POIS NORD RESEARCH STUDY

[Spartak]

So sad that many of us can not afford to participate.
But I am crossing fingers for the best results.

[demografx]

Thank you, Spartak! Very nice sentiment you express!

[demografx]

We are only asked to call if we request a phone appointment within the hour (changed from 24 hours) , because they may not be able to accomodate our request that soon. If we pick any times in the future, they will automatically reserve the time, they will see it, and they manually confirm that they have seen it and will call.

Hope that helps. In general, we do not need to call.

I am still confused about this. After I completed the questionnaire, I saw a little calendar with available time slots for a short 10-minute phone appointment. These were all within the next few days. Once I click on a specific time slot, a little pop-up window appears and says "to book this time slot, call ()---" I called several times (it was during business hours in LA), but it's a voicemail that answers.

Now, I can't get to the mini-calendar again, because the only way to get there is to go through the survey, which we shouldn't do. But I still have the number written down. However, it's voicemail that answers. What should I do, should I just leave a message with my name and contact info, and ask them to call me when they have a chance, and if I can't answer, to call me again? Thanks for the clarification!

Investigator, the researchers advise to please call the number and leave a message with your contact info and a time you could be reached. That way the team will be able to give you a followup call, confirm your eligibility, and answer questions you have about the study.

TO EVERYONE,  please take the survey and, if you are eligible, sign up for a follow up call - it is very brief, just 10 minutes, and the purpose is to check your medications (which would be hard to do in an online survey) and schedule your actual lab session. The only time you would see the number (and not have a time you book for a phone appointment) would be if you tried to sign up for a spot that day - so just look for an appointment the next day.

If for whatever reason you can’t sign up for that call right away, you can take down the number
(724) 638-7661
and leave a message with a time you can be reached - but the best thing is to sign up for a call at the time you go through the survey.

[Mushnikk]

We are only asked to call if we request a phone appointment within the hour (changed from 24 hours) , because they may not be able to accomodate our request that soon. If we pick any times in the future, they will automatically reserve the time, they will see it, and they manually confirm that they have seen it and will call.

Hope that helps. In general, we do not need to call.

I am still confused about this. After I completed the questionnaire, I saw a little calendar with available time slots for a short 10-minute phone appointment. These were all within the next few days. Once I click on a specific time slot, a little pop-up window appears and says "to book this time slot, call ()---" I called several times (it was during business hours in LA), but it's a voicemail that answers.

Now, I can't get to the mini-calendar again, because the only way to get there is to go through the survey, which we shouldn't do. But I still have the number written down. However, it's voicemail that answers. What should I do, should I just leave a message with my name and contact info, and ask them to call me when they have a chance, and if I can't answer, to call me again? Thanks for the clarification!

Investigator, the researchers advise to please call the number and leave a message with your contact info and a time you could be reached. That way the team will be able to give you a followup call, confirm your eligibility, and answer questions you have about the study.

TO EVERYONE,  please take the survey and, if you are eligible, sign up for a follow up call - it is very brief, just 10 minutes, and the purpose is to check your medications (which would be hard to do in an online survey) and schedule your actual lab session. The only time you would see the number (and not have a time you book for a phone appointment) would be if you tried to sign up for a spot that day - so just look for an appointment the next day.

If for whatever reason you can’t sign up for that call right away, you can take down the number and leave a message with a time you can be reached - but the best thing is to sign up for a call at the time you go through the survey.

Are we also supposed to fill out the survey if it's unlikely that we will travel to LA for the actual study? Is the survey itself already a data collection that is analyzed? I don't know whats being asked but it could potentially be helpful if analyzed by researchers as oppossed to the surveys here on the board analyzed by lay people. To describe say the comorbities, demographics, etc. of POIS sufferers.

[demografx]

So sad that many of us can not afford to participate.
But I am crossing fingers for the best results.

Spartak, I empathize fully with the sadness.

[demografx]

Are we also supposed to fill out the survey if it's unlikely that we will travel to LA for the actual study? Is the survey itself already a data collection that is analyzed? I don't know whats being asked but it could potentially be helpful if analyzed by researchers as oppossed to the surveys here on the board analyzed by lay people. To describe say the comorbities, demographics, etc. of POIS sufferers.

Mushnikk, they don’t want to discourage anyone from filling it out, but realistically it won’t do much if folks know they can’t participate due to logistics. In order to protect participants‘ confidentiality and privacy, they aren’t allowed to analyze those data for anything other than screening people for the study, and have to delete the data once they’ve determined folks eligibility and completed recruitment. And the screener is very limited in what it assesses - it is not a comprehensive survey that asks about comorbid conditions and so on.

Best,
Demo

[demografx]

Please post here when the recruiting ads are posted and please provide a link.  I am in the SF area and would drive down for any research testing.

Samir, are you caught up with the Los Angeles POIS Study info?

Please see if you qualify!

Regards,
Demo

[demografx]

Please post here when the recruiting ads are posted and please provide a link.  I am in the SF area and would drive down for any research testing.

Samir, are you caught up with the Los Angeles POIS Study info?

Please see if you qualify!

Regards,
Demo

Update: CONGRATULATIONS, Samir, on qualifying!!

[Samir]

Please post here when the recruiting ads are posted and please provide a link.  I am in the SF area and would drive down for any research testing.

Samir, are you caught up with the Los Angeles POIS Study info?

Please see if you qualify!

Regards,
Demo

Update: CONGRATULATIONS, Samir, on qualifying!!

Thank you!  I'm looking forward to hopefully being a part of it.

[demografx]

POIS VOLUNTEERS: More about the POIS Grant that we funded...





“Crowdfunded grant will help
UNL researcher study
sex-related condition [POIS]”

By Chris Dunker  Jun 26, 2019



Hundreds of millions of dollars slated for research flow into the University of Nebraska-Lincoln each year from federal agencies like the National Science Foundation and the U.S. Department of Agriculture.

Multimillion-dollar research projects that center on creating new materials that will make computers even faster or to study drug addiction in rural areas are a large part of UNL's $308 million in research expenditures this year.

But there are also research grants that fly under the radar while also advancing understanding of the human condition.

Take a recent grant awarded to UNL researcher and assistant professor of psychology Tierney Lorenz from the National Organization of Rare Disorders to study a little-known condition affecting men following ejaculation.

Through a crowdfunded grant totaling $31,000, Lorenz and California-based neuroscientist and sex researcher Nicole Prause will study post-orgasmic illness syndrome, or POIS, the rapid onset of flu-like symptoms in men at the conclusion of sex.

"It's a fairly rare condition, and it hasn't gotten much clinical attention," Lorenz said of the disease, which is commonly marked by coughing and sneezing, sore throats and stuffy noses as well as other physical symptoms.

Some men have reported cognitive difficulties such as a loss of attention span or memory loss. Symptoms can last for a few hours or as long as a week, Lorenz added.

"It's not life-threatening in any way, but these guys can get pretty sick, and the flu can take a big chunk out of their life," she said.


An online community for men who suffer from the disorder raised the funds and worked with the nonprofit National Organization for Rare Disorders in asking for research proposals. Lorenz and Prause's study of the "Autonomic, endocrine, and immune mediators of post-orgasmic illness syndrome" was accepted earlier this year.

The researchers believe a better understanding of the disorder could further larger insight into the physiology of the human orgasm, which could improve sexual health for all, even those without the condition.

It also signals a new track of research at UNL. Lorenz, who just completed her first year on faculty, is the director of the Women, Immunity and Sexual Health lab, which studies how sexual behavior in women affects their immune and endocrine functions, while also providing help to survivors of sexual trauma through basic science and clinical research.


Lorenz, as well as Prause, previously conducted research at the Kinsey Institute at Indiana University Bloomington, where she studied the suppression of women's immune systems during ovulation -- an evolutionary change to prevent the immune system from attacking sperm cells or a zygote -- and whether sexual activity modulates that suppression.

She said the forthcoming POIS study, which will largely take place in Prause's lab in California, is a continuation of her work understanding the larger immune effects of the sexual response cycle.

"It's a really rare condition in which the whole system kind of goes haywire," Lorenz said, "but when we understand how something breaks down, it also helps us understand how it works."

 Tierney Lorenz


POISCenter-funded NORD PI (Principal Investigator)
and researcher Dr. Tierney Lorenz
Dr Lorenz was a Post-Doctoral Research Fellow at The Kinsey Institute:
https://tinyurl.com/y2c6ryod





POISCenter-funded NORD researcher/co-Investigator
Dr. Nicole Prause’s TedX talk on orgasm:
https://m.youtube.com/watch?v=aK-zBBSqFV4

[hurray]

Great article Demo!

Hopefully we are heading towards a breakthrough 

[demografx]

Thanks, hurray, I feel strongly - like never before - that we are!!
Best wishes,
Demo

[Samir]

This is really great.   Man, it will be so cool if I get to share what I know as part of the research study.

[demografx]

Samir, I hope so!

[Samir]

I qualify.   And I think many of us here would qualify--but you must fill out the survey as that is the first step. 

The researchers are still actively looking for recruits and will schedule the lab day in LA around your schedule including doing it on weekends so I strongly urge you to take the survey to see if you qualify.  Flights in and out of LA are quite cheap if you plan it in advance and may be the best investment you've ever made in your own battle against POIS.

[demografx]

I qualify.  

Wonderful, Samir!

[demografx]

I qualify.   And I think many of us here would qualify--but you must fill out the survey as that is the first step. 

The researchers are still actively looking for recruits and will schedule the lab day in LA around your schedule including doing it on weekends so I strongly urge you to take the survey to see if you qualify.  Flights in and out of LA are quite cheap if you plan it in advance and may be the best investment you've ever made in your own battle against POIS.

Samir, thank you for this excellent message to all study volunteers!

[Samir]

Thank you for helping set up the study.  For the first time in my life I feel a big sense of hope that we'll have a common cure for this inside of my lifetime.

[demografx]

Thank you for helping set up the study.  For the first time in my life I feel a big sense of hope that we'll have a common cure for this inside of my lifetime.

Samir, you expressed my sentiments exactly!

[Clues]

I'm not able to participate in the study, but I'd like to thank everyone who's able to attend! Good luck everyone.