Hot off the press

[La_pet1te_mort]

abc

[Muon]

Hi La_Pet1te_Mort,

Congrats on the paper and thanks for the effort. I have read the paper and got questions/suggestions.

1) What do you mean by first assessment, is there another one in the making?

2) One thing that isn't mentioned in any POIS paper to date as far as I know is the induction of POIS symptoms by release of pre-ejaculate. There is a bunch of members here that don't need to ejaculate, pre-ejaculate is a trigger in these men. This could tell us something about the nature of the syndrome as a whole or only in a subset of men. I'd like to see this mentioned in future papers.

3) More of an idea: This has already been organized by demografx but I would like to see some kind of decentralized parallel study to that one about blood/urine markers. Let patients go to labs to test a set of blood/urine markers determined by the poiscenter community. This obviously has its flaws but it's something that can be done quick. Just some food for thought.

[demografx]

Greetings everyone,

I am very happy to announce the publication of our paper! We did it!

Largest survey of POIS sufferers to-date, published in a peer-reviewed medical journal. Hopefully, this will pique the interest of other researchers in the field. The survey data is publicly available and, because it is described in a journal article, that makes it easier for other scientists to use it in their own research.

I want to thank everyone who took the survey, as well as all the forum moderators. I especially thank Quantum for all of his extensive help. Without all of you, this paper would not happen.

* The abstract on the journal website: https://www.nature.com/articles/s41443-019-0154-7
* The full paper (view only): https://rdcu.be/bFIqy

For more information, see the survey website: https://sites.google.com/view/the-pois-survey

I will be posting the survey data on the website within the next few days.

Enjoy!

Best
Demo

ps - La_pet1te_mort, I’m honored to have been your very first survey respondent!

[Nas]

Thank you la_petit_mort
You have done us a great service and we are ever thankful for your efforts.

[demografx]

From:        Dr. Tierney Lorenz
Date:        June 6, 2019 at 11:59:00 AM PDT
To:            demografx
Cc:            Dr. Nicole Prause

Subject:    Re: POIS paper published

Wonderful - what a great resource for us!

Thanks for sending it along.

TKL

[demografx]

Now we have some great “ammunition” (LPM’s published survey) that we can take into a doctor’s office and validate the fact that POIS is a real medical condition, not something that is “all in your head”!

Try it. Bring this paper to your skeptical doctor. In 2005, I brought Waldinger’s startup article on POIS to my endocrinologist. And even that worked. It didn’t hurt that Dr. Waldinger’s co-author was...also an endocrinologist!

[demografx]

I especially thank Quantum for all of his extensive help.

Most enthusiastically, I second that.

Quantum, you have brought much needed skills AND temperament to this forum.

Thank you!

[Quantum]

Greetings everyone,

I am very happy to announce the publication of our paper! We did it!

Largest survey of POIS sufferers to-date, published in a peer-reviewed medical journal. Hopefully, this will pique the interest of other researchers in the field. The survey data is publicly available and, because it is described in a journal article, that makes it easier for other scientists to use it in their own research.

I want to thank everyone who took the survey, as well as all the forum moderators. I especially thank Quantum for all of his extensive help. Without all of you, this paper would not happen.

* The abstract on the journal website: https://www.nature.com/articles/s41443-019-0154-7
* The full paper (view only): https://rdcu.be/bFIqy

For more information, see the survey website: https://sites.google.com/view/the-pois-survey

I will be posting the survey data on the website within the next few days.

Enjoy!

Thank you so much, LPM, for all the time you have put in this project !  Congratulations for the publication !

And thanks for your good words about me.  I am happy to have been able to contribute to this great project, a milestone in the history of POIS research !

POIS being rare, the lack of data has always been a hindrance for researchers.  Now, they at least have a substantial set of data to begin with. This will be a motivating factor for some to start a POIS study 

[Quantum]

I especially thank Quantum for all of his extensive help.

Most enthusiastically, I second that.

Quantum, you have brought much needed skills AND temperament to this forum.

Thank you!

Thanks Demo !

[aswinpras06]

Thanks a lot LPM, Quantum and Demo for your huge effort, to post our POIS survey results  in a peer reviewed medical journal.  Our problems will now be known more clearly to the medical community.  Along with NORD’s POIS Study,  hopefully we get more of their attention than ever before. 

[demografx]

Thanks a lot LPM, Quantum and Demo for your huge effort, to post our POIS survey results  in a peer reviewed medical journal.  Our problems will now be known more clearly to the medical community.  Along with NORD’s POIS Study,  hopefully we get more of their attention than ever before.

That’s our plan exactly!

Nicely said, aswinpras!

[nanna1]

Congratulations La_pet1te_mort, great job!

[demografx]

I echo nanna1!
 

[Gino]

Just saw this - Congrats on getting the research out there!!

I have no doubt that information like this will help countless people around the world when seeking medical advice.

From personal experience, it's daunting trying to explain the subjective torture to a doctor let alone trying to comprehend it yourself. So having key information in a medium that is easily digested and respected by the medical profession is an HUGE leap forward.

Also, to all the contributors on this forum, thank you so much. You may have saved my life a few times over the years by giving me hope. It's an amazing feeling knowing there's a global community working together to solve this affliction.

I know that the feeling of isolation, through lack of medical understanding and therefore lack of support, can be almost as bad as the days-long POIS symptoms themselves. Just reading on this forum that others experiencing similar symptoms have led happy, productive and otherwise normal adult lives has kept me going when things got tough.

I'm glad to report that these days I'm kicking my own personal goals in my relationships, career and business but only since actively putting a mental ring-fence around the 'issue' of POIS. The turning points was that once I knew what it was, accepted it and then managed my life around it, I was able move ahead in life.

I'm looking forward to the day when we have a standardized treatment (or maybe even a cure). I'm always checking back here for updates

Keep up the awesome work. It's appreciated more than you could imagine.

[demografx]

Gino, welcome to the forum!

It is teriffic for all the active posters here to know that many, many hundreds, maybe thousands of silent readers are being helped by all our words. And actions!

Thank you very much for reminding us, Gino!

[Observer]

Gino, welcome to the forum!

It is teriffic for all the active posters here to know that many, many hundreds, maybe thousands of silent readers are being helped by all our words. And actions!

Thank you very much for reminding us, Gino!

Very wise words from demo and Gino.

[demografx]

Thanks, Observer!