conduct a Genome-wide association study to identify potential Genome markers that may help to explain why we experience persistent side effects while the vast majority of users of these drugs do not. You can easily participate by ordering a test at 23andme. For more information, please see: https://forum.propeciahelp.com/t/import ... pate/30857

Thank you,
Northern_Star
Thanks for coming here and take the time to express the importance of this survey Northern_Star. I believe the pfs community really is doing some great stuff in working towards a solution. Hope this motivates more people to participate!
Knifli
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Re: Post drug syndrome survey (IMPORTANT!!)

Unread post by Knifli »

Please take part in this everyone!
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Luigi
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Re: Post drug syndrome survey (IMPORTANT!!)

Unread post by Luigi »

Good to see there’s already a few from here that have completed the survey! Takes an hour of your time if that.
lw77
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Re: Post drug syndrome survey (IMPORTANT!!)

Unread post by lw77 »

Guys, as you know the two admin of the site Propeciahelp have prepared an extremely important survey on post drug intake syndromes.
Are invited to participate the people who have taken many drugs (finasteride, isotretonoine, SSRI), it's a very accurateand complete survey, nothing has been left to chance.
It is of paramount importance that you participate in the greatest possible number of people, even among us with PSSD, because it will provide a reliable data base that can be provided to scientists who intend to study the problem.

First of all you should create an account on Propeciahelp.com, then you will be invited to take part in the survey.

Here is the link:
https://forum.propeciahelp.com/t/post-d ... pate/34482

Go get the account then the survey immediately guys :D
Best
LW
chemistry
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Re: Post drug syndrome survey (IMPORTANT!!)

Unread post by chemistry »

Made the account just waiting for invitation now
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