Letter to University profs. Feel free to copy!

[ac2022]

Many science groups don't have an exciting field to do science on. Resulting in sciene in really strange things sometimes. Some are happy if they can do something useful which hasn't been researched much already.

I have therefore started to send out letters to professors at Universities who had to do with neurology or hormones.

Here is what I wrote. Please feel free to copy it and to send it to people in your city:
-----------------------
Dear Prof. XXXXX,

I suffer from PSSD after taking the antidepressant Sertraline (https://de.wikipedia.org/wiki/Post-SSRI ... ysfunction).

Most of those affected accept this tacitly (as with finasteride), so the number of unreported cases is high.

It is only recently that the topic has become somewhat more public through reports on television.

The number of researchers working on this topic is therefore still negligible.

Due to the lack of libido, most of those affected have lost an important part of their lives. Basic research is necessary to understand the mechanisms behind this event.

Could I therefore ask you if you know of any research groups that are still looking for an exciting topic?

Of course I would be happy to make myself available for testing purposes, and I know enough people through my PSSD group who would also like to do so.


Thank you very much for your attention and (if time allows) an answer.


With kind regards,



-----------------------------------------------------------
German version:

Sehr geehrte Frau Professor XXXX,


ich leide nach der Einnahme des Antidepressivums Sertralin unter PSSD (https://de.wikipedia.org/wiki/Post-SSRI ... ysfunction).

Die meisten Betroffenen finden sich stillschweigend damit ab (so wie bei Finasterid), deshalb ist die Dunkelziffer hoch.

Erst seit Kurzem wird das Thema durch Berichte im Fernsehen etwas publik.

Die Anzahl der daran Forschenden ist dementsprechend noch verschwindend gering.

Durch das Fehlen von Libido ist den meisten Betroffenen ein wichtiger Teil ihres Lebens abhanden gekommen. Es ist Grundlagenforschung nötig, um die Mechanismen hinter diesem Geschehen zu verstehen.

Dürfte ich Sie deshalb fragen, ob Sie möglicherweise Forschungsgruppen kennen, die noch ein spannendes Thema suchen?

Ich würde mich selbstverständlich auch gerne selbst zu Testzwecken zur Verfügung stellen, und ich kenne über meinen PSSD-Gruppe genügend Leute, die dies ebenfalls gerne tun würden.


Vielen Dank für Ihre Aufmerksamkeit und (falls es Ihnen die Zeit erlaubt) eine Antwort.


Mit freundlichen Grüßen,

[vkn1]

I personally would include a bit about the implications of not having libido. It’s not so much that we are deprived of sexual pleasure but that we are rendered incapable of providing a critical component to relationships, have difficulty having children, etc. The primary effect is on our families and ability to contribute to society. If we have obtained the status while already married it can mean the destruction of household etc. It’s these things as well as the isolation it yields that are catastrophic rather than what might think at a glance or would never realize without deliberate thought or personal experience.

[Numby]

In case you are talking about PSSD Hilfe Deutschland e. V. I would like to emphasize that you are NOT writing on behalf of the managing committee! PSSD Hilfe Deutschland e. V. is NOT “your” association. Please edit your post immediately and remove reference to PSSD Hilfe Deutschland e. V. All actions taken by PSSD Hilfe Deutschland e. V. require explicit permission by the managing committee. Please also inform every single professor you have contacted so far that you are NOT writing on behalf of PSSD Hilfe Deutschland e. V. Thanks.

You are NOT entitled to write in our name and PSSD Hilfe Deutschland e. V. does NOT support any of your actions.

@Sonny @ghost: please delete ac2022’s post.

[Jaxx]

In case you are talking about PSSD Hilfe Deutschland e. V. I would like to emphasize that you are NOT writing on behalf of the managing committee! PSSD Hilfe Deutschland e. V. is NOT “your” association. Please edit your post immediately and remove reference to PSSD Hilfe Deutschland e. V. All actions taken by PSSD Hilfe Deutschland e. V. require explicit permission by the managing committee. Please also inform every single professor you have contacted so far that you are NOT writing on behalf of PSSD Hilfe Deutschland e. V. Thanks.

You are NOT entitled to write in our name and PSSD Hilfe Deutschland e. V. does NOT support any of your actions.

@Sonny @ghost: please delete ac2022’s post.

Where does it mention this would be behalf the PSSD Hilfe Deutschland organization?
Also @Sonny doesnt work technically (he wont get a reminder of any kind) and because Sonny is rather inactive for several years now

[Numby]

He refers to PSSD Verein as “his” association and is actually doing exactly what we are doing in a more coordinated way. So professors will receive letters from him where he refers to PSSD Hilfe as “his” association. And this is exactly what we were warned about by one of the professors.

[Jaxx]

Thanks for clarifying. Although it's a grey area, ive updated the email to avoid any false associations. "Association/Verein" is now "Group/Gruppe".

Feel free to use another word, but stay clear from the official association please.
Furthermore, this condition is too rare to have different fractions fighting each other, so i hope you can work together, or at least respect each other in parallel activities.

[squirtleSquirtle]

Many science groups don't have an exciting field to do science on. Resulting in sciene in really strange things sometimes. Some are happy if they can do something useful which hasn't been researched much already.

I have therefore started to send out letters to professors at Universities who had to do with neurology or hormones.

Here is what I wrote. Please feel free to copy it and to send it to people in your city:
-----------------------
Dear Prof. XXXXX,

I suffer from PSSD after taking the antidepressant Sertraline (https://de.wikipedia.org/wiki/Post-SSRI ... ysfunction).

Most of those affected accept this tacitly (as with finasteride), so the number of unreported cases is high.

It is only recently that the topic has become somewhat more public through reports on television.

The number of researchers working on this topic is therefore still negligible.

Due to the lack of libido, most of those affected have lost an important part of their lives. Basic research is necessary to understand the mechanisms behind this event.

Could I therefore ask you if you know of any research groups that are still looking for an exciting topic?

Of course I would be happy to make myself available for testing purposes, and I know enough people through my PSSD group who would also like to do so.


Thank you very much for your attention and (if time allows) an answer.


With kind regards,



-----------------------------------------------------------
German version:

Sehr geehrte Frau Professor XXXX,


ich leide nach der Einnahme des Antidepressivums Sertralin unter PSSD (https://de.wikipedia.org/wiki/Post-SSRI ... ysfunction).

Die meisten Betroffenen finden sich stillschweigend damit ab (so wie bei Finasterid), deshalb ist die Dunkelziffer hoch.

Erst seit Kurzem wird das Thema durch Berichte im Fernsehen etwas publik.

Die Anzahl der daran Forschenden ist dementsprechend noch verschwindend gering.

Durch das Fehlen von Libido ist den meisten Betroffenen ein wichtiger Teil ihres Lebens abhanden gekommen. Es ist Grundlagenforschung nötig, um die Mechanismen hinter diesem Geschehen zu verstehen.

Dürfte ich Sie deshalb fragen, ob Sie möglicherweise Forschungsgruppen kennen, die noch ein spannendes Thema suchen?

Ich würde mich selbstverständlich auch gerne selbst zu Testzwecken zur Verfügung stellen, und ich kenne über meinen PSSD-Gruppe genügend Leute, die dies ebenfalls gerne tun würden.


Vielen Dank für Ihre Aufmerksamkeit und (falls es Ihnen die Zeit erlaubt) eine Antwort.


Mit freundlichen Grüßen,

To make your case much more credible, consider replacing the Wikipedia link with the list of current publications on PSSD that I have put together at the following link:
https://drive.google.com/open?id=1DafRh ... ZYjgOYdiX3

As a senior PhD student in Canada, I can tell you that at least in North America, the only language that professors speak is $$$ funding $$$. I hope you have success with your attempt to generate academic interest within the European academic setting. If your attempt is not successful due to the presence of a similar academic financial incentive structure as the one in place in Canada and the United States, consider thinking about possible fund raising efforts.

In my opinion, as both PhD student and employed research scientist, our best shot at getting serious academic studies started is to raise about $100,000 on our own as a community. I know this sounds like a lot of money… but it’s actually very little if you break down the math. If even just 1000 of the people that use this forum put in $100 a single time 1000 x $100 = $100,000. I think most of the men on this forum have spent much more than $100 on Viagra/Cialis alone in a given year of PSSD… Think about that for a moment. What could we afford if we put all of that money together?

From there, the scientists on this forum like myself could put together a request for proposal to get University labs to bid on the project (and our community picks who gets awarded the project), or we could allow Dr. Healy to pick the lab of his choosing on behalf of our community. Either way, unless things are different in Europe, the equation is simple:
Funding => Research

Additionally, because my brother has a PhD in neuroscience from a Canadian university and is currently in medical school in Canada as well, I have contacts in many of the more prominent neuroscience/neurology research labs in the country, and some on the east coast of the United States as well. If we could generate the funding required for a research campaign, I would be more than willing to put a rigorous research proposal together with all of your input and find the best suited lab to carry out the work.

HOWEVER, after directly communicating with Dr. Healy himself earlier this week through the line of contact established by a dedicated member of this community, I am very pleased with his resounding willingness to work directly with us. In my opinion the best path forward for all of us consists of
- Raising research funding from within our own community instead of looking outward for help
- Having the qualified scientists of our community (myself included) step forward and meet face to face with Dr. Healy to put a rigorous and budgeted research proposal together that represents the collective interests and goals of our community
- Allowing Dr. Healy the authority to award the funding and statement of work outlined in the research proposal to a lab of his choosing (pending the approval of our community)


We have a rich and diverse community of thousands and thousands of people from all walks of life and professional backgrounds on every corner of this planet. It’s time for us to take responsibility of our own destiny and work together to utilize the vast array of resources that we have. We truly do have the power to solve this problem as soon as we learn to work together. I am calling on all of you to decide that the time is NOW.

Let’s get to work! What could possibly be more important?

Squirtle Squirtle!
-Squirtle