Post Orgasmic Illness Syndrome (P.O.I.S.)

General Category => POIS Research => Topic started by: demografx on May 08, 2019, 01:50:30 PM

Title: POIS 2021-2022 NORD RESEARCH STUDY
Post by: demografx on May 08, 2019, 01:50:30 PM
POIS 2021-2022 NORD RESEARCH STUDY

“For the study of post-orgasmic illness syndrome, with funding from POISCenter.com:
Tierney Lorenz, Ph.D., University of Nebraska-Lincoln (Lincoln, NE); Autonomic, endocrine, and immune mediators of post-orgasmic illness syndrome

UPDATE:
From Dr Nicole Prause
POIS co-Investigator
May 8, 2019:

Hi Demo,

Dr. Lorenz and I received the pre-review from
the IRB [defined in post below - Demo] just yesterday. We read the comments, and they appear very reasonable. That is, we expect that we can fully satisfy all of the questions. We have a meeting scheduled between the two of us next week to generate our response.

The full review remains scheduled for May 30th. The pre-review is just a chance to catch anything that the reviewer feels would have been likely to create questions during the full review to speed up the process.

Feel free to share this information.

NP

Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on May 08, 2019, 01:51:22 PM
The Institutional Review Board (IRB) is an administrative body established to protect the rights and welfare of human research subjects recruited to participate in research activities conducted under the auspices of the institution with which it is affiliated.

In our case, it’s the UNL (University of Nebraska - Lincoln) IRB
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: fernab on May 08, 2019, 02:20:35 PM
Thank you Demo for updating us!

Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on May 08, 2019, 02:21:32 PM
fernab, you’re quite welcome.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on May 14, 2019, 09:07:12 PM
May 13 article: interview with Dr Nicole Prause, our POIS Study co-investigator:

Mentions our POIS Grant:
“We (Tierney Lorenz, PhD and I) also just received a grant to study post-orgasmic illness syndrome (POIS) from the non-profit National Organisation of Rare Disorders.”

https://tinyurl.com/yx8v6lu9
Title: Re: POIS 2021-2022 NORD RESEARCH STUDY
Post by: demografx on May 30, 2019, 10:51:40 AM
POIS 2021-2022 NORD RESEARCH STUDY UPDATE

From Dr Nicole Prause
May 8, 2019:

Hi Demo,

Dr. Lorenz and I received the pre-review from
the IRB [defined in IRB explanatory post above - Demo] just yesterday. We read the comments, and they appear very reasonable. That is, we expect that we can fully satisfy all of the questions. We have a meeting scheduled between the two of us next week to generate our response.

The full review remains scheduled for May 30th. The pre-review is just a chance to catch anything that the reviewer feels would have been likely to create questions during the full review to speed up the process.

Feel free to share this information.

NP

Everyone, please keep your fingers crossed
(a proven scientific methodology :) )

Today, May 30, 2019, is the

FULL IRB REVIEW

of our self-funded POIS study at

University of Nebraska - Lincoln

& Liberos LLC laboratory - L.A.

Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: fernab on May 30, 2019, 01:49:53 PM
Crossing fingers!

Thank you for updating us Demo!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on May 30, 2019, 06:23:42 PM
You’re welcome, fernab.

Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on May 30, 2019, 10:06:56 PM
Great news! The IRB [defined earlier in an above post] discussed our researchers’ protocol and reviewed it favorably. They are requesting some minor modifications, and some clarification of the overall protocol. Those should take about 4 to 6 weeks to complete and be approved. Then, the grant will need to be put into the financial system, and they will need to hire a technician on site in Los Angeles. So, we are looking at a start date approximately 2 - 3 months from now. Longer than we would like to wait, but not the six months delay that we had feared.

They are very excited to get started!

They thank you all for your patience throughout this whole process, and your faith in the research team - they will do their best to make solid progress in understanding POIS and help those who are suffering.

Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Quantum on May 31, 2019, 06:45:36 AM
Thanks for the update, Demo !

The process follows its normal course.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: fernab on May 31, 2019, 06:49:25 AM
Thank you Demo!.... yes we have to be very patient....no choice!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on May 31, 2019, 02:01:47 PM
Thanks, Quantum and fernab. Patience is the perfect word: some of us here have been waiting for this moment for 12 years! ;D
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on May 31, 2019, 03:23:06 PM
TV interview with Dr Nicole Prause, NORD’s POIS Study co-Investigator:

https://m.youtube.com/watch?v=a9324O7usS4

Her interviews, articles and videos are not presenting her ideas about POIS. That work is yet to come. They are presented to give you a better idea of her and her research/style of thinking.

Also keep in mind that Dr Tierney Lorenz (you can refer to her as Dr L) is the PI (Principal Investigator). However, Dr Prause’s work appears more often in popular/mass/news media, e.g., TV, radio, conferences, podcasts, magazine articles.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on June 15, 2019, 12:51:08 PM
One further note on this subject: this study is a basic science investigation into the mechanisms that lead to POIS symptoms, not an intervention study. So Dr. Lorenz & Dr. Prause won’t have multiple recruitment sites (like you might see in a treatment study, where there are multiple clinical centers tracking different cohorts of patients). Just the one in Los Angeles, where they can use the very specialized testing center at Liberos, LLC.

Above is being re-posted here for the benefit of those who asked about a possible European site for studying POIS.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on June 17, 2019, 01:31:32 PM
Published on Oct 26, 2017
Following a series of accusations of sexual harassment, disgraced Hollywood producer Harvey Weinstein has reportedly checked himself into rehab for sex addiction -- a condition that some medical experts doubt.

Dr. Nicole Prause - our new POIS Study Co-Investigator joins CBSN to discuss the validity of these claims.



https://m.youtube.com/watch?v=5wihRWBiz5s
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on June 20, 2019, 05:45:35 PM
Dr. Tierney Lorenz and Dr Nicole Prause have just sent their responses for the requested revisions to the IRB (IRB is defined again several posts down). Once they received them, they could respond with additional questions.

The POIS researchers expect/hope that they will have approval to begin the study (i.e., order equipment, program tasks, etc.) in the next few weeks.

Progress!


Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Nas on June 20, 2019, 05:57:40 PM
Anyone recruited yet?
Keep the names classified obviously, just want to know numbers?
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on June 20, 2019, 06:02:48 PM
No, Nas, not yet. They have an ad campaign prepared (confidential, we can’t see it yet).

And with Quantum’s help, we will reach out by email to all 800 members.

They will also approach other groups, e.g., Facebook. Feel free to alert them, I am not in touch with them.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on June 20, 2019, 06:04:20 PM
Nas, good question. I’ll send them our post exchange here (about recruiting). Thanks again.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on June 20, 2019, 06:08:12 PM
The Institutional Review Board (IRB) is an administrative body established to protect the rights and welfare of human research subjects recruited to participate in research activities conducted under the auspices of the institution with which it is affiliated.

In our case, it’s the UNL (University of Nebraska - Lincoln) IRB

Re-posted. The term “IRB” is used frequently.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Nas on June 20, 2019, 07:53:37 PM
I will try to alert the FB members. What should I tell them? To make accounts in this forum? Or they can send me their email address and I can send them to you?
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on June 20, 2019, 08:05:24 PM
Thanks, Nas! Let’s wait till we get closer. and see. We’re not anywhere near implementing recruitment till IRB clears the way. And NORD. Maybe we’ll post an ad at FB group. Maybe ad-augmented FB emails can also work well. If FB’ers are registered here, we’ll have their emails. That might be the most efficient way. But the email campaign has yet to be planned/structured, with me, Quantum (our technical email genius) and the NORD researchers. It was done once successfully for the LPM survey, but it takes 12+ hours. Very slow process!

At this time, the study still needs final approval from IRB. And NORD. Let’s coordinate as soon as we’re approved to go. We’re still at the stage of keeping our fingers crossed :)
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on June 21, 2019, 07:03:54 PM
From Dr. Tierney Lorenz (POIS Study PI [Principal Investigator]) :

“We are glad to be moving the project forward, although I know the pace is frustratingly slow. (Thank you for your continued patience!)

We are hopeful that this study will garner further clinical interest, but also interest from basic scientists who are researching the physiologic mechanisms of arousal and orgasm. Sometimes the most compelling information about basic physiology comes from rare conditions like POIS. One of my mentors on residency described this kind of work as “tracking down what makes the car rattle so you can learn how to build an engine”. This is part of why our study is mechanistic, rather than intervention oriented (at least at this stage) - the more we can show that understanding POIS will help not only POISers but also, well, everyone, the more likely we will be able to convince larger funders like NIH that it is worth pursuing.

Best -
Dr L “

This was in response to my email thanking the researchers greatly for their longterm commitment to curing POIS!

The NIH invests nearly $39.2 billion annually in medical research!!
Demo
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on June 25, 2019, 02:08:03 PM
Posted today by Dr Nicole Prause, our POIS Study co-Investigator

Ecstatic to share that Dr. Tierney Lorenz and I have received a grant from the National Organization of Rare Diseases (NORD) to study Post-orgasmic illness syndrome (POIS). The study design uses cutting edge biotechnology, unique endocrine assessments currently unknown for orgasm response, and tests models of POIS that we hope will lead to better treatment.
https://rarediseases.org/nord-awards-ten-new-grants-eight-disease-states-rare-disease-research/
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on June 25, 2019, 02:14:33 PM
From Dr. Prause’s email to me:

“It looks like we are in the news with this press release today!
https://rarediseases.org/nord-awards-ten-new-grants-eight-disease-states-rare-disease-research/

So I finally shared too:
https://twitter.com/NicoleRPrause/status/1143573705953435649 
 
Nicole Prause, Ph.D. “
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: fernab on June 25, 2019, 02:36:22 PM
Thank you Demo for all this updates!!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on June 25, 2019, 02:38:51 PM
Thanks, fernab! You are a great help.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on June 25, 2019, 04:52:32 PM


FROM MY GOOGLE ALERT ON POIS  (you can sign up for your own alert here: https://www.google.com/alerts )

   Postorgasmic Illness Syndrome

As-it-happens update June 25, 2019

NEWS   
NORD Awards Ten New Grants in Eight Disease States for Rare Disease Research

Tierney Lorenz, Ph.D., University of Nebraska-Lincoln (Lincoln, NE); Autonomic, endocrine, and immune mediators
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on June 27, 2019, 06:34:28 AM
GOOGLE ALERT TODAY

 Google   
Postorgasmic Illness Syndrome
As-it-happens update    June 27, 2019
NEWS   
Crowdfunded grant will help UNL researcher study sex-related condition
Lincoln Journal Star
Lorenz and Prause's study of the "Autonomic, endocrine, and immune mediators of post-orgasmic illness syndrome" was accepted earlier this year.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on June 27, 2019, 03:38:41 PM
I will try to alert the FB members. What should I tell them? To make accounts in this forum? Or they can send me their email address and I can send them to you?
It looks like our email system is *not* ready to use. We will use posting.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Nas on June 27, 2019, 03:46:55 PM
Not a problem, I guess just pin a post in this website so that visitors can get the information they need.
Tell me when to alert them.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on June 27, 2019, 06:14:16 PM
I will. But please be patient, Grant kickoffs like this can try anyone’s patience!

Also, not sure at this time if we will post or if the researchers will. And maybe posting directly at FB.

I’ll keep you “posted” lol.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on June 30, 2019, 05:38:47 PM


”Crowdfunded [from our forum!!] grant will help UNL researcher study sex-related condition [POIS]”


Dr. Tierney Lorenz, our POIS Study Principal Investigator


(http://cb3.unl.edu/wp-content/uploads/2018/08/Lorenz_cropped.jpg)



Journal Star link:

http://tinyurl.com/y48syzo6
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Muon on July 01, 2019, 04:04:04 AM
Can't acces the link because of EU censorship, nice:

451: Unavailable due to legal reasons
We recognize you are attempting to access this website from a country belonging to the European Economic Area (EEA) including the EU which enforces the General Data Protection Regulation (GDPR) and therefore access cannot be granted at this time. For any issues, contact webmaster@journalstar.com or call 877-760-6006.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: fernab on July 01, 2019, 04:07:28 AM
Yes, I see the same error message...
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Muon on July 01, 2019, 04:22:57 AM
Orwellian measures, a small step closer to 1984.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Nas on July 01, 2019, 12:16:20 PM
Orwellian measures, a small step closer to 1984.
Come to Iraq, you can see the link here haha.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Muon on July 01, 2019, 01:29:27 PM
Orwellian measures, a small step closer to 1984.
Come to Iraq, you can see the link here haha.
Thanks for the invitation Nas but there is no need. Western Europe is already transforming into the next Middle East, I just have to be patient.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on July 01, 2019, 02:24:49 PM

Can't acces the link because of EU censorship, nice:



Yes, I see the same error message...



”Crowdfunded [from our forum!! - Demo] grant will help UNL researcher study sex-related condition[POIS]”

      CHRIS DUNKER Lincoln Journal Star Jun 26, 2019 Updated Jun 27, 2019


Tierney Lorenz
Courtesy photo


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."
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on July 01, 2019, 02:30:16 PM
Orwellian measures, a small step closer to 1984.
Come to Iraq, you can see the link here haha.
But it’s in Arabic!!

;D
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: fernab on July 01, 2019, 02:46:27 PM
Thank you Demo for putting the complete text!!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on July 01, 2019, 02:48:18 PM
Nas, would u mind re-posting *gifs* please in another section?

We’re showing this thread to researchers. Just want to make the joking smaller here, like our “Arabic” link humor.

If u think it’s unfair I’ll move my joking as well.

Thanks!
Demo
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on July 01, 2019, 02:49:34 PM

Thank you Demo for putting the complete text!!


You’re very welcome, fernab!

Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Nas on July 01, 2019, 04:12:55 PM
Nas, would u mind re-posting *gifs* please in another section?

We’re showing this thread to researchers. Just want to make the joking smaller here, like our “Arabic” link humor.

If u think it’s unfair I’ll move my joking as well.

Thanks!
Demo
sure
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on July 01, 2019, 04:15:04 PM
You’re a gentleman-and-a-scholar, Nas!

(Dunno If u heard that expression, it might be old school! ;D )
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Nas on July 01, 2019, 04:18:08 PM
You’re a gentleman-and-a-scholar, Nas!

(Dunno If u heard that expression, it might be old school! ;D )
Google disappoints no one :D
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on July 01, 2019, 04:58:01 PM
;D
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on July 01, 2019, 09:14:01 PM
Nas, feel free to re-post anything Grant-related here @ FB

I only ask that you credit us as the source. Unless you see it elsewhere first. In that case, please inform us, too ;D

Our aim is to help *all* POISers, worldwide, not just our forum members.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Nas on July 02, 2019, 04:52:35 AM
Nas, feel free to re-post anything Grant-related here @ FB

I only ask that you credit us as the source. Unless you see it elsewhere first. In that case, please inform us, too ;D

Our aim is to help *all* POISers, worldwide, not just our forum members.
Ironically there are two POIS groups on FB. One is run by Fernando from Brazil.
I will try my best though.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on July 02, 2019, 08:46:57 AM
Thank you!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on July 02, 2019, 02:16:31 PM
Nas, can you coordinate with Fernando from Brazil?
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Nas on July 02, 2019, 03:47:35 PM
Nas, can you coordinate with Fernando from Brazil?
I'll try. I'm too busy lately doing abseloutly nothing so be patient on me Demo ;D
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on July 02, 2019, 06:54:10 PM
;D
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on July 03, 2019, 03:45:55 AM

THE SCIENCE OF SEX
Porn Didn’t Break Your Penis
By Dr. Nicole Prause, our NORD POIS Co-Investigator
From The Daily Beast

https://www.thedailybeast.com/porn-didnt-break-your-penis-studies-show-no-physiological-link-between-sex-films-and-erectile-dysfunction

Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on July 11, 2019, 07:24:27 PM
From the article posted below:

“Canada announced last month that it’s increasing its spending on sex research to CA$1.4 billion by 2023. It’s the place to be if you’re a sex researcher.”

Should we all move to Canada? ;D
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on July 13, 2019, 11:01:17 AM

(https://media.wired.com/photos/5d26836e9a6762000863be69/master/w_1164,c_limit/Science_spiralprobe325.jpg)

POIS is mentioned in this article.
”How we made our orgasm detector”
Dr. Nicole Prause, our NORD POIS Co-Investigator
https://www.wired.com/story/the-strange-saga-of-the-butt-plug-turned-research-device/
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on July 13, 2019, 08:41:42 PM
Google POIS Alert

Another POIS Alert was in my email yesterday. I’m not bothering to post it, it’s yet another semen allergy POIS explanation article. Looking forward to better POIS publicity in 2019-2020 thanks to NORD’s upcoming major POIS Research Study and excellent publicity efforts by Dr Tierney Lorenz and her co-Investigator Dr Nicole Prause!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Nas on July 19, 2019, 03:05:52 AM

(https://media.wired.com/photos/5d26836e9a6762000863be69/master/w_1164,c_limit/Science_spiralprobe325.jpg)

POIS is mentioned in this article.
”How we made our orgasm detector”
Dr. Nicole Prause, our NORD POIS Co-Investigator
https://www.wired.com/story/the-strange-saga-of-the-butt-plug-turned-research-device/
"direct health problems like postorgasmic illness syndrome, in which men are struck with headaches and fatigue following ejaculation. It might be due to some sort of autoimmune response to ejaculate, or it might have something to do with the number of contractions these men have, which the device can measure."

What? how the heck does that relate to the symptoms we suffer from?
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on July 19, 2019, 12:18:33 PM

(https://media.wired.com/photos/5d26836e9a6762000863be69/master/w_1164,c_limit/Science_spiralprobe325.jpg)

POIS is mentioned in this article.
”How we made our orgasm detector”
Dr. Nicole Prause, our NORD POIS Co-Investigator
https://www.wired.com/story/the-strange-saga-of-the-butt-plug-turned-research-device/
"direct health problems like postorgasmic illness syndrome, in which men are struck with headaches and fatigue following ejaculation. It might be due to some sort of autoimmune response to ejaculate, or it might have something to do with the number of contractions these men have, which the device can measure."

What? how the heck does that relate to the symptoms we suffer from?

Nas, I started to reply to you but then - thinking of wider ramifications to your Q. - decided to pass your question on to both of our NORD researchers, even though they are *unpaid consultants* (I’d like everyone here to be aware of this) at this stage where contracts are still undergoing review, not yet finalized. Therefore, I would like to limit our interactions till we are in full swing.
Thanks everyone,
Demo


“Hi,

Qualities of the climax could relate to POIS symptoms in a number of ways that make them worth measuring. One possibility is that POIS is associated with orgasm qualities that are more intense than typical 8-12 contractions, such as 15-20 contractions. If this were so, this might point us to look at the data from the perspective of some nervous system regulation. Another possibility is that POIS is associated with orgasm qualities that are less intense, such as fewer contractions or less pelvic pressure than is typical. This could reflect an additional symptom of POIS (e.g., orgasm quality may be degraded), but, more likely, some lack of coordination in the systems that generate orgasmic contractions. In either case (more/less contractions/pressure), it helps us know how to understand the other measures (e.g., IL-6) that we are collecting.

The other reason we included the measure was to verify the presence of climax. Our studies are showing it is very common for women to report having had a climax when they actually have no contractions. What if a high proportion of men with POIS also are having that experience? That would be extremely important to know, because then the symptoms are not specific to physical climax, but some process that co-occurs (i.e., with high sexual arousal). I do not think it is likely this would be the case, as we have not seen it in men, but it is important to rule out.

All that said, any participant will be allowed to opt-out of this specific measure, because we realized it may be a barrier to participation for some people who otherwise would participate. We will do all we can to make it comfortable to use, and want participants to be completely comfortable and confident that they want to participate in each part of the study to which they consent.

NP

Nicole Prause, Ph.D.”
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Muon on July 19, 2019, 01:09:53 PM
This is not a question for the researchers but just an observation:

All 3 patients (myself, my brother and Simon66) on this forum tested negative for IL-6. Other inflammatory cytokines  like IL-1b and TNF-alpha also showed normal results.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Nas on July 19, 2019, 01:29:44 PM
Thanks Demo,
I fully understand where they're going with this now, I thought the theory relied on it fundamentally to explain POIS. But now I think if it showed irregularity then perhaps it might help in diagnosing the reason.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on July 19, 2019, 03:49:29 PM
Thanks, Nas.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on July 19, 2019, 09:40:28 PM
This is not a question for the researchers but just an observation:

All 3 patients (myself, my brother and Simon66) on this forum tested negative for IL-6. Other inflammatory cytokines  like IL-1b and TNF-alpha also showed normal results.
Thanks, Muon. Interesting! If you still want to pass along to NORD researchers, please remind me when the POIS Study gets rolling.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on July 21, 2019, 04:33:44 PM
Google POIS Alert
Postorgasmic Illness Syndrome
As-it-happens update   July 21, 2019
NEWS   

NORD Awards Ten New Grants in Eight Disease States for Rare Disease ... endocrine, and immune mediators of post-orgasmic illness syndrome

https://www.newkerala.com/news/read/178508/nord-awards-ten-new-grants-in-eight-disease-states-for-rare-disease-research.html
 
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: BoneBroth on July 23, 2019, 11:58:21 AM
Where are the results of all the main POIS Surveys taken place here. Are they possible to download for me somewhare?
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on July 23, 2019, 01:17:35 PM
This thread is about the upcoming NORD study only.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on July 25, 2019, 09:42:11 PM
Where are the results of all the main POIS Surveys taken place here. Are they possible to download for me somewhare?

Links from our Welcome Page. And more (from 2016). Please ask around for more up to date info.  Can anyone else help post any new links here? Also, the
2018 POIS SURVEY by La_pet1te_Mort (LPM) is shown below!

As you prolly know, a 2019 Tulane survey is now also underway, thanks to Quantum!



Links to POIS Research Studies abstracts (Those articles cannot be accessed in full for free, because of copyright issues) :


http://www.ncbi.nlm.nih.gov/pubmed/11995603

http://www.ncbi.nlm.nih.gov/pubmed/21241453

http://www.ncbi.nlm.nih.gov/pubmed/21241454

http://www.ncbi.nlm.nih.gov/pubmed/25630453

http://onlinelibrary.wiley.com/doi/10.1111/j.1743-6109.2010.01707.x/abstract

Poster Presentation: http://f1000research.com/posters/1758

http://casereports.bmj.com/content/2010/bcr.10.2009.2359.short?rss=1

https://www.researchgate.net/publication/316834619_Post-Orgasmic_Illness_Syndrome_Where_Are_We    ( 2017-07, new article, available in whole, but it is only a short review )

http://www.smr.jsexmed.org/article/S2050-0521(17)30116-6/abstract  ( 2017 Review article by Department of Urology of Tulane University)

https://www.sciencedirect.com/science/article/pii/S2050116118300199 ( Korean case report, 2017-12, full article available for free)

https://www.nature.com/articles/s41443-019-0154-7    ( article published by LPM following the POIS 2018 survey done online, in which many members here have participated) 
full article at :   https://rdcu.be/bFIqy   

Link to Waldinger's latest review article (August 2016) on POIS, Full text - - Quantum: this entire post sent to NORD researchers :

http://tau.amegroups.com/article/view/11107/11778


Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on July 25, 2019, 09:56:52 PM
Keep your fingers crossed. As early as August 2019 could be the start date for our 2019-2020 NORD Study if everything falls in to place!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Nas on July 26, 2019, 03:20:54 PM
The doctors I spoke to have very strong criticism to the auto-immune theory, and are very frustrated that the new research is going to commit time towards this theory that Waldinger unfortunately hypothesized without proof. They believe time is much more well spent testing neurological changes that lead to the many brain symptoms in POIS. Since these are the symptoms harder to treat with POISers.
This is not a criticism of the new investigation though, it's an expression of frustration that I totally understand. Regardless in their belief that POIS is mostly a neurological disease.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on July 26, 2019, 03:29:04 PM
My impression, Nas, is that they’re not very fond of the auto-immune theory either. But since the literature addresses it, they must at least spend *some* time on it. Just my speculation.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Nas on July 26, 2019, 03:31:58 PM
My impression, Nas, is that they’re not very fond of the auto-immune theory either. But since the literature addresses it, they must at least spend *some* time on it. My speculation.
Who? the investigation team?
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on July 26, 2019, 03:32:22 PM
Yes
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Muon on July 26, 2019, 03:38:38 PM
They believe time is much more well spent testing neurological changes that lead to the many brain symptoms in POIS.

What test do they suggest?
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Nas on July 26, 2019, 03:40:34 PM
My impression, Nas, is that they’re not very fond of the auto-immune theory either. But since the literature addresses it, they must at least spend *some* time on it. Just my speculation.
Yeah, the doctors also recognize that. Debunking the most popular hypothesis of POIS is definitely part of investigative work.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Nas on July 26, 2019, 03:42:30 PM

What test do they suggest?
Very specific equipment that you probably not gonna have access to in clinics. I'll ask them about the specific devices if you want though.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Muon on July 26, 2019, 03:48:36 PM

What test do they suggest?
Very specific equipment that you probably not gonna have access to in clinics. I'll ask them about the specific devices if you want though.
Yes why not.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Nas on July 26, 2019, 04:06:24 PM

Yes why not.
So it really depends on where you want to investigate.
For example if you're looking within the dopamenergic pathway, you need a pet/mri, which is hard to get access to.
But if you could, which would probably cost a s*** tone, why not give it a test?!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Muon on July 26, 2019, 04:10:55 PM

Yes why not.
So it really depends on where you want to investigate.
For example if you're looking within the dopamenergic pathway, you need a pet/mri, which is hard to get access to.
But if you could, which would probably cost a s*** tone, why not give it a test?!
Is this coming from yourself or are these words theirs?
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Nas on July 26, 2019, 04:12:46 PM
s this coming from yourself or are these words theirs?
No it's theirs, why?
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Muon on July 26, 2019, 04:19:33 PM
s this coming from yourself or are these words theirs?
No it's theirs, why?
Because you did get that answer very quickly.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Nas on July 26, 2019, 04:21:57 PM
Because you did get that answer very quickly.
What can I say, it's the age of social media.
This test is also useful with other pathways. Basically after selling your liver and kidney, do a complete analysis of different pathways in a POIS state, and see the irregularities.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Muon on July 26, 2019, 04:51:47 PM
Investigation of dopamine pathways is interesting yes. Btw I've send out an email to a laboratory for clinical trials and asked them if I, as a patient, could initiate a project/study. I've received nothing back yet. If this is possible then you will have access to all sorts of exotic parameters. I can put up a kickstarter for raising funds and we can democratically vote for the parameters we want to investigate. I'm just exploring options at the moment. We could launch a study parallel to the NORD one.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Nas on July 26, 2019, 04:53:11 PM
Great Idea, you 100% have my support.
Though please let's focus on brain symptoms. Trust me no one here is going to be suicidal for sneezing after POIS.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on July 26, 2019, 06:20:30 PM

. Trust me no one here is going to be suicidal for sneezing after POIS.


;D ;D
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on July 26, 2019, 08:37:21 PM
Nas, your neurological emphasis is intriguing. I encouraged the NORD researchers to look at this most recent thread, mainly the discussion between you and Muon.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on July 27, 2019, 12:01:16 PM
The doctors I spoke to...
Not trying to break anyone’s anonymity, but can you reveal anything more about these doctors? Mainly because it’s so unusual to find *any* doctor with empathy or understanding of POIS! And research! How did you find them? This is all out of simple curiosity, I’ll understand if you decline to respond. Also, can you say anything about your own educational/occupational background? You seem well versed in some medical understanding. Thank you!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Nas on July 27, 2019, 01:33:35 PM
Yes, so you have:
Dr. Ahmad Maher from Egypt
Medicine student Filip Ali from Syria
Dr. Ibrahim Touami from Algeria
Pharmacist Youcif Bouzegzi from Algeria

Note all these suffer from POIS. But unfortunately they have still no understanding of POIS, just speculations. They also haven't found a remedy for their illness.

I talked to Ahmed Maher by accident since he was very active on FB, he decided to make a group chat for Arab POIS sufferers. It turns out that half of them are involved in medical academics.

The medical knowledge I have comes from my own research. I have no college training so really I'm no different than you. Being isolated from the medical community, because they don't have knowledge about POIS. So I only have my own and the internet to try and fix my issue. Please don't rely on me for medical advise, I'm only cultured in medicine and definitely not an expert, and I always ask these mentioned doctors.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Nas on July 27, 2019, 01:51:40 PM
Hopefully this research can better introduce the medical world to our illness. But the sad truth is probably no way to effectively treat POIS without research.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on July 27, 2019, 02:04:50 PM
Impressive, Nas.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Quantum on July 28, 2019, 08:08:54 PM


”Crowdfunded [from our forum!!] grant will help UNL researcher study sex-related condition [POIS]”


Dr. Tierney Lorenz, our POIS Study Principal Investigator


(http://cb3.unl.edu/wp-content/uploads/2018/08/Lorenz_cropped.jpg)



Journal Star link:

http://tinyurl.com/y48syzo6


In case anyone is wondering, Dr Lorenz si the main researcher of our upcoming POIS study   :)



Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on July 28, 2019, 08:25:33 PM
Impressive, Nas.
One of my biggest hopes for many years was to find an MD with POIS. You did it!

ps - I assume you’re aware of the controversial POIS paper by the Egyptian researchers? (Controversial because Waldinger refused to endorse it for publication in JSM).
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on August 03, 2019, 02:56:16 PM


Dr. Nicole Prause, our POIS Research


Co-investigator, was in a PBS-TV Series


(I like the way she thinks -


Demo)



(https://i.pinimg.com/736x/16/6f/11/166f11557822818422306b6d28cb5ff6.jpg)

(https://image.pbs.org/video-assets/pbs/secret-life-of-scientists/232041/images/mezzanine_632.jpg.focalcrop.1200x630.50.10.jpg)


Her video:

https://tinyurl.com/y4trvo6o
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Nas on August 13, 2019, 02:26:10 PM
Any news on this investigation? Did it start? When will it start?
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on August 13, 2019, 02:53:51 PM
Almost there. Waiting on fund transfers. No formal ETA. Frustrating but very typical of the process!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: OpiesDad on August 14, 2019, 07:13:22 PM
Will be worth the wait ...  I will eagerly participate, even if it means O'ing myself sick!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on August 14, 2019, 08:39:51 PM
OpiesDad, thanks for your support for the research!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on September 03, 2019, 08:42:24 PM
Dr. Nicole Prause, NORD’s co-Investigator for POIS Research.

About porn vs. sex:
https://smartsexsmartlove.com/2019/09/03/how-porn-and-sex-are-different-in-the-brain/
Click on Episode Transcript
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on September 06, 2019, 12:51:51 PM
NORD signed the contract for the science to start, so now the researchers are just waiting on the first money to be deposited to order equipment for the POIS study.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on September 17, 2019, 10:08:27 AM
Dr. Nicole Prause, NORD’s POIS co-investigator:

This is not about POIS but this might give you better insight as to how one of our POIS researchers thinks:

“We are lucky that sex science is easy comedy fodder, because it means I get to communicate science with a group of  awesome comedians who also whipped in good questions! From orgasms and one-time partners to pornography and sexual excitation/inhibition balance...Moshe Kasher and Hound Tall”

https://podcasts.apple.com/us/podcast/orgasms-genital-stroking-and-sexaddiction/id924570412?i=1000449298505
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on September 23, 2019, 07:19:43 PM
I thought some of you might be interested in seeing this job posting since it relates to the progress of the POIS Research Study that we are funding at POISCenter.com with NORD.

Research Assistant Job
We are hiring a part-time research assistant for a study of post-orgasmic illness syndrome in Santa Monica, CA. This position is funded by the National Organization of Rare Diseases (NORD). The study is overseen by the University of Nebraska-Lincoln federal ethics IRB.

All candidates should anticipate being comfortable researching sexual topics, including discussing genital measures with study participants and showing erotic imagery and films. Experience with psychophysiology is required. Experience with electroencephalography is especially useful. The candidate is likely enrolled in a PhD program. Advanced undergraduates, especially in computer science, will be considered. Experience with PsychoPy, R, Matlab, Emotiv or computer science is desirable, but not required. Opportunities for participation in publications exist dependent on ability to contribute to writing. Work can be done on weekends-only, if desired.

We do not discriminate on the basis of, well, anything. We are open to candidates across gender identities, sexual orientations, ages, disability statuses, family statuses, religions, political orientations…if you are qualified, we want you.

Application
[Brief] Cover letter, including the position(s) for which you are applying, and a curriculum vitae (or resume). Select “Job Applicant” on this form to provide that information. You should receive a confirmation email of receipt.

Salary
Salary expected: $11,000 total

Effort
8 hours per week for one year ($26.44/hour). Schedule largely to your preference/availability.
This is 20% effort on the grant, if you need to ensure other grants do not conflict

Start
Flexible around November
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on October 01, 2019, 08:28:12 PM
Some people (but very few) here wonder why we don’t just crowdfund donation$ and then hire our own POIS researcher instead of using an intermediary like NORD? One answer is that NORD does all the accounting/bookkeeping/$$$ fundraising donor collection, organization and disbursement of funds, a mini-nightmare for a small group like ours. Then they do massive promotion to a huge international database and PR network to screen for and find medically-qualified-for-POIS researchers. Then, lending great CREDIBILITY to the process (for donors & researchers alike) with a very well-known and highly respected name in the field of medical research of rare disorders, e.g., NORD.

And to me, one of the most critical factors is having an “oversight” team like NORD’s MAC (see below), virtually impossible to assemble all alone by a small group such as ours.

:) MAC FAQ :)

Q. Who evaluates all of the POIS Grant proposals for NORD (our Grant administrator) and who does the final award/selection of our Researcher/PI (Principal Investigator)? And who monitors POIS research progress & sends us periodic updates?

A. NORD's Scientific and Medical Advisory Committee (also known as "MAC") -- does all of the above.

The NORD MAC ( Medical Advisory Committee ) is comprised of physician/researchers who share their experience and expertise on behalf of patients and families affected by POIS. They are:


Marshall Summar, MD, Chair, NORD Strategic Advisory Committee
Division Chief, Genetics and Metabolism
Margaret O’Malley Chair of Molecular Genetics
Children’s National Medical Center
Professor, Pediatrics, George Washington
University School of Medicine and Health Sciences

Frederick Askari, MD, PhD
Associate Professor, Hepatology
Division of Gastroenterology
Director, Wilson Disease Program
University of Michigan Health System

Matthias Baumgartner, Prof Dr med
Associate Professor for Metabolic Diseases
University of Zurich
Head, Division of Metabolics
Children’s Hospital Zurich

Preston W. Campbell, III, MD
President and Chief Executive Officer
Associate Professor of Pediatrics
Johns Hopkins Cystic Fibrosis Center

Harry (Hal) Dietz, MD
Victor A. McKusick Professor of Genetics
and Medicine
Investigator, Howard Hughes Medical Institute
Johns Hopkins University School of Medicine
McKusick-Nathans Institute of Genetic Medicine

Gregory M. Enns, MB, ChB
Associate Professor of Pediatrics (Genetics)
Lucile Packard Children’s Hospital
Associate Professor – Med Center Line,
Pediatrics – Medical Genetics
Member, Child Health Research Institute
Stanford University School of Medicine

Marlene Haffner, MD, MPH
President and CEO
Haffner Associates, LLC

James E. Heubi, MD
Director, Clinical Translational Research Center
Co-Director, Center for Clinical and Translational Science and Training
Associate Dean, Clinical and Translational Research
Professor, Department of Pediatrics
Cincinnati Children’s Hospital Medical Center

James F. Leckman, MD
Neison Harris Professor of Child Psychiatry
Psychiatry, Psychology and Pediatrics
Yale Child Study Center
Yale School of Medicine

Brendan Lee, MD, PhD
Robert and Janice McNair Endowed Chair and Professor in
Molecular and Human Genetics
Professor of Molecular and Human Genetics
Baylor College of Medicine
Investigator, Howard Hughes Medical Institute

James E. Lock, MD
Cardiologist-in-Chief
Boston Children’s Hospital
Alexander S. Nadas Professor of Pediatrics
Harvard Medical School

Mary Jean Sawey, PhD
VP, Medical Director
Scientific Services
TRIO, an FCB Health Network Company

Susan Winter, MD
Clinical Professor, Pediatrics, UCSF
Clinical Geneticist, Genetic Medicine and Metabolism, Valley Children’s Hospital

Doris T. Zallen, PhD
Professor Emerita of Science and Technology
Studies and Humanities
Virginia Tech University
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on October 25, 2019, 06:47:17 PM
Great Research News!

From:        Dr. Nicole Prause
cc:             Dr. Tierney Lorenz
Subject:    Scientists, start your engines!


Hi Demo,

We officially have the grant funds in the accounts to spend them! I've started prepping my lab space and will begin equipment orders. I now need to hire the research assistant and do a bunch of testing, so do not expect enrollment for at least another month, but we are officially green-lit...totally...finally. :)

Thank you for your patience and have a good weekend!

Nicole Prause, Ph.D.


Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Nas on October 25, 2019, 07:00:40 PM
Demo have you notified the team about the recent paper?
Hopefully it might help them allocate their recourses somewhere more useful.
Thanks you.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on October 25, 2019, 07:17:40 PM
Yes! Thanks, Nas!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on October 25, 2019, 07:19:16 PM
Great Research News!

From:        Dr. Nicole Prause
cc:             Dr. Tierney Lorenz
Subject:    Scientists, start your engines!


Hi Demo,

We officially have the grant funds in the accounts to spend them! I've started prepping my lab space and will begin equipment orders. I now need to hire the research assistant and do a bunch of testing, so do not expect enrollment for at least another month, but we are officially green-lit...totally...finally. :)

Thank you for your patience and have a good weekend!

Nicole Prause, Ph.D.


Yayyyy!


For those of you who are new, Daveman & I  together co-founded POISCenter.com
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on October 25, 2019, 09:38:07 PM

From:          Dr. Tierney Lorenz
cc:               Dr. Nicole Prause
Subject:      Re: Scientists, start your engines!

Thanks Demo and thanks again to the whole community for your continued patience and support!

Cheers,

TKL
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on October 25, 2019, 09:57:24 PM
The first step in our new, major POIS Research is working with Dr. Nicole Prause’s sexual biotechnology company, Liberos LLC, in Los Angeles

http://www.liberoscenter.com/

- - with close direction, co-ordination and follow up with Dr Tierney Lorenz at the University of Nebraska - Lincoln.

My role is Research Intermediary - -  between POISCenter.com and the UNL/Liberos Research Team - - And between POISCenter & NORD. Similar to the last 10 years.
Best POIS-breakthrough wishes to us all!
Demo
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on October 26, 2019, 06:46:46 AM
Please keep in mind: POIS research direction and methodology is strictly between the Research Investigators (Drs. Lorenz & Prause) and NORD’s MAC:

https://tinyurl.com/yxjf8wjo

Contractually, we POISers do *not* have any control over *how* they choose to study POIS. NORD’s medical and scientific objectivity is one big reason we funded them in the first place.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Nas on October 26, 2019, 08:03:41 AM
Do we have the right to be updated on research progress or do we have to wait for the whole thing to finish in order to see the results.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on October 26, 2019, 01:11:42 PM
Regular progress updates from MAC are sent to me, which I will post here. There is a periodic public summary, for us, and a private, much-more-detailed writeup at the same time, the latter strictly for MAC’s confidential, in-depth evaluation of POIS research progress. And our researchers are only paid (progress payments) when pre-established goals (by MAC) are met. A wonderfully rigorous process.

Again, who is MAC?
https://tinyurl.com/yxjf8wjo
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on October 26, 2019, 05:38:58 PM
More re Nas’ Question

From:   Dr Tierney Lorenz
cc:        Dr Nicole Prause

Thank you Demo!

In answer to Nas’ question:  of course the community will be able to see the results of the research when it is completed. In fact, one of the things that we are dedicated to doing is releasing the (completely anonymized) data to a well-documented public database so that other scientists can benefit from this research and potentially come up with new ideas. However, because we are using the forum to recruit participants, it will be important that we not release results to the forum prematurely. We really want to make sure that folks are blinded to our hypotheses and to the directions we see the data taking, because it is a well-known phenomenon in research that as soon as the participant knows the way the experimenters are thinking about the data, they will behave in ways that are in line with those expectations. Unconsciously even, we all want to act in the way that is expected of us. But that would get in the way of having an objective study. We will do our best to keep you all updated on the sorts of things that would not violate that principle, such as how many people have started the study. But as for the results of the actual testing, I’m afraid that we will have to wait until all of the recruitment is completed. I should also take a moment to remind folks that this is a basic science etiology study – that means that we are looking at some possible predictors of the condition, but this is not a treatment study. We are not evaluating an intervention, although of course we hope that our data will help to make clear what kinds of interventions would be helpful (and give future research a leg up in validating possible interventions). We appreciate your understanding and patience- science is a very slow process- but it will move us forward!

Cheers
TKL
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Muon on October 26, 2019, 05:54:45 PM
Since this study has been greenlit, could we start collecting money for a potential follow up study? We could minimize the loss of time by skipping the fundraising inbetween studies.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on October 26, 2019, 06:06:11 PM
Hi, Muon,

At this time (but it could change), NORD will not support our efforts beyond this UNL study.

Also, my hope is that Drs. Tierney & Prause - as they clearly expressed - will help us find a deeper-pocket-than-ours for funding a *larger* follow-up study, e.g., NIH, which has $39 billion a year dedicated to medical research studies!

That can only happen after publication of this current research.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on October 26, 2019, 06:37:19 PM

Congrats on this Demo. And thank you for making this happen!


Animus’ response to my forwarding him the study-greenlighting news from this thread.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on October 26, 2019, 06:40:12 PM
Since this study has been greenlit, could we start collecting money for a potential follow up study? We could minimize the loss of time by skipping the fundraising inbetween studies.
Muon, my apology for the inaccuracy of my earlier reply. It is now corrected (above).
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Muon on October 26, 2019, 07:01:35 PM
Hi, Muon,

At this time (but it could change), NORD will not support our efforts beyond this UNL study.
What is the reason behind this? We can't just repeat the same process with NORD? So this is basically a one-time deal?
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on October 26, 2019, 07:22:43 PM
Long boring story. PM me if you want more info.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Nas on October 27, 2019, 06:19:29 AM
Ok thanks demo.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on October 27, 2019, 09:27:52 AM

Ok thanks Demo.
Welcome.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on October 27, 2019, 02:58:53 PM
As you can see, there are 2 perspectives/answers to Nas’ question: NORD’s & UNL’s
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: CarloFrancesco on November 01, 2019, 04:21:46 AM
Hello, it certainly has been asked before, but do you know whether it would be possible for europeans to take part in the study? When all tests could be done within, let’s say, a weeks timeframe I am seriously considering flying to L.A..

CarloFrancesco
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on November 01, 2019, 07:31:43 AM
Hello, it certainly has been asked before, but do you know whether it would be possible for europeans to take part in the study? When all tests could be done within, let’s say, a weeks timeframe I am seriously considering flying to L.A..

CarloFrancesco

Yes, of course. If you are eligible after some study volunteer screening (which is currently under final development), you are most welcome! And to accommodate your special travel schedule, UNL/Liberos is willing to see you at “off-times”, for example, evenings and/or weekends. Look for their ads and feel free to post questions here.

Best,
Demo
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: CarloFrancesco on November 01, 2019, 12:18:46 PM
Good to know, thx for the information. Now let’s await the recruitment ad.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on November 01, 2019, 01:19:20 PM
I just received some added information from Dr. Lorenz:

POIS Study volunteer recruitment ads will appear here at the forum in about a month.

POIS volunteer testing will be done in Los Angeles. The testing itself takes place over one day, and there is a follow up set of surveys, but those can all be completed online. Testing will be done at Liberos, LLC:
http://www.liberoscenter.com/ 


I will most probably volunteer.
Demo

For more info on the Study:
https://tinyurl.com/y42f7hqe
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Muon on November 01, 2019, 01:58:15 PM
Do they accept poisers that did desenz, like SCIT or ILIT?
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on November 01, 2019, 01:59:58 PM
I have the same question, Muon, with my TRT usage. Let’s wait and see when the screening begins :)
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Muon on November 01, 2019, 02:03:17 PM
Fair enough.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on November 01, 2019, 03:38:13 PM
I just received some added information from Dr. Lorenz:

POIS Study volunteer recruitment ads will appear here at the forum in about a month.

POIS volunteer testing will be done in Los Angeles. The testing itself takes place over one day, and there is a follow up set of surveys, but those can all be completed online. Testing will be done at Liberos, LLC:
http://www.liberoscenter.com/ 


I will most probably volunteer.
Demo

For more info on the Study:
https://tinyurl.com/y42f7hqe

From the co-founder of POISCenter:




Great to see movement! I’m really happy that we're getting down to business!

I'm taking vitamin D daily and there's more sunshine as well. I have little to no POIS for the moment. In the winter it shows up a little bit more, but still not too bad.

Don't know if it's because I'm older, lower testosterone, but the
Vitamin D definitely works
.

Emphasis mine - - Demo


Note: Daveman’s POIS began after a vasectomy reversal. Demo
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on November 01, 2019, 04:18:14 PM
The big question remains....

Why did Daveman become a poiscenter forum lurker? :)


[Because] everything is all under great control! :) :)


Thanks, Daveman!!
;D ;D
Demo
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on November 04, 2019, 03:14:48 AM
(https://psychology.unl.edu/images/faculty/tierney4.jpg)

POISCenter-funded NORD PI (Principal Investigator)
and researcher Dr. Tierney Lorenz
Presentation when Dr Lorenz was
Post-Doctoral Research Fellow at The Kinsey Institute:
https://tinyurl.com/y2c6ryod
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on November 04, 2019, 03:15:29 AM
(https://i.ytimg.com/vi/aK-zBBSqFV4/maxresdefault.jpg)

POISCenter-funded NORD researcher/co-Investigator
Dr. Nicole Prause’s TedX talk on orgasm in 2015:
https://m.youtube.com/watch?v=aK-zBBSqFV4
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on November 12, 2019, 01:26:52 AM

Below correspondence added to this NORD Research

Study thread in addition to Colm’s 28-month tVNS Report

thread.


To our NORD POIS Research Team 11/9/19

Hi Dr. Lorenz,
Hi Dr. Prause,

The forum has done some exploration of the relationship between POIS and vagal dystonia, with some promising but not yet definitive experiments with tVNS devices.

Is there any room for this type of inclusion or consideration  in your current study?

Best regards,
Demo



Hi Demo;

Yes, we have taken vagal contributions into account.

Cheers
Dr L
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on November 26, 2019, 03:36:47 AM
”What does science say in 2019 about the function of male and female orgasm?”



(https://miro.medium.com/max/7200/1*qGNgRO_X4xTmuG4T0V0erg.jpeg)

Dr. Nicole Prause (NORD’s co-Investigator for POISCenter-funded NORD Research 2019-2020) and her thoughts with Medium's Lux Alptrum:
https://elemental.medium.com/good-sex-doesnt-always-mean-an-orgasm-6d99815423a6

Dr. Tierney Lorenz, University of Nebraska at Lincoln is NORD’s POISCenter-funded Research PI (Principal Investigator)
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on November 27, 2019, 01:55:14 PM
(https://alignpodcast.com/wp-content/uploads/2018/02/Podcast-2.jpg)

https://alignpodcast.com/podcast/dr-nicole-prause-science-orgasm-sex-masturbation-ep-154/



Podcast featuring:
POISCenter-funded NORD’s co-Investigator/researcher Dr. Nicole Prause


(Dr. Tierney Lorenz is POISCenter-funded NORD’s PI (Principal Investigator)
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Muon on November 29, 2019, 07:11:10 AM
Will there be a way to go to the research team nord or pois to perform tests ?
Perhaps Demo can answer this one, he knows more.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on November 29, 2019, 02:07:18 PM
Will there be a way to go to the research team nord or pois to perform tests ?
Perhaps Demo can answer this one, he knows more.

Yes, Elias! We will be doing testing by the POIS Research Team in Los Angeles. Look for the volunteer recruiting ads soon, around December.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on December 01, 2019, 03:01:14 AM
Elias, after re-reading your Q, if you mean the testing you see at this forum, e.g., blood testing for T-levels, vitamin D, etc...no, that can only be done by your private physicians and your own private laboratory.

NORD researchers will be looking for scientific tests to confirm or disprove various POIS hypotheses for *general* scientific inquiry into the nature of POIS.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Eliasjoelrivera on December 01, 2019, 07:05:54 AM
Thanks for your input. Yes, I understand that. Hopefully the research team can make progress on this painful research and we can have quality of life. Do not lose hope.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on December 02, 2019, 12:30:09 AM
Hopefully the research team can make progress on this painful research and we can have quality of life...
Forum members here have bet $35,000 of their own hard-earned money that this POIS progress will happen. I believe it will.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on December 03, 2019, 06:36:37 PM
Look for the volunteer recruiting ads soon, around December.
There may be slight delays due to POIS-study equipment purchases.

Thanks everyone for your patience!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on December 15, 2019, 09:07:35 PM
We will most probably have a status update next week.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Samir on December 17, 2019, 02:09:13 AM
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.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on December 17, 2019, 05:51:14 PM
Thanks, Samir.

We don’t know yet where the ads will be posted here, so I ask that you please keep a lookout for them.

There will be some volunteer screening and if you pass, we’re delighted to have your participation!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Samir on December 17, 2019, 09:41:46 PM
I'll keep my eyes peeled.  Everyone should also check clinicaltrials.gov regularly for any they see (and for any others that may be able to help you).
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on December 19, 2019, 06:15:15 PM

What? how the heck does [the NORD research anal probe] relate to the symptoms we suffer from?


Unnecessarily negative!

They were very gracious with your reply, but now I’m going to be much more careful what I recommend/pass along.

Try some more conciliatory wording next time.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Nas on December 19, 2019, 07:03:15 PM

What? how the heck does [the NORD research anal probe] relate to the symptoms we suffer from?


Unnecessarily negative!

They were very gracious with your reply, but now I’m going to be much more careful what I recommend/pass along.

Try some more conciliatory wording next time.

Yeah you're right. Obviously I'm very frustrated with how POIS is ruining our lives and I want researchers to be as dead accurate as possible. I appreciate their efforts regardless.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on December 19, 2019, 07:10:51 PM
Thanks. Let’s keep the spirit at “appreciated efforts” for now! They are working far beyond “the clock”! They BELIEVE in our pain and want to help!

Thanks again.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on January 03, 2020, 08:45:58 PM

ISHA SLAVIN
POIS Scientific Research Assistant

POISCenter-funded NORD POIS Study

Ms. Slavin will be a research assistant for the National Organization of Rare Disorders (NORD) grant to study Post Orgasmic Illness Syndrome (POIS) with Dr. Lorenz and Dr. Prause. Isha is currently an undergraduate student at the University of California – Los Angeles, studying Psychology. She has worked on psychophysiological research since 2018 and is eager to gain more research experience working with Dr. Prause. Isha is also passionate about mathematics and music as well, and is a certified Audio Engineer at the recording studios of UCLA.


(http://www.liberoscenter.com/wp-content/uploads/2017/04/IshaSlavin_circle.png)
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on January 29, 2020, 10:10:57 PM



Crowdfunded grant will help UNL researcher

     study sex-related condition [POIS]


By Chris Dunker                            Jun 26, 2019



For newcomers and/or for those who haven’t seen last
year’s news article on our self-funded POIS Research Study:

https://tinyurl.com/y48syzo6


Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Clues on January 30, 2020, 03:14:22 AM
The article is blocked in Europe due to GDPR. Can someone post the text?

EDIT: Was able to access it with Opera browser's built-in VPN.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on January 30, 2020, 12:02:16 PM


(https://citizensclimatelobby.org/wp-content/uploads/2013/07/Lincoln-Journal-Star-trans.gif)


“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
(https://psychology.unl.edu/images/faculty/tierney4.jpg)

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
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 01, 2020, 02:54:28 AM
“What Happens to Your Brain When You Have Sex” | Reader's Digest
These chemical changes help regulate and pace sexual activities, according to Dr. Nicole Prause, POIS Research Study Co-Investigator. One of these neurotransmitters is dopamine, which ...
https://www.rd.com/health/wellness/happens-to-brain-when-have-sex/
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Limejuice on February 01, 2020, 03:03:57 AM
I believe it, both ways. A lot goes on in the brain, and I feel like my brain shuts off during sex too :)
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 01, 2020, 10:50:24 AM
Same here, Limejuice!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 02, 2020, 11:10:18 PM
Limejuice, I discussed this with my wife this weekend. I don’t think I scored any points when I said, “my brain shuts down, but yours doesn’t!” ;D
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Limejuice on February 02, 2020, 11:19:05 PM
Haha! See, I feel like that's a compliment too but what do our male neanderthal brains really know...

It's a good thing females are working our on research.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 02, 2020, 11:26:29 PM
;D ;D ;D
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 03, 2020, 07:26:17 PM
I really like Dr. Prause’s background and her focus on the changes orgasm has in our body. As I said before, I suspect the neurotransmitters released in the moments after the orgasm play a significant role in POIS, and probably something is not occurring as it should. The release of a "wrong" neurochemical cascade could result in POIS symptoms.

We should be encouraged for her previous studies and her knowledge about the brain response to orgasm.

Thought it would be worthwhile to re-post Observer’s thoughts at this time!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 10, 2020, 03:04:57 PM
Landmark POIS Los Angeles Scientific Research Study


(http://www.liberoscenter.com/wp-content/uploads/2020/02/Orgasm-makes-you-sick-1.png)

Please visit & explore!

https://tinyurl.com/ttffxz4



Please fill out this  form to help us look at early responders’ data - and to see if you qualify!


The POIS Research Team will recruit until they get enough participants to fill the study - which includes 40 men with POIS.

They will definitely be collecting data from participants for months, until at least September. They will accommodate travelers in coordination with them, such as evening and weekend times.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Investigator on February 10, 2020, 03:40:20 PM
This is amazing news!!!

Does anybody know for how long the experiments are going to run? I want to fly from Europe to LA and participate, really, this is our chance.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 10, 2020, 03:58:40 PM
Wonderful, Investigator!!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 10, 2020, 04:03:25 PM
Will answer your Q shortly, Investigator!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 10, 2020, 04:23:32 PM

This is amazing news!!!
Thank you! From Demo, the POISCenter Admin/Mod Team & The POIS Researchers!


Does anybody know for how long the experiments are going to run? I want to fly from Europe to LA and participate, really, this is our chance.

Investigator,
The test session itself should only be 2 hours. There is a one-week followup, but it is all online. 
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Investigator on February 10, 2020, 04:32:54 PM
I meant, do you know until when one can participate? I am trying to figure out when my earliest possibility to fly to LA would be. 
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 10, 2020, 04:51:57 PM
Hi, Investigator. I revised the ad notation above: the study will be done through September, and we will do everything possible to accommodate your travel schedule & availability! If you wish, PM me with any special request.
Best
Demo
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Investigator on February 10, 2020, 05:30:11 PM
Thanks so much, Demo! I've already started looking at flights and will pm you once I am ready to make the specific plan.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 10, 2020, 05:37:15 PM
Wonderful, Investigator!!!!

This is POIS Science History In The Making!!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 10, 2020, 05:42:52 PM

Wow, exciting [POIS Study news]!  Thank you Demo. I will check it out soon in more depth.
have a great week,
Animus

Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 10, 2020, 06:13:25 PM
Thanks so much, Demo! I've already started looking at flights and will pm you once I am ready to make the specific plan.
Investigator, please make sure you qualify before booking flights!

You can do that right now:)
https://tinyurl.com/ttffxz4


Many thanks!
Demo
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: CarloFrancesco on February 11, 2020, 12:21:34 PM
Hm, altough I have classical POIS symptoms, I do unfortunately not qualify. I don’t know anything about study design(a potential candidate probably shouldn’t) but has this something to do with the fact that I do not have any prior injuries(hard facts) which could correlate with(cause) POIS. ??? Or is there preference for Americans because of the language barrier or legal reasons? Maybe I should redo the questionnaire with a vpn.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Investigator on February 11, 2020, 12:36:56 PM
"When you have an orgasm, do you have any of these symptoms start right away, last at least 2 days, and happen with every orgasm?"

I think this is clearly meant to ask if you have POIS symptoms. However, technically speaking, the symptoms don't really "start right away" in most of us. For me, they usually appear within 24 hours. Yes, occasionally they do start away, but then this would not be the case "with every orgasm." Waldinger described POIS in terms of symptoms starting a few hours following an orgasm, not "right away."

I really think "right away" should mean "within several hours and up to a day" here. In the last POIS survey that we were filling out, the questions meant to identify if the participant has POIS or not was worded more in line with the language of Waldinger and were streamlined at POIS more directly.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 11, 2020, 07:03:52 PM
Hm, altough I have classical POIS symptoms, I do unfortunately not qualify. I don’t know anything about study design(a potential candidate probably shouldn’t) but has this something to do with the fact that I do not have any prior injuries(hard facts) which could correlate with(cause) POIS. ??? Or is there preference for Americans because of the language barrier or legal reasons? Maybe I should redo the questionnaire with a vpn.
We do not screen out anyone based on their location. Please do not fill out the survey again, as we will report you as two people not qualifying for the same reason, if we do not catch the duplication.

Medical history definitely can disqualify someone from participating. Even if that ultimately caused POIS for that individual, we are trying to recruit a group as homogenous as reasonable for this first study. This way we can help the most people who have the most common presentations of POIS.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: CarloFrancesco on February 12, 2020, 12:58:08 AM
Noted, I won’t redo it. But I was thinking that I have classical POIS symptoms. All of them mentioned in the questionnaire minus the influenza like feeling and feaver. But of course other background infos do matter.

Regards
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Investigator on February 12, 2020, 01:47:33 AM
Oooooops, good call, Demo, I have to tell you that I had filled it out 3 times and only now did I read your comment that one should not redo it.

First time I did it, yes, I qualified, then I got to the page that says how to book an appointment for a short 10-minute phone talk. But I didn't write down this number. Then afterwards I was trying hard to find the number, checked the lab webpage and all of that, but couldn't find it. So, I redid the survey but since I knew I qualified, I was just skipping to the last page, without answering some questions. Then it said "No, you don't qualify." Third time I filled it out carefully, as in the first time, so I got to the last page with the phone number that I have to call. Now I have this number written down.

I hope that now as you know about the triple submission on my side, it won't create a mess.

Speaking of making the phone appointment, I called this number several times, but it was voice mail, asking me for my contact info. But I don't want to be called while I am in the office and other people could hear. Should I leave my contact info to this voicemail or just keep trying to call again?
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 12, 2020, 10:25:22 AM
"When you have an orgasm, do you have any of these symptoms start right away, last at least 2 days, and happen with every orgasm?"

I think this is clearly meant to ask if you have POIS symptoms. However, technically speaking, the symptoms don't really "start right away" in most of us. For me, they usually appear within 24 hours. Yes, occasionally they do start away, but then this would not be the case "with every orgasm." Waldinger described POIS in terms of symptoms starting a few hours following an orgasm, not "right away."

I really think "right away" should mean "within several hours and up to a day" here. In the last POIS survey that we were filling out, the questions meant to identify if the participant has POIS or not was worded more in line with the language of Waldinger and were streamlined at POIS more directly.

Investigator, it’s a good point, and as you noted, the researchers aren’t trying to exclude people whose symptoms start shortly after, but maybe not immediately after, orgasm.

Dr. Prause and Dr. Lorenz will discuss.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 12, 2020, 12:30:53 PM

Speaking of making the phone appointment, I called this number several times, but it was voice mail, asking me for my contact info. But I don't want to be called while I am in the office and other people could hear. Should I leave my contact info to this voicemail or just keep trying to call again?



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.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 12, 2020, 12:47:10 PM
Noted, I won’t redo it. But I was thinking that I have classical POIS symptoms. All of them mentioned in the questionnaire minus the influenza like feeling and feaver. But of course other background infos do matter.

Regards

Thanks for understanding!

CarloFrancesco, for what it’s worth,
I was also disqualified!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 12, 2020, 02:00:53 PM
"When you have an orgasm, do you have any of these symptoms start right away, last at least 2 days, and happen with every orgasm?"

I think this is clearly meant to ask if you have POIS symptoms. However, technically speaking, the symptoms don't really "start right away" in most of us. For me, they usually appear within 24 hours. Yes, occasionally they do start away, but then this would not be the case "with every orgasm." Waldinger described POIS in terms of symptoms starting a few hours following an orgasm, not "right away."

I really think "right away" should mean "within several hours and up to a day" here. In the last POIS survey that we were filling out, the questions meant to identify if the participant has POIS or not was worded more in line with the language of Waldinger and were streamlined at POIS more directly.

Investigator, it’s a good point, and as you noted, the researchers aren’t trying to exclude people whose symptoms start shortly after, but maybe not immediately after, orgasm.

Dr. Prause and Dr. Lorenz will discuss.


The POIS Researchers have added a clarification to the online questionnaire:

" start right away (that is, shortly after, with symptoms starting no later than 24 hours after orgasm) "

Thanks, Investigator!
Demo
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 12, 2020, 03:54:11 PM




(http://www.liberoscenter.com/wp-content/uploads/2020/02/Orgasm-makes-you-sick-1.png)

Please visit & explore!

https://tinyurl.com/ttffxz4



Please fill out this  form to help us look at early responders’ data - and to see if you qualify!


They will recruit until they get enough participants to fill the study - which includes 40 men with POIS.

They will definitely be collecting data from participants for months, until at least September. They will accommodate travelers in coordination with them, such as evening and weekend times.

Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Investigator on February 13, 2020, 02:16:29 AM

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!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Spartak on February 13, 2020, 08:19:40 AM
So sad that many of us can not afford to participate.
But I am crossing fingers for the best results.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 13, 2020, 08:35:02 AM
Thank you, Spartak! Very nice sentiment you express!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 13, 2020, 08:13:52 PM

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.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Mushnikk on February 14, 2020, 03:08:33 AM

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.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 14, 2020, 01:04:51 PM
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.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 14, 2020, 03:19:36 PM

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
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 15, 2020, 02:19:53 PM
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
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 16, 2020, 03:10:38 PM
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!!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Samir on February 16, 2020, 05:39:48 PM
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. :)
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 18, 2020, 03:35:10 PM
POIS VOLUNTEERS: More about the POIS Grant that we funded...


(https://citizensclimatelobby.org/wp-content/uploads/2013/07/Lincoln-Journal-Star-trans.gif)


“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
(https://psychology.unl.edu/images/faculty/tierney4.jpg)

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



(https://i.ytimg.com/vi/aK-zBBSqFV4/maxresdefault.jpg)

POISCenter-funded NORD researcher/co-Investigator
Dr. Nicole Prause’s TedX talk on orgasm:
https://m.youtube.com/watch?v=aK-zBBSqFV4
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: hurray on February 18, 2020, 03:55:05 PM
Great article Demo!

Hopefully we are heading towards a breakthrough  :)
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 18, 2020, 04:00:25 PM
Thanks, hurray, I feel strongly - like never before - that we are!!
Best wishes,
Demo
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Samir on February 19, 2020, 04:51:12 AM
This is really great. :)  Man, it will be so cool if I get to share what I know as part of the research study.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 19, 2020, 10:55:37 AM
Samir, I hope so!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Samir on February 19, 2020, 08:01:48 PM
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. :)
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 20, 2020, 01:37:20 AM

I qualify. :) 


Wonderful, Samir!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 20, 2020, 01:42:43 AM
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!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Samir on February 20, 2020, 03:04:43 AM
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. :)
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 20, 2020, 08:44:43 AM

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!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Clues on February 21, 2020, 04:11:12 PM
I'm not able to participate in the study, but I'd like to thank everyone who's able to attend! Good luck everyone.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Investigator on February 23, 2020, 05:49:03 PM
I had the chance to talk briefly one on one with a neuroscience professor and find it important to share here one of the things he said. I explained him about POIS and about the upcoming study. Here is an extraction of what he said:

1) A lot of his research is funded by the National Institute of Health (NIH), even though it is not directly related to health - it is really "basic science". It could have potential implications to health at some point in the future, but these are not direct or immediate. To put it differently, NIH can be very generous.

2) NIH is pretty conservative, though, and would most likely not fund POIS studies at the current stage. He says that what is known about POIS as of now would not be sufficient at the moment to make a good proposal for NIH funding. Basically, he said that a crowdfunded study is by far the best bet for us, given the current stage of POIS research. So yes, we are doing the (only) right thing.

3) HOWEVER, and this is most important, ***IF*** the upcoming POIS study finds some marker (could be autonomic, immune, or endocrine - whatever marker) that is different in us than it is in the control group, then NIH, he believes (based on his experience) would be interested to fund further studies. It is sufficient for the research team to be able to "sniff" something that could be wrong in us, and then it would be possible to make a case for further NIH funding.

To put 2 and 3 differently: NIH would not pay just on the basis of us saying they have brain fog after orgasm; however, if the LA study finds, say, that we all have low/high [...something...] or some weird physiological neurological response to orgasm, then his guess is that it would be much easier to obtain further funding from NIH. And he said that on our own, everyone just doing lab tests that he finds appropriate, it is quite unlikely that we hit such a marker. He was also impressed that a study has been designed on such a small budget, this is really remarkable and we all appreciate it.

His words sounded pretty encouraging to me. 
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 23, 2020, 07:34:40 PM
Investigator, you are a mind reader!

This is *exactly* where we are headed! NIH is spending $41.46 billion in 2020 on medical research. And once we’ve published the current study, our hope is to get funded by NIH!

And the current researchers are totally committed to help us get as far along as possible on this path TO A CURE.

Thank you greatly for your post!!
Demo
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 23, 2020, 07:54:07 PM

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


Many thanks, Clues!!
Demo
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: hurray on February 24, 2020, 07:03:58 AM
I had the chance to talk briefly one on one with a neuroscience professor and find it important to share here one of the things he said. I explained him about POIS and about the upcoming study. Here is an extraction of what he said:

1) A lot of his research is funded by the National Institute of Health (NIH), even though it is not directly related to health - it is really "basic science". It could have potential implications to health at some point in the future, but these are not direct or immediate. To put it differently, NIH can be very generous.

2) NIH is pretty conservative, though, and would most likely not fund POIS studies at the current stage. He says that what is known about POIS as of now would not be sufficient at the moment to make a good proposal for NIH funding. Basically, he said that a crowdfunded study is by far the best bet for us, given the current stage of POIS research. So yes, we are doing the (only) right thing.

3) HOWEVER, and this is most important, ***IF*** the upcoming POIS study finds some marker (could be autonomic, immune, or endocrine - whatever marker) that is different in us than it is in the control group, then NIH, he believes (based on his experience) would be interested to fund further studies. It is sufficient for the research team to be able to "sniff" something that could be wrong in us, and then it would be possible to make a case for further NIH funding.

To put 2 and 3 differently: NIH would not pay just on the basis of us saying they have brain fog after orgasm; however, if the LA study finds, say, that we all have low/high [...something...] or some weird physiological neurological response to orgasm, then his guess is that it would be much easier to obtain further funding from NIH. And he said that on our own, everyone just doing lab tests that he finds appropriate, it is quite unlikely that we hit such a marker. He was also impressed that a study has been designed on such a small budget, this is really remarkable and we all appreciate it.

His words sounded pretty encouraging to me.

Very interesting, thank you for sharing the professor's insights into funding.

His comment on us needing to find a marker is very insightful. The fact that we cannot "prove" we are in POIS other than by describing our symptoms has been holding us back for many years. A test for POIS would be a huge breakthrough.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 24, 2020, 08:07:15 AM


Very interesting, [Investigator],  thank you for sharing the professor's insights into funding.

His comment on us needing to find a marker is very insightful. The fact that we cannot "prove" we are in POIS other than by describing our symptoms has been holding us back for many years.

A test for POIS would be a huge breakthrough.

emphasis mine - - Demo


Good morning to you, hurray, and thank you very much for that truly insightful remark. I think we are finally on the verge of:

TRUE SCIENCE for POIS!

Best regards,
Demo


Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 24, 2020, 05:13:32 PM
TO EVERYONE CONSIDERING VOLUNTEERING FOR THE POIS STUDY
please take the survey

https://tinyurl.com/ttffxz4   

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.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 24, 2020, 05:19:38 PM
The opening message to the survey link:
( https://tinyurl.com/ttffxz4 )

Thank you for your interest in our study. This study is focused on understanding what causes post-orgasmic illness syndrome (POIS). POIS is thought to affect men.

We are mainly seeking volunteers who are experiencing POIS, but we also need some men who are not experiencing POIS.
 
If you qualify, the study would require you attending one private session at the laboratory in west Los Angeles at a time convenient for you. The session will start with reviewing the study so you can provide Informed Consent to participate. During that session, we will ask you to answer surveys, including questions about your personal mental health and sexual experiences. Then, we will ask you to provide saliva ("spit") and blood (finger prick) samples. Next, we will ask you to complete short computer tests while we record your brain responses. These tests involve looking at emotional pictures, including images that show sexual intercourse, as well as tests of your memory. Then, we will ask you to masturbate to orgasm. You will masturbate in private in a room with no audio or visual recording. During this time, we also will record your genital and other physical responses from a separate room. Responses include butt movement that happens at orgasm using this small instrument. After, we will ask you to complete the same computer tasks again and answer some questions about your experience. Finally, we will pay you in cash. Each day for one week after your laboratory visit, we will ask you to complete a survey on the Internet, for which we also will pay you. Your participation will be confidential.
 
The investigators for this study are Tierney Lorenz, PhD and Nicole Prause, PhD. The study is sponsored by the National Organization of Rare Diseases. The study has been reviewed and approved by the Institutional Review Board (IRB) at the University of Nebraska-Lincoln. If you have any questions about your rights as a research participant, we encourage you to contact the IRB at 402-472-6965 or irb@unl.edu.

Please answer the questions below to see if you qualify for the study. The purpose of these questions is only to test if you are able to volunteer for the laboratory study in Los Angeles. You do not have to answer these questions. Your answers to these questions will be confidential and anonymous. If you choose not to answer these questions, it will not affect your relationship with Liberos LLC or the University of Nebraska-Lincoln. We do not expect that you will receive any direct benefit from answering these questions.

If you qualify for the study based on your answers, we will ask you to schedule a time for a short phone call at a time that is convenient for you.

https://tinyurl.com/ttffxz4


Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: drop247 on February 24, 2020, 08:16:09 PM
Is there the possibility of future follow up testing in the period post-orgasm? I'm concerned that saliva and blood samples are being taken before orgasm and then never again.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 24, 2020, 09:34:58 PM


Is there the possibility of future follow up testing in the period post-orgasm? I'm concerned that saliva and blood samples are being taken before orgasm and then never again.


drop247, of course.

We’re just at “Step 1”.

Scientific baby step.


Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Muon on February 25, 2020, 07:43:30 AM
Articles from Tierney Lorenz (https://scholar.google.com/citations?hl=nl&user=oRm8qGsAAAAJ&view_op=list_works&sortby=pubdate)

Articles from Nicole Prause (https://scholar.google.com/citations?hl=nl&user=yySl87AAAAAJ&view_op=list_works&sortby=pubdate)
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 25, 2020, 04:01:32 PM
Articles from Dr Tierney Lorenz (https://scholar.google.com/citations?hl=nl&user=oRm8qGsAAAAJ&view_op=list_works&sortby=pubdate)

Articles from Dr Nicole Prause (https://scholar.google.com/citations?hl=nl&user=yySl87AAAAAJ&view_op=list_works&sortby=pubdate)

Thanks, Muon, very helpful
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 27, 2020, 10:27:49 PM


POIS Study volunteers - -


The opening message to the survey link:
( https://tinyurl.com/ttffxz4 )

Thank you for your interest in our study. This study is focused on understanding what causes post-orgasmic illness syndrome (POIS). POIS is thought to affect men.

We are mainly seeking volunteers who are experiencing POIS, but we also need some men who are not experiencing POIS.
 
If you qualify, the study would require you attending one private session at the laboratory in west Los Angeles at a time convenient for you. The session will start with reviewing the study so you can provide Informed Consent to participate. During that session, we will ask you to answer surveys, including questions about your personal mental health and sexual experiences. Then, we will ask you to provide saliva ("spit") and blood (finger prick) samples. Next, we will ask you to complete short computer tests while we record your brain responses. These tests involve looking at emotional pictures, including images that show sexual intercourse, as well as tests of your memory. Then, we will ask you to masturbate to orgasm. You will masturbate in private in a room with no audio or visual recording. During this time, we also will record your genital and other physical responses from a separate room. Responses include butt movement that happens at orgasm using this small instrument. After, we will ask you to complete the same computer tasks again and answer some questions about your experience. Finally, we will pay you in cash. Each day for one week after your laboratory visit, we will ask you to complete a survey on the Internet, for which we also will pay you. Your participation will be confidential.
 
The investigators for this study are Tierney Lorenz, PhD and Nicole Prause, PhD. The study is sponsored by the National Organization of Rare Diseases. The study has been reviewed and approved by the Institutional Review Board (IRB) at the University of Nebraska-Lincoln. If you have any questions about your rights as a research participant, we encourage you to contact the IRB at 402-472-6965 or irb@unl.edu.

Please answer the questions below to see if you qualify for the study. The purpose of these questions is only to test if you are able to volunteer for the laboratory study in Los Angeles. You do not have to answer these questions. Your answers to these questions will be confidential and anonymous. If you choose not to answer these questions, it will not affect your relationship with Liberos LLC or the University of Nebraska-Lincoln. We do not expect that you will receive any direct benefit from answering these questions.

If you qualify for the study based on your answers, we will ask you to schedule a time for a short phone call at a time that is convenient for you.

https://tinyurl.com/ttffxz4
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on February 28, 2020, 03:22:12 PM
Interview with our POIS co-investigator/NeuroScientist
Dr Nicole Prause:

5 Myths About Orgasm
https://youtu.be/5oUdoicdz8Y
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on March 11, 2020, 05:20:03 PM
I had the chance to talk briefly one on one with a neuroscience professor and find it important to share here one of the things he said. I explained him about POIS and about the upcoming study. Here is an extraction of what he said:

1) A lot of his research is funded by the National Institute of Health (NIH), even though it is not directly related to health - it is really "basic science". It could have potential implications to health at some point in the future, but these are not direct or immediate. To put it differently, NIH can be very generous.

2) NIH is pretty conservative, though, and would most likely not fund POIS studies at the current stage. He says that what is known about POIS as of now would not be sufficient at the moment to make a good proposal for NIH funding. Basically, he said that a crowdfunded study is by far the best bet for us, given the current stage of POIS research. So yes, we are doing the (only) right thing.

3) HOWEVER, and this is most important, ***IF*** the upcoming POIS study finds some marker (could be autonomic, immune, or endocrine - whatever marker) that is different in us than it is in the control group, then NIH, he believes (based on his experience) would be interested to fund further studies. It is sufficient for the research team to be able to "sniff" something that could be wrong in us, and then it would be possible to make a case for further NIH funding.

To put 2 and 3 differently: NIH would not pay just on the basis of us saying they have brain fog after orgasm; however, if the LA study finds, say, that we all have low/high [...something...] or some weird physiological neurological response to orgasm, then his guess is that it would be much easier to obtain further funding from NIH. And he said that on our own, everyone just doing lab tests that he finds appropriate, it is quite unlikely that we hit such a marker. He was also impressed that a study has been designed on such a small budget, this is really remarkable and we all appreciate it.

His words sounded pretty encouraging to me.

Investigator, you are a mind reader!

This is *exactly* where we are headed! NIH is spending $41.46 billion in 2020 on medical research. And once we’ve published the current study, our hope is to get funded by NIH!

And our current POIS researchers are totally committed to help us get as far along as possible on this path TO A CURE.

Thank you greatly for your post!!
Best,
Demo


Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on March 12, 2020, 06:13:36 PM


PAID POIS STUDY VOLUNTEERS:
See if you qualify! https://tinyurl.com/ttffxz4   

 More about the POIS Scientific Grant that we (POISCenter.com) funded...





(https://citizensclimatelobby.org/wp-content/uploads/2013/07/Lincoln-Journal-Star-trans.gif)


“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
(https://psychology.unl.edu/images/faculty/tierney4.jpg)

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



(https://i.ytimg.com/vi/aK-zBBSqFV4/maxresdefault.jpg)

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


Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on March 14, 2020, 03:59:17 PM

Email from Dr Nicole Prause:

POIS is mentioned on the Adam Conover podcast show around 1:03:00 - including POIS study recruiting:
https://tinyurl.com/tf34l7f


Adam Conover
Today on @Factually podcast, sex scientist @NicoleRPrause [our POIS research co-Investigator] reveals the truth about sex "addiction", debunks common misconceptions about the science of sex, and explains how difficult it is to measure whether or not a test subject has *really* had an orgasm.

Twitter · 1 hour ago



(https://www.earwolf.com/wp-content/uploads/2019/05/image-300x300.png)

Adam Conover is an American comedian, writer, voice actor, and television host. He is the creator and host of the half-hour truTV show Adam Ruins Everything, which is based on the CollegeHumor series of the same name. He is also the host of the American version of The Crystal Maze on Nickelodeon.

Wikipedia

Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on March 16, 2020, 08:45:32 PM
IMPORTANT NOTICE FROM THE POIS STUDY RESEARCHERS
 
“We have just received instructions from the UNL IRB that all in-person research is to be temporarily paused until further notice. Additionally, there is increasing guidance from state governments and CDC authorities to reduce personal contact and delay any non-essential travel. In order to protect both our participants and research staff - and reduce possible interference with our measurements of people’s stress and immune responses – we will be pausing all in-person study sessions for the time being. In the meantime, we will keep the online study screener open and will continue to conduct phone screenings to collect contact information from folks who qualify, in order to schedule later on when we are cleared to resume in-person research. We will keep the POIS community updated as soon as we have any new information. Thanks for your patience – and stay safe out there!”
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on March 22, 2020, 05:29:58 PM
By Mallory Pickett

You won’t find the true address for Dr. Nicole Prause’s [current POIS Study co-Investigator] enterprise, Liberos, on the company website. She has carefully shielded it from the Internet, hoping to protect herself from the barrage of harassment and hate mail that tends to come her way. Some of it comes from anti-porn activists and sex-addiction therapists who are upset with Prause’s research that cast doubt on whether sex and porn addiction are real disorders.

Prause is a neuroscientist by training, but she’s chosen an unpopular specialty in her field. And it’s easy to see why so many scientists and doctors avoid research into sex. Prause recently gave up a research position in the psychiatry department at UCLA—in part because the experiments she proposed seemed to be too titillating for the university. She says that administrators didn’t want any orgasms in the lab, never mind the fact that her research has funding from, among other sources, the National Institutes of Health.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Limejuice on March 22, 2020, 05:44:59 PM
We should be thankful that Dr Prause has made the unpopular and career defining decision to help sufferers like us!  She is a revolutionary in the neuroscience field...
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on March 22, 2020, 06:18:14 PM
Yes!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: devastated on March 25, 2020, 04:04:19 AM
I'm afraid that this coronavirus lockdown will cause an indefinite delay in the progress of this critical research. Well, aren't we unlucky, after waiting for so long...

Let's really hope an antidote is discovered soon.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: ElVelero on March 25, 2020, 11:16:39 AM
Well, first of all, the research give all of us HOPE and I'm really optimist about what could bring to us this study.
Sadly it will be delayed because of the pandemic but after it, advances will be made I think. (Probably around in the second half of the year)

Thanks everyone who makes this possible, as a young man with POIS it gives me hope about not having to deal with this when I marry someone or I have a work!

Best wishes to all the researchers if your are reading this! You are amazing for helping this community that has not being taken seriously in many time!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on March 25, 2020, 05:33:52 PM
ElVero, thank you, I’m sending this to the researchers now! :)
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Ricardo Brasil on March 28, 2020, 04:34:24 AM
Well, first of all, the research give all of us HOPE

I certainly do not interact much, but I am always following the news of the forum and I ALWAYS come in this topic to follow the updates on this research! It represents hope for me too, this syndrome has already hindered my life too much, I really am not the same person I was before adolescence, I remember that I felt happier more easily and that my thinking was much faster than it is today, I feel every day that passes as if I am losing my life.

This year I finish my college, degree in mathematics, but I don't know if I will be able to lead a teaching career due to the cognitive effects of POIS, I am afraid of not being able to organize my thoughts in the classroom.

Relationships, without a chance, since adolescence I already had in mind that I would live alone.

I really wanted to be part of the research as a volunteer, but I am from Brazil and at the moment I am not able to travel, so I am really hoping that through this research they will discover the cause and possibly a cure, it will make a huge difference in the lives of many people.

(I have already contacted Dr. Dr Keity Souza Santos, but unfortunately she cannot help me)
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on April 01, 2020, 01:03:14 AM
Los Angeles POIS study discussion @ reddit

https://www.google.com/amp/s/amp.reddit.com/r/POIS/comments/f2hkzz/new_paid_pois_study_in_los_angeles/
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Limejuice on April 01, 2020, 02:24:17 AM

Los Angeles POIS study discussion @ reddit

https://tinyurl.com/s869zl4



This type of direct communication with the research team is comforting during these uncertain times and creates more transparency.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on April 01, 2020, 05:32:54 PM


Los Angeles POIS study discussion @ reddit

https://tinyurl.com/s869zl4



This type of direct communication with the research team is comforting during these uncertain times and creates more transparency.


Limejuice, I wholeheartedly agree. In spite of the COVID-19 pausing of the study, they are always right there when we have a question. For example, we just chatted 30 minutes ago!

Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Limejuice on April 09, 2020, 01:06:38 PM
I bet our research team is using this 'down time' to fine-tune their thinking and approach to our study.  With researchers so motivated and involved this virus challenge could actually be an opportunity.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on April 09, 2020, 08:20:48 PM
Once again, I agree!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: certainlypois2 on April 10, 2020, 04:47:09 PM
I bet our research team is using this 'down time' to fine-tune their thinking and approach to our study.  With researchers so motivated and involved this virus challenge could actually be an opportunity.
I like that thinking
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on April 10, 2020, 04:52:54 PM
Thanks, CP2, for the positivity!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: drop247 on May 17, 2020, 07:42:15 PM
This is incredible. I can't thank you enough Eric.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Muon on May 17, 2020, 07:52:10 PM
I hope they will include some mast cell mediators.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on May 17, 2020, 08:02:15 PM
VERY EXCITING POIS RESEARCH NEWS!



“Hey Demo,

My name's Eric and I've been a member of the forum for a while now.  I only learned about the UNL study recently and decided to investigate.  After learning of a few deficiencies as a result of limited funding (they weren't going to look into delayed onset symptoms and other autoimmune/inflammatory biomarkers) I decided to get in contact with them to see how much funding they would require to expand their study to cover the things I thought were important.

I asked them to give me numbers for how much they would need for the basic additions I requested along with any other ones they could think of for their "dream" study.  They came back to me with some ideas which I thought were good.

I and my family's foundation have decided to fully fund the "dream" study!  Before I gave them the go ahead, I had asked Quantum if he knew any medical researchers in the forum I could contact.  That's why I'd gotten in touch with him prior.  Thanks again Quantum! 

I also reached out to an autoimmune researcher friend of mine for suggested expansions to the study and she gave me a few that Tierney and Nicole hadn't thought of so those might be added too.

The study will be tracking more inflammatory biomarkers, including delayed onset people, adding research assistants, larger sample size, etc.  I've been asked not to share their hypotheses or the study proposal so I can't share those details.  Suffice it to say, the study should be more comprehensive than before and hopeful allow for some real progress.

I'm personally deeply motivated to increase visibility and research for POIS (since it's taken away a lot of joy from my life).  This study seems like a great start.

Thanks for all your hard work organizing this study!  The funding is almost the easy part, I think what you did was incredible.  Hope you keep up your good work!

Thanks,
Eric”

Thank you, Eric!
Best wishes!
Demo
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Limejuice on May 17, 2020, 11:29:57 PM
That's incredibly generous and exciting Eric! We are extremely lucky to have your support!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Clues on May 18, 2020, 03:16:49 AM

I [Eric] and my family's foundation have decided to fully fund the "dream" study!


This blew my mind. Eric, thank you so much from the bottom of my heart.

I share Muons hope that they'll look at mast cell activation as part of the study.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: hurray on May 18, 2020, 02:27:53 PM
What amazing news! Thank you Eric  :)
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Hopeoneday on May 18, 2020, 04:13:38 PM
This is briliant , a POISer’s dream,
win a lottery and then fund POIS research.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on May 18, 2020, 04:16:21 PM
Thanks for posting, HOD
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: certainlypois2 on May 19, 2020, 02:47:33 AM
THANKS ERIC
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on May 19, 2020, 07:56:32 AM

THANKS ERIC


certainlypois2 [POISCenter Moderator], thank you for posting!

Best wishes,
Demo
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on May 19, 2020, 08:04:18 AM


Wow, excellent. Something we/you, have looked for for a long time!


Daveman [my POISCenter co-founder], thank you for your email!

Best wishes as always!
Demo
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on May 19, 2020, 08:09:53 AM

ERIC is King!

Anonymous POISCenter Donor, thank you for your text message!
Best wishes as always!
Demo
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on May 19, 2020, 09:34:02 AM


That's incredibly generous and exciting Eric! We are extremely lucky to have your support!



Limejuice, I most enthusiastically second your motion!!

Million Thanks for your yearslong support!
Best wishes as always,
Demo
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on May 19, 2020, 09:41:29 AM


This is incredible. I can't thank you enough Eric.


drop247, I’m sure you speak for many, many POISers!

I’ve already heard similar reactions from some POISers privately.

Thank you!!
Demo
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on May 19, 2020, 09:43:40 AM


I [Eric] and my family's foundation have decided to fully fund the "dream" study!


This blew my mind. Eric, thank you so much from the bottom of my heart.

I share Muon’s hope that they'll look at mast cell activation as part of the study.

Clues, thank you for posting!

Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on May 19, 2020, 09:47:03 AM


What amazing news! Thank you Eric  :)


hurray, thanks for posting!

Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on May 20, 2020, 02:48:29 PM
VERY EXCITING POIS RESEARCH NEWS!

I [Eric] and my family's foundation have decided to fully fund the "dream" [POIS] study! 



Superb news!!!


Thank you, Observer!!! [Observer = POISCenter Moderator]
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on May 20, 2020, 10:31:40 PM
Dr. Nicole Prause today:

“My laboratory study with Dr. Tierney Lorenz funded by the National Organization for Rare Diseases [through donor contributions @ POISCenter.com] on post-orgasmic illness syndrome is obviously on hold for COVID-19.”
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Spartak on May 22, 2020, 07:01:49 PM
Dr. Nicole Prause today:

“My laboratory study with Dr. Tierney Lorenz funded by the National Organization for Rare Diseases [through donor contributions @ POISCenter.com] on post-orgasmic illness syndrome is obviously on hold for COVID-19.”
Hello Demo,
I am curious if there enough POIS volunteers who already have confirmed that they can participate in the study?
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Candide on May 23, 2020, 05:41:13 AM
ERICCCCCC, THANKKSSSSSS !!!!!!!  8) 8) 8) 8)
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on May 23, 2020, 01:56:33 PM
Dr. Nicole Prause today:

“My laboratory study with Dr. Tierney Lorenz funded by the National Organization for Rare Diseases [through donor contributions @ POISCenter.com] on post-orgasmic illness syndrome is obviously on hold for COVID-19.”
Hello Demo,
I am curious if there enough POIS volunteers who already have confirmed that they can participate in the study?

Spartak, not enough yet. Because of COVID-19 restrictions, in-laboratory volunteer commitments have been paused.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on May 23, 2020, 02:01:05 PM

ERICCCCCC, THANKKSSSSSS !!!!!!! 

8) 8) 8) 8)


Candide, thanks for posting!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Muon on May 23, 2020, 02:29:16 PM
What amount of extra funding was added if I may ask? Thanks Eric for pouring money into the study.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on May 23, 2020, 06:33:15 PM
Confidential.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on May 24, 2020, 06:25:11 PM
Cross-posted


...we recently got great news: The [POIS] Research Study is expanding in scope.


(https://miro.medium.com/max/2966/1*9MGamwxlD_Ok6NMSj54p0w.png)

https://tinyurl.com/y85suu2p

Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: joelawerence on May 25, 2020, 04:31:43 AM
Great stuff, Eric. Highly appreciated  :)
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on May 28, 2020, 07:24:56 PM
Cross-posted



Thank you, it’s been a long long life struggle. And I’m still hoping for research to discover how to treat myself without becoming a groggy mess :)

We have both put a lot of time and energy into beating POIS. The new research into POIS is exciting, and I really hope they can find a treatment for everybody.


hurray, thank you! Your enthusiasm for the current POIS research program is hugely appreciated!


Whatever the outcome, it’s guaranteed to put us on the medical map.

It means far more serious visibility of POIS in the medical community, and an easier entry into the world of large scale medical research such as NIH, which funds billions of dollars into scientific inquiry of medical disorders.

And our research team is committed to getting us there!

Without this important first step, our chances of POIS treatment success would be extremely limited. Simply said, we desperately need outside professional help, which we’re finally getting!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on May 31, 2020, 04:30:08 PM
VERY EXCITING POIS RESEARCH NEWS!

"I [Eric] and my family's foundation have decided to fully fund the "dream" [POIS] study!"

https://tinyurl.com/y85suu2p



Great stuff, Eric. Highly appreciated(https://upload.wikimedia.org/wikipedia/commons/thumb/e/e0/SNice.svg/1200px-SNice.svg.png)



joelawerence, thank you for posting!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on June 01, 2020, 03:40:43 PM
VERY EXCITING POIS RESEARCH NEWS!

I [Eric] and my family's foundation have decided to fully fund the "dream" [POIS] study! 




Hi Demo,
Thank you so much for keeping me in the loop.
This is Wonderful news!!  Many many thanks to Eric and his Family for funding more comprehensive research. It's amazing that they will do their "dream" project. And I'm excited for the researchers to have that opportunity...
This will most surely advance the scientific investigation into POIS. In a major way.
Congratulations for keeping up the good fight, keeping people connected, and managing the forum. Many many thanks.
Please keep me in the loop. Thank you,
Animus.



Thank you, Animus!!

[Animus is POIS-free since his elective radical surgery 10 years ago
https://poiscenter.com/forums/index.php?topic=3004.0 ]
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on June 05, 2020, 01:28:52 AM

Dr. Tierney Lorenz, University of Nebraska - Lincoln (UNL)

POIS Scientific Researcher
(https://psychology.unl.edu/images/faculty/tierney4.jpg)

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



Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Aladin on June 05, 2020, 06:30:20 AM
Any news on when the study will resume?
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on June 05, 2020, 12:12:53 PM
Any news on when the study will resume?
I will ask the POIS Research Team. Thank you, Aladin!

Demo;
 
Good question, and one we don’t have a great answer for. We were waiting for things to settle down following COVID, and now we are also waiting out the series of protests across LA (as I am sure you are aware). We will apprise you as soon as we are able to confirm that it is safe (and considering the curfews, legal) for participants to come to the lab again.
 
TKL
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on June 05, 2020, 11:37:03 PM
Dr. Nicole Prause, Founder, Liberos, LLC

POIS Scientific Researcher
(https://i.ytimg.com/vi/aK-zBBSqFV4/maxresdefault.jpg)

POISCenter-funded NORD researcher/co-Investigator
Dr. Nicole Prause’s TedX talk on orgasm:
https://m.youtube.com/watch?v=aK-zBBSqFV4
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Observer on June 06, 2020, 07:19:06 PM
Well, again Eric, many thanks for what you have done and the positive consequences we are witnessing about it right now. You're a real hero!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on June 06, 2020, 07:27:01 PM
VERY EXCITING POIS RESEARCH NEWS!

"I [Eric] and my family's foundation have decided to fully fund the "dream" [POIS] study!"

https://tinyurl.com/y85suu2p



Well, again Eric, many thanks for what you have done and the positive consequences we are witnessing about it right now. You're a real hero!



Observer, thank you for posting!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on June 06, 2020, 08:50:43 PM
Qualified POIS volunteers will be tested at:

The POIS Research Laboratory

(https://biz.prlog.org/liberos/logo.jpg)

www.liberoscenter.com
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on June 17, 2020, 12:33:41 PM
POIS Scientific Research Study Co-Investigator Dr. Nicole Prause’s recent discussion with Emily Dinuzzo about what happens in your brain during sex
https://www.thehealthy.com/sex/happens-to-brain-when-have-sex/
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: POISse on June 21, 2020, 12:10:18 AM
I haven't been here in a while and what a good surprise. Not all heroes wear capes... Thank you Eric, your gesture will be remembered.
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on June 21, 2020, 12:49:28 AM
VERY EXCITING POIS RESEARCH NEWS!

"I [Eric] and my family's foundation have decided to fully fund the "dream" [POIS] study!"

https://tinyurl.com/y85suu2p

I haven't been here in a while and what a good surprise. Not all heroes wear capes... Thank you Eric, your gesture will be remembered.


POISse, welcome back!

Thanks for posting!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: tirasoft on June 28, 2020, 02:12:44 PM
Really many thanks for ERIC for his donation , I am sure this will have a great and positive effect overall on the latest NORD research.
I am sure all of the forum members do appreciate this.

THANK YOU
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on June 28, 2020, 10:59:04 PM
VERY EXCITING POIS RESEARCH NEWS!

"I [Eric] and my family's foundation have decided to fully fund the "dream" [POIS] study!"

https://tinyurl.com/y85suu2p

Really many thanks for ERIC for his donation , I am sure this will have a great and positive effect overall on the latest NORD research.
I am sure all of the forum members do appreciate this.

THANK YOU

tirasoft, thank you for posting!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on July 06, 2020, 07:15:19 PM
Our POIS Scientific Research Study Co-Investigator Dr. Nicole Prause’s recent discussion with Emily Dinuzzo about what happens in your brain during sex:

https://tinyurl.com/yaee5lq6
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on July 17, 2020, 12:14:02 PM
Kinsey Institute Research Blog
Exploring sexuality, relationships, and well-being.
The Kinsey Interview Series: A Conversation with Dr. Nicole Prause, POIS Researcher
https://blogs.iu.edu/kinseyinstitute/2020/07/16/the-kinsey-interview-series-a-conversation-with-nicole-prause/


Excerpt:

Lehmiller: Please tell us a bit about one study you’re working on at the moment. For example, what research project are you most excited about right now?

Prause: Dr. Tierney Lorenz and I received a grant [funded by POISCenter.com] from the National Organization of Rare Diseases to study Post Orgasmic Illness Syndrome (POIS), which is thought to primarily affect men. This enabled us to collect blood and saliva biomarkers before and after orgasm, providing the first robust glimpse into the inflammatory effects of physiological orgasm. We hope this not only clarifies the nature of the POIS disorder, but the unaffected, control participants also will provide extremely unique data. I believe this is this first standardized protocol of climax collecting biomarkers of inflammation before and after climax. We also are capturing brain and peripheral physiological measures to further characterize male orgasm. I already have those data in women and expect they might challenge aspects of Masters and Johnson’s “Sexual response model” that has remained largely untested, despite its popularity. There are so many unique pieces of data that will come from this project, we cannot wait to see the results ourselves!
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: drop247 on July 17, 2020, 07:16:13 PM
I believe this is this first standardized protocol of climax collecting biomarkers of inflammation before and after climax. We also are capturing brain and peripheral physiological measures to further characterize male orgasm.

This is fantastic news. The problem we have now is we have no way to quantify POIS scientifically. If they can find some abnormal biomarkers that are associated with POIS then they will be able to quantify it. Once we can quantify it then we can test various treatments and see their effects on said biomarkers. Of course what biomarkers are abnormal will also give great clues about which treatments should be tested first.
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on July 17, 2020, 11:23:23 PM
I believe this is this first standardized protocol of climax collecting biomarkers of inflammation before and after climax. We also are capturing brain and peripheral physiological measures to further characterize male orgasm.

This is fantastic news. The problem we have now is we have no way to quantify POIS scientifically. If they can find some abnormal biomarkers that are associated with POIS then they will be able to quantify it. Once we can quantify it then we can test various treatments and see their effects on said biomarkers. Of course what biomarkers are abnormal will also give great clues about which treatments should be tested first.

Thanks, drop247!

Sent your remarks above to POIS Research Team. They liked/agree with what you wrote.

Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: mellivora on August 18, 2020, 05:45:26 AM
I filled out the  research study online questionnaire. It informed me that I qualify but I didn't see an option to click on 'new client' to arrange the telephone call. I only saw an 'existing client' log in option. Is the option to register as a new client still functional?
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: Journey on August 18, 2020, 09:32:17 AM
When it'll start?
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on August 18, 2020, 04:45:33 PM
I filled out the  research study online questionnaire. It informed me that I qualify but I didn't see an option to click on 'new client' to arrange the telephone call. I only saw an 'existing client' log in option. Is the option to register as a new client still functional?

When it'll start?

From The POIS Research Team:

“Thanks for bringing this to our attention. The study recruitment is still on hold while we wait on our IRB to finalize their approval for the expanded project that was made possible by the family donation. Once that is completed, we have some small administrative details to work out on getting those funds into an account we can access. In the meantime, however, we do want the website to allow folks to register so we can contact them as soon as we are able to start scheduling – so we will look into what’s happening with the scheduling app.”
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: hurray on August 18, 2020, 05:51:05 PM
I filled out the  research study online questionnaire. It informed me that I qualify but I didn't see an option to click on 'new client' to arrange the telephone call. I only saw an 'existing client' log in option. Is the option to register as a new client still functional?

When it'll start?

From The POIS Research Team:

“Thanks for bringing this to our attention. The study recruitment is still on hold while we wait on our IRB to finalize their approval for the expanded project that was made possible by the family donation. Once that is completed, we have some small administrative details to work out on getting those funds into an account we can access. In the meantime, however, we do want the website to allow folks to register so we can contact them as soon as we are able to start scheduling – so we will look into what’s happening with the scheduling app.”

Thanks for the update, Demo.

We all know that scientific research takes time, and it's really exciting to know where we are currently. I looked it up, and discovered that the IRB is the "Institutional Review Board".

https://en.wikipedia.org/wiki/Institutional_review_board

They take care of the ethical implications of scientific research on humans. It's good to know that the research volunteers are being fully looked after  :) I can't wait to see the outcome of this research!
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on August 18, 2020, 06:26:47 PM
Thanks, hurray!

I appreciate your explaining IRB, not everyone knows about it.
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: hurray on August 18, 2020, 06:46:18 PM
Thanks, hurray!

I appreciate your explaining IRB, not everyone knows about it.

I didn't know about it either until you mentioned it  :)

With your knowledge of the POIS Research Team, you know a lot of things that most of us don't, but you always share your knowledge with everybody :)
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on August 18, 2020, 10:15:01 PM
Many thanks, again! :)
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: Clues on August 19, 2020, 09:10:06 AM
Thanks for the update, demo! Exciting to hear that things are progressing despite the pandemic!
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on August 19, 2020, 12:50:37 PM
Clues, thanks for showing support!
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: mellivora on August 21, 2020, 04:26:23 AM
Quote


From The POIS Research Team:

“Thanks for bringing this to our attention. The study recruitment is still on hold while we wait on our IRB to finalize their approval for the expanded project that was made possible by the family donation. Once that is completed, we have some small administrative details to work out on getting those funds into an account we can access. In the meantime, however, we do want the website to allow folks to register so we can contact them as soon as we are able to start scheduling – so we will look into what’s happening with the scheduling app.”

Thanks. It?s great to see this research team is open and communicative where they can be - reassuring and so important for our morale and trust. 
I hope they have a record of my answers to the online questionnaire even if the scheduling app at the end did not work for me. I can re-enter my answers if they do not have them. However, I am in the UK so I don?t know when travel to the U.S. would be feasible in this time of COVID-19. Thanks for everyone?s efforts and for Eric and his family?s further funding.
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on August 29, 2020, 07:25:11 AM
mellivora, thank you, I sent your post above to the POIS Research Team.
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on September 09, 2020, 08:52:32 AM

Drew1312 asked a good question about
2020-2021 POIS Research Study: brain measurement of POISers, so I’m reprinting the POIS Research Team reply below.


“Hi Demo,

There are many ways to measure brain responses. We use electroencephalography, abbreviated EEG. EEG is excellent for monitoring events that happen very quickly in time, whereas fMRI is better for identifying where in the brain events are having an impact. EEG relies on electrical changes, while fMRI relies on changes in blood oxygenation. This means that EEG will pretty much always be better for time and fMRI will pretty much always be better for location. We use EEG because the events surrounding climax are (1) thought to occur very rapidly, and (2) I have a large body of EEG data that is useful/published for comparison.

NP
Dr. Nicole Prause, PhD
Co-investigator
POIS 2020-2021 Research Study”

Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on September 09, 2020, 09:00:13 AM
Dr. Nicole Prause, our 2020-2021 POIS Research Study  Co-Investigator spoke with the Kinsey Institute's Dr. Lehmiller about her path to study sexuality, why sexual response is important in basic theories of emotion, and why you need a broad skill set to play in this space!
https://blogs.iu.edu/kinseyinstitute/2020/07/16/the-kinsey-interview-series-a-conversation-with-nicole-prause/
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on September 09, 2020, 09:09:09 AM
Dr. Nicole Prause’s laboratory study with Dr. Tierney Lorenz funded by the National Organization for Rare Diseases [NORD] on post-orgasmic illness syndrome [POIS] is obviously on hold for COVID-19. HealthLine interviewed a number of lab scientists about how we are dealing with these delays, why the research is important, and how we protect our research participants.
https://www.healthline.com/health-news/covid-19-hurting-research-on-diabetes-cancer-parkinsons-disease
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: hurray on September 09, 2020, 12:15:07 PM

Drew1312 asked a good question about
2020-2021 POIS Research Study: brain measurement of POISers, so I’m reprinting the POIS Research Team reply below.


“Hi Demo,

There are many ways to measure brain responses. We use electroencephalography, abbreviated EEG. EEG is excellent for monitoring events that happen very quickly in time, whereas fMRI is better for identifying where in the brain events are having an impact. EEG relies on electrical changes, while fMRI relies on changes in blood oxygenation. This means that EEG will pretty much always be better for time and fMRI will pretty much always be better for location. We use EEG because the events surrounding climax are (1) thought to occur very rapidly, and (2) I have a large body of EEG data that is useful/published for comparison.

NP
Dr. Nicole Prause, PhD
Co-investigator
POIS 2020-2021 Research Study”

Thanks Demo, it's fascinating to hear what methodologies our scientists are using  :)
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on September 09, 2020, 09:17:19 PM
Thanks, hurray!
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on September 19, 2020, 09:52:34 PM
Dr. Nicole Prause, Founder, Liberos, LLC

POIS Scientific Researcher
(https://i.ytimg.com/vi/aK-zBBSqFV4/maxresdefault.jpg)

POISCenter-funded NORD researcher/co-Investigator
Dr. Nicole Prause on “Good Sex Doesn’t Always Mean an Orgasm“
https://tinyurl.com/sot588g
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on September 21, 2020, 02:25:42 PM
Cross-posted from Drew1312 separate thread/question.

https://clinicaltrials.gov/

If you look for POIS you won't find anything..

Hi, Drew1312,

Good question.

The POIS study is not a clinical trial as our POIS Research Team are not intervening on the illness itself, just measuring the symptoms and what happens in the body around those symptoms. Also, clinicaltrials.gov tends to be for research that is either federally funded (e.g., by the NIH) or for drugs/treatments that are intended to be reviewed by the FDA – not for smaller, independently funded research like ours.
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on September 26, 2020, 02:51:27 PM

POIS Volunteers:

*****   Click here for the link !   ***** (http://www.liberoscenter.com/POIS)
Help make this the best scientific study possible to understand POIS!


Please fill out this  form to see if you qualify!
YOU CAN DISCUSS FUTURE LAB APPOINTMENTS WITH POIS RESEARCHERS - - - NOW
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on September 26, 2020, 02:55:13 PM


Dr. Nicole Prause, Founder, Liberos, LLC

POIS Scientific Researcher
(https://i1.rgstatic.net/ii/profile.image/277196624805892-1443100233616_Q512/Nicole_Prause.jpg)

POISCenter-funded NORD
researcher/co-Investigator
Dr. Nicole Prause
(Dr. Tierney Lorenz, Principal Investigator)

On a new Science Vs. podcast,
discusses orgasm physiology and controversies.

https://gimletmedia.com/shows/science-vs/z3h63vr

Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on September 26, 2020, 10:00:12 PM
[Scholarly Articles from our 2 POIS Scientific Researchers]

Articles from Dr. Tierney Lorenz (https://scholar.google.com/citations?hl=nl&user=oRm8qGsAAAAJ&view_op=list_works&sortby=pubdate)

Articles from Dr. Nicole Prause (https://scholar.google.com/citations?hl=nl&user=yySl87AAAAAJ&view_op=list_works&sortby=pubdate)

Many thanks, Muon!
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: Clues on September 27, 2020, 02:35:01 AM
Demo, do we know what it takes in terms of Covid-19 numbers in order for the study to proceed? When the situation improves, are they depending on a green light from any sort of central authority, medical or otherwise?
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on September 27, 2020, 08:45:35 AM
Clues, it will all be based on Los Angeles city guidelines.
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on September 29, 2020, 01:12:18 PM
Demo, do we know what it takes in terms of Covid-19 numbers in order for the study to proceed? When the situation improves, are they depending on a green light from any sort of central authority, medical or otherwise?
Clues, it will all be based on Los Angeles city guidelines.
Clues, I just heard back from the researchers that adds to my above reply. They are taking into account the situation on the ground in Los Angeles, as well as any guidance they receive from the various groups that provide oversight to the project (e.g., the UNL IRB).
 
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on September 30, 2020, 02:26:51 AM
Demo, do we know what it takes in terms of Covid-19 numbers in order for the study to proceed? When the situation improves, are they depending on a green light from any sort of central authority, medical or otherwise?
Clues, it will all be based on Los Angeles city guidelines.
Clues, I just heard back from the researchers that adds to my above reply. They are taking into account the situation on the ground in Los Angeles, as well as any guidance they receive from the various groups that provide oversight to the project (e.g., the UNL IRB).

The Institutional Review Board (IRB) is an administrative body established to protect the rights and welfare of human research subjects recruited to participate in research activities conducted under the auspices of the institution with which it is affiliated.

In our case, it’s the UNL (University of Nebraska - Lincoln) IRB
Thanks for the update!
:)
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: demografx on October 09, 2020, 09:25:47 PM
Worth repeating...

From Dr. Tierney Lorenz (POIS Study PI [Principal Investigator]) :

“We are glad to be moving the project forward, although I know the pace is frustratingly slow. (Thank you for your continued patience!)

We are hopeful that this study will garner further clinical interest, but also interest from basic scientists who are researching the physiologic mechanisms of arousal and orgasm. Sometimes the most compelling information about basic physiology comes from rare conditions like POIS. One of my mentors on residency described this kind of work as “tracking down what makes the car rattle so you can learn how to build an engine”. This is part of why our study is mechanistic, rather than intervention oriented (at least at this stage) - the more we can show that understanding POIS will help not only POISers but also, well, everyone, the more likely we will be able to convince larger funders like NIH that it is worth pursuing.

Best -
Dr L “

This was in response to my email thanking the researchers greatly for their longterm commitment to curing POIS!

The NIH invests nearly $39.2 billion annually in medical research!!
Demo
Title: Re: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Drew1312 on October 13, 2020, 01:15:07 PM
Worth repeating...

From Dr. Tierney Lorenz (POIS Study PI [Principal Investigator]) :

“We are glad to be moving the project forward, although I know the pace is frustratingly slow. (Thank you for your continued patience!)

We are hopeful that this study will garner further clinical interest, but also interest from basic scientists who are researching the physiologic mechanisms of arousal and orgasm. Sometimes the most compelling information about basic physiology comes from rare conditions like POIS. One of my mentors on residency described this kind of work as “tracking down what makes the car rattle so you can learn how to build an engine”. This is part of why our study is mechanistic, rather than intervention oriented (at least at this stage) - the more we can show that understanding POIS will help not only POISers but also, well, everyone, the more likely we will be able to convince larger funders like NIH that it is worth pursuing.

Best -
Dr L “

This was in response to my email thanking the researchers greatly for their longterm commitment to curing POIS!

The NIH invests nearly $39.2 billion annually in medical research!!
Demo


So,i can understand that is possible after this research is over that they may convince a large funder organisation to fund research for POIS.Ofc, this is a slight chance i guess
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: Aladin on October 14, 2020, 12:33:47 PM
Can you give us an update on the research, demo?
Are the interviews being conducted? Are people being tested?
Or is everything on hold until the covid-crisis is solved?
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on October 14, 2020, 08:09:32 PM
Can you give us an update on the research, demo?
Are the interviews being conducted? Are people being tested?
Or is everything on hold until the covid-crisis is solved?
Demo, do we know what it takes in terms of Covid-19 numbers in order for the study to proceed? When the situation improves, are they depending on a green light from any sort of central authority, medical or otherwise?
Clues, it will all be based on Los Angeles city guidelines.
Clues, I just heard back from the researchers that adds to my above reply. They are taking into account the situation on the ground in Los Angeles, as well as any guidance they receive from the various groups that provide oversight to the project (e.g., the UNL IRB).

I’ve also asked them for an update, will let you know as soon as I do.
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on October 16, 2020, 12:00:05 PM
Aladin, to get more clarification, I sent your question to the researchers with a request for an update. This is their reply:


Demo,

As always we are closely monitoring the situation in LA, and adhering to guidance from both local health authorities and from UNL. In the meantime, we are making sure the LA lab is properly outfitted to deal with the biological safety considerations that COVID creates (e.g., making sure we have proper protective gear). When we can safely move forward with reopening participant recruitment, we will do so with an initial emphasis on healthy controls so as to minimize the risk to participants with POIS. Please rest assured that we will alert you as soon as we are able to have POIS participants in the lab again.
 
Thanks for your ongoing patience;
TKL

Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: Aladin on October 17, 2020, 02:31:50 AM
thanks, Demo!
I hope there is no risk that the funding might be cut if the crisis continues to rage...
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on November 03, 2020, 05:11:55 PM
Video of a female orgasm measured by Dr. Nicole Prause, NORD Co-investigator of POIS Research Study funded by POISCenter.com (Dr Tierney Lorenz is Primary Investigator).
https://www.youtube.com/watch?v=Zf4Tql0opJw
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on December 10, 2020, 06:13:19 PM
Cross-posted from Muon’s case
https://tinyurl.com/yxcwf2fc

Muon:

1) Should anal contractions always happen during orgasm?

2) What does it mean if anal contractions are absent during orgasm?

Dr. Nicole Prause via demo's email:

Hi,

1) Contractions are the main way we define orgasm physiologically, but contractions do not need to be present to experience pleasure and have fulfilling sexuality.

2) We don't know. I'm working on it. :)

Nicole Prause, Ph.D.
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on December 10, 2020, 06:20:34 PM
thanks, Demo!
I hope there is no risk that the funding might be cut if the crisis continues to rage...
Aladin, personally, I don’t see that happening. There are many other NORD studies of rare disorders...in the same boat as ours :)

[cc: of this post went to NORD & POIS Research Team]
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: Muon on December 30, 2020, 03:30:22 PM
Timestamp 16:19 POIS discussion: https://youtu.be/rFiehQLjPpk?t=979

Timestamp 43:32 potential POIS extension study in women?: https://youtu.be/rFiehQLjPpk?t=2612

Anti and pro-inflammatory cytokines/chemokines Pre and post O (https://poiscenter.com/forums/index.php?topic=2545.msg32239#msg32239)
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: Investigator on December 31, 2020, 03:33:50 AM
I love it how she puts it all in the context of studying depression more broadly. That's a really smart strategy when it comes to applying for grants.

Looking at Muon's cytokine test results, I would say, however, that I really wish the researchers would consider measuring whatever markers they have in mind also 24 hours after orgasm. That's when it gets interesting. Yes, it would make the study a little more difficult to accomplish, since participants would have to stay an extra night in LA. But I am confident it would be worth it and really hope it would be incorporated.

I plan to do a cytokine test as well and will let you know how it goes (an immunologist advised me to do one).   
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: Muon on December 31, 2020, 10:13:49 AM
I think orgasm is a double-edged sword. It may have an anti-inflammatory component. The 'reseting' some POISers describe could be temporary inhibition of inflammatory molecules (some sort of pushback). The strength of orgasm matters in my case. If I ejaculate and the orgasm is very weak, then I feel like crap immediately while a strong orgasm postpone the onset of feeling crap. Or it could be just masking perception with things like endorphins and/or complete ejection (I'm at least sure of the latter).  Precum itself generate symptoms especially when some of it stays behind in the urinary tract (I'm biased towards abnormal genitourinary MC behaviour in this regard). Norepi, orgasm, MCs and cytokines (https://poiscenter.com/forums/index.php?topic=2301.msg35425#msg35425).

I plan to do a cytokine test as well and will let you know how it goes (an immunologist advised me to do one).
We had a discussion about cytokine measurements over here: https://poiscenter.com/forums/index.php?topic=3207.msg37838#msg37838

You could take a look at the Reactive Oxygen Species (ROS) as well since they are byproducts of inflammation.
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on December 31, 2020, 11:08:06 AM
NEW POIS Interview

From: Dr Nicole Prause, PhD
To:     Demografx
Date:  December 30, 2020

“Hi Demo!

I talk a bit about the condition, our study, and an extension in this interview about halfway in

Dr Nicole Prause - Advancing Research In Sexual Psychophysiology, Sexual Biotechnology, And Sex-Tech - YouTube

NP”

Dr Nicole Prause, PhD
Co-investigator
POISCenter-funded
POIS Research Study 2020-2021


https://youtu.be/rFiehQLjPpk
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: Disaster on January 01, 2021, 01:38:52 AM
NEW POIS Interview

From: Dr Nicole Prause, PhD
To:     Demografx
Date:  December 30, 2020

“Hi Demo!

I talk a bit about the condition, our study, and an extension in this interview about halfway in

Dr Nicole Prause - Advancing Research In Sexual Psychophysiology, Sexual Biotechnology, And Sex-Tech - YouTube

NP”

Dr Nicole Prause, PhD
Co-investigator
POISCenter-funded
POIS Research Study 2020-2021


https://youtu.be/rFiehQLjPpk

I watched it yesterday. I?m surprised they only got 1 test subject done so far (she states in the video). I know there was a covid delay but I believe this was started in 2018, then was supposed to be recruited in early 2019, then that was delayed for equipment, and then I saw the delay for the extra funding. Do we know how much extra funding was provided for the Dream project or what are the extras being added? From my understanding studies do not have to be a mystery, even if they are investigative/observational studies rather than treatment/interventional studies. Maybe with psychological/behavioral studies that is the norm, but when researchers physically draw blood from patients to look for immune markers, hormones, ect.. no matter what they tell the patient it will not affect the results. That aspect they should fully disclose. So this is very strange to me. Even for the purpose of letting other researchers know what is being tested so maybe they could do different research(if there are any out there). When you go on ClinicalTrials.gov they show everything. Lastly how many patients are being recruited both healthy and POIS?

I honestly didn?t know the study started recruiting at all otherwise I would have advertised it on the facebook page. It was not advertised at all on the facebook page yet. I remember there was a problem with the survey where we were all getting rejected no matter what we entered.  And that is worrying if really bad  symptom POIS guys cant be included.

Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: Muon on January 02, 2021, 12:21:19 PM
Direct current stimulation for sexual enhancement (patent Liberos LLC) (https://www.youtube.com/watch?v=HtFvIwouRfI)

You cannot target areas of the brain by direct current with this setup. The current will distribute itself spatially in fractions over the entire brain propertional to the ratios of tissue electrical resistivity and conductivity.

Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: Drew1312 on January 05, 2021, 09:47:32 AM
NEW POIS Interview

From: Dr Nicole Prause, PhD
To:     Demografx
Date:  December 30, 2020

“Hi Demo!

I talk a bit about the condition, our study, and an extension in this interview about halfway in

Dr Nicole Prause - Advancing Research In Sexual Psychophysiology, Sexual Biotechnology, And Sex-Tech - YouTube

NP”

Dr Nicole Prause, PhD
Co-investigator
POISCenter-funded
POIS Research Study 2020-2021


https://youtu.be/rFiehQLjPpk

I watched it yesterday. I?m surprised they only got 1 test subject done so far (she states in the video). I know there was a covid delay but I believe this was started in 2018, then was supposed to be recruited in early 2019, then that was delayed for equipment, and then I saw the delay for the extra funding. Do we know how much extra funding was provided for the Dream project or what are the extras being added? From my understanding studies do not have to be a mystery, even if they are investigative/observational studies rather than treatment/interventional studies. Maybe with psychological/behavioral studies that is the norm, but when researchers physically draw blood from patients to look for immune markers, hormones, ect.. no matter what they tell the patient it will not affect the results. That aspect they should fully disclose. So this is very strange to me. Even for the purpose of letting other researchers know what is being tested so maybe they could do different research(if there are any out there). When you go on ClinicalTrials.gov they show everything. Lastly how many patients are being recruited both healthy and POIS?

I honestly didn?t know the study started recruiting at all otherwise I would have advertised it on the facebook page. It was not advertised at all on the facebook page yet. I remember there was a problem with the survey where we were all getting rejected no matter what we entered.  And that is worrying if really bad  symptom POIS guys cant be included.

For the people who don't wanna watch the whole think. At  16:20 she stars talking about it
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on January 11, 2021, 02:25:00 AM

For the people who don't wanna watch the whole thing.

At  16:20 she starts talking about it.
https://youtu.be/rFiehQLjPpk


Thanks, Drew1312! That 16:20 marker is very useful to start right in to see what Dr. Prause says about our POIS Study!
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on January 11, 2021, 02:27:25 AM

On a Science Vs. podcast, Dr. Nicole Prause - -
our co-investigator of the POISCenter-funded NORD Research Study of POIS 2021 - - discusses orgasm physiology and controversies.
https://tinyurl.com/y3u2e6dx
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on January 18, 2021, 11:20:55 PM

Dr. Nicole Prause, NORD’s co-investigator for the POISCenter-funded 2021 POIS Research Study, discusses sex addiction in this podcast:

https://tinyurl.com/yy2cbevt
Scroll down for interview link.

(https://assets.libsyn.com/content/92997383?height=250&width=250&overlay=true)

Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on January 21, 2021, 02:44:22 PM
My wife and I are getting received the 1st Pfizer Covid vaccine tomorrow. In L.A.

Hope this bodes well for resuming the *Liberos portion of the 2021 POIS Research study in L.A.!

cc:  Dr Lorenz
      Dr Prause

*Liberos is the West L.A. POIS-testing  laboratory headed by Dr Prause
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on January 21, 2021, 04:56:38 PM
I was just now (early) Covid-vaccinated with Pfizer drug/Part 1 of 2
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: certainlypois2 on January 21, 2021, 10:35:19 PM
My wife and I are getting received the 1st Pfizer Covid vaccine tomorrow. In L.A.

Hope this bodes well for resuming the *Liberos portion of the 2021 POIS Research study in L.A.!

cc:  Dr Lorenz
      Dr Prause

*Liberos is the West L.A. POIS-testing  laboratory headed by Dr Prause
Nice !
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on January 22, 2021, 12:55:48 AM
Thanks, CP2.
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: Clues on January 22, 2021, 02:46:52 AM
My wife and I are getting received the 1st Pfizer Covid vaccine tomorrow. In L.A.

Hope this bodes well for resuming the *Liberos portion of the 2021 POIS Research study in L.A.!

Nice, congrats on the vaccination! Just curious, what do you mean by the "Liberos portion" of the study? Is there another research organisation taking part?
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on January 22, 2021, 01:50:57 PM

What do you mean by the "Liberos portion" of the study? Is there another research organisation taking part?


Clues, the POIS physical testing portion (Orgasm measurement, blood work, brain, etc.)  is taking place at Liberos, LLC, a laboratory in West L.A. founded by NORD’s POIS co-investigator, Dr. Nicole Prause.
www.Liberoscenter.com

(https://external-preview.redd.it/Sng56jLrK0XHpv8QD8nAFaF_CG2HUw1KmBY9npR9g7U.jpg?auto=webp&s=0272d69233139bb0caba7aa57a0db4eb4ca804b0)
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on January 22, 2021, 02:07:44 PM

Nice, congrats on the vaccination!


Thank you!
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: Clues on January 22, 2021, 04:10:46 PM

What do you mean by the "Liberos portion" of the study? Is there another research organisation taking part?


Clues, the POIS physical testing portion (Orgasm measurement, blood work, brain, etc.)  is taking place at Liberos, LLC, a laboratory in West L.A. founded by NORD’s POIS co-investigator, Dr. Nicole Prause.

OK, so Liberos does the physical testing, but who does the analysis and writes the papers etc? I thought that was Liberos as well. Just asking out of interest. Thanks. :)
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on January 23, 2021, 02:22:42 AM
Clues, yes, you’re right, Liberos & Dr Tierney Lorenz will do the analytics and writing together. Thanks for pointing that out!
Title: Re: POIS 2021-2022 NORD RESEARCH STUDY
Post by: Drew1312 on February 02, 2021, 05:35:20 PM
From that interview i heard they have only one blood sample from one patient.Isn t that extremely scarce to deduct things fron it lol? I mean i get it   covid, but once covid crisis will go down  cause of vaccination , won t they bring in more poisers?
Title: Re: POIS 2021-2022 NORD RESEARCH STUDY
Post by: berlin1984 on February 03, 2021, 12:00:59 PM
I'm also a bit annoyed the study did not progress at all in 2020.

The study could have been done with mask (FFP2/N95) wearing requirement and it would have been perfectly safe.

At least that's how the covid summer 2020 was in Germany :-(
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on February 09, 2021, 04:12:10 AM
Dr. Nicole Prause, Founder, Liberos, LLC

One of our POIS
Scientific Researchers

(https://i.ytimg.com/vi/aK-zBBSqFV4/maxresdefault.jpg)

Dr Prause is POISCenter-funded NORD researcher/co-Investigator (Dr Tierney Lorenz is PI
[Principal Investigator] )

Dr Prause with Sex Positive Me covers the  latest science on Orgasmic Meditation, what POIS (post-orgasmic illness syndrome) is, the physiology of orgasm, and the physical threats to female scientists who try to conduct research in this area:
https://www.youtube.com/watch?v=-26bW8Q3wyw
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on February 09, 2021, 04:49:55 PM

I'm also a bit annoyed the study did not progress at all in 2020.

The study could have been done with mask (FFP2/N95) wearing requirement and it would have been perfectly safe.

At least that's how the covid summer 2020 was in Germany :-(


berlin1984, thank you for this, I asked
Dr Lorenz and Dr Prause to help me respond to your concerns - - which I’m sure reflect those of many other forum members - - and this is what they said:

”We were regulated by Los Angeles area laws regarding COVID, which prohibited laboratory research with (possibly) immunocompromised patients.

L.A. was conservative, but we also had very high infection rates, which have still not been addressed well. L.A. was not the only area of the country stuggling, of course, but it was not a risk we would want to take with individuals affected by POIS.
 
We understand (and share!) the frustration, and are actively monitoring the infection rates as well as vaccination, to see when it would be safe to re-start in-person recruitment. “

Dr. Tierney Lorenz
Dr. Nicole Prause
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: Muon on February 09, 2021, 05:01:02 PM
Is moving to another state an option?
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: demografx on February 09, 2021, 07:23:32 PM
Highly unlikely. Ties to UCLA. I don’t see Dr Prause uprooting her entire LA-based practice.
Title: Re: POIS 2020-2021 NORD RESEARCH STUDY
Post by: Muon on February 10, 2021, 04:51:48 PM
Suggestion for Dr. Lorenz:
IL-8 in seminal plasma (sIL-8) could be measured to probe for inflammation of the male genital tract.
https://sci-hub.se/https://pubmed.ncbi.nlm.nih.gov/23611586/

Sent.

From Dr. Lorenz re Muon’s suggestion:

“Thanks, Demo! I will look at that article. We are already planning on looking at several pro-inflammatory cytokines of the interleukin family, but it is good to see what is being done in this area as the research changes quickly.”
Title: Re: POIS 2021-2022 NORD RESEARCH STUDY
Post by: demografx on February 10, 2021, 10:29:48 PM

Is moving [the POIS Research Study laboratory work] to another state an option?


Highly unlikely. Ties to UCLA. I don’t see Dr Prause uprooting her entire LA-based practice.


cc: Dr Prause, Dr Lorenz
Title: Re: POIS 2021-2022 NORD RESEARCH STUDY
Post by: demografx on April 06, 2021, 06:21:22 PM
California aims to fully reopen the economy June 15 -

Today’s Los Angeles Times headline

https://tinyurl.com/2mfd2rcw

I sent the above to our POIS Research Group. They were very pleased to receive it.

As we all know, recruiting volunteers for the 2021-2022 POIS Research Study in Los Angeles at the Liberos, LLC laboratory has been put on hold due to COVID-19 restrictions in L.A.

Now we finally can see significant progress!
Title: Re: POIS 2021-2022 NORD RESEARCH STUDY
Post by: demografx on April 07, 2021, 10:53:49 AM
The 2021-2022 POIS Research Study funding from The Family Foundation - - that augments the NORD POIS grant funded by POISCenter members - - is to cover running 100 participants through an experimental protocol with measures of hormones and immune markers before and after orgasm.
Title: Re: POIS 2021-2022 NORD RESEARCH STUDY
Post by: Limejuice on April 07, 2021, 06:07:56 PM
Demo has been so kind as to confirm with the research team that the family foundation fund's additional tests will include inflammatory markers such as cytokines. This is important as inflammation is suspected to be the culprit in several POIS symptoms such as headaches, brain fog, joint cracking, and can help determine if autoimmune disease is a root cause. FYI
Title: Re: POIS 2021-2022 NORD RESEARCH STUDY
Post by: demografx on April 07, 2021, 06:18:28 PM
Limejuice, many thanks!!
Title: Re: POIS 2021-2022 NORD RESEARCH STUDY
Post by: Journey on April 09, 2021, 06:00:37 AM
I am glad that they are doing this, having POIS for several years in my life mentally I feel like Anakin burning on the Mustafar (/u/AquantiV from Reddit came up with this comparison for POIS but it also fits what POIS makes me feel like in the general)

Just waiting till some sort of answer is found
Title: Re: POIS 2021-2022 NORD RESEARCH STUDY
Post by: demografx on April 09, 2021, 11:46:58 AM


I feel like Anakin burning on the Mustafar


;D Dear Anakin ;D

Thanks for posting!


(https://media4.giphy.com/media/avMxT2174fEKk/200w.gif?cid=82a1493bimdx3wamhgnh82gx16xrsprqti0nm2hkrf799b3l&rid=200w.gif)
Title: Re: POIS 2021-2022 NORD RESEARCH STUDY
Post by: demografx on April 10, 2021, 02:04:03 AM
Please keep in mind: POIS research direction and methodology is strictly between the Research Investigators (Drs. Lorenz & Prause) and NORD’s MAC:

:) MAC FAQ :)

Q. Who evaluates all of the POIS Grant proposals for NORD (our Grant administrator) and who does the final award/selection of our Researcher/PI (Principal Investigator)? And who monitors/sends us periodic updates?

A. NORD's Scientific and Medical Advisory Committee (also known as "MAC") -- does all of the above.

The NORD MAC ( Medical Advisory Committee ) is comprised of physician/researchers who share their experience and expertise on behalf of patients and families affected by POIS They are:

Marshall L. Summar, MD, Chair, NORD Strategic Advisory Committee
Division Chief, Genetics and Metabolism
Margaret O’Malley Chair of Molecular Genetics
Children’s National Medical Center
Professor, Pediatrics, George Washington
University School of Medicine and Health Sciences

Frederick Askari, MD, PhD
Associate Professor, Hepatology
Division of Gastroenterology
Director, Wilson Disease Program
University of Michigan Health System

Matthias Baumgartner, Prof DrMed
Associate Professor for Metabolic Diseases
University of Zurich
Head, Division of Metabolics
Children’s Hospital Zurich

Garrett E. Bergman, MD
Senior Director, Medical Affairs
Kedrion USA

Preston W. Campbell, III, MD
Executive Vice President for Medical Affairs
Cystic Fibrosis Foundation
Associate Professor of Pediatrics
Johns Hopkins Cystic Fibrosis Center

Robert M. Campbell, Jr., MD
Division of Orthopaedics
Director, Center for Thoracic Insufficiency
Syndrome
Children’s Hospital of Philadelphia

Harry (Hal) Dietz, MD
Victor A. McKusick Professor of Genetics
and Medicine
Investigator, Howard Hughes Medical Institute
Johns Hopkins University School of Medicine
McKusick-Nathans Institute of Genetic Medicine

Gregory M. Enns, MD
Associate Professor of Pediatrics (Genetics)
Lucile Packard Children’s Hospital
Associate Professor – Med Center Line,
Pediatrics – Medical Genetics
Member, Child Health Research Institute
Stanford University School of Medicine

Marlene Haffner, MD, MPH
President and CEO
Haffner Associates, LLC

James E. Heubi, MD
Director, Clinical Translational Research Center
Co-Director, Center for Clinical and
Translational Science and Training
Associate Dean, Clinical and Translational
Research
Professor, Department of Pediatrics
Cincinnati Children’s Hospital Medical Center

James F. Leckman, MD
Neison Harris Professor of Child Psychiatry
Psychiatry, Psychology and Pediatrics
Yale Child Study Center
Yale School of Medicine

Brendan Lee, MD, PhD
Robert and Janice McNair Endowed Chair in
Molecular and Human Genetics
Professor of Molecular and Human Genetics
Baylor College of Medicine
Investigator, Howard Hughes Medical Institute

James E. Lock, MD
Cardiologist-in-Chief
Boston Children’s Hospital
Alexander S. Nadas Professor of Pediatrics
Harvard Medical School

Mary Jean Sawey, PhD
Senior Vice President, Medical Director
ICC LOWE Inc.

Susan Winter, MD
Medical Director, Genetics and Metabolism
Children’s Hospital Central California

Doris T. Zallen, PhD
Professor of Science and Technology
Studies and Humanities
Virginia Tech University

Contractually, we POISers do *not* have any control over *how* they choose to study POIS. NORD’s medical and scientific objectivity is one big reason we funded them in the first place.
Title: Re: POIS 2021-2022 NORD RESEARCH STUDY
Post by: BoneBroth on April 10, 2021, 03:10:49 PM
The POIS riddle can not only be solved by new research but also theoretically, based on existing knowledge, experiences and analyse results. I put far more hope in the latter then any new research. The outcome of mainstrem medical research will probably just be endless of years and after 20+ years, at best, a medicine that just hide symptoms and results in sideeffects like lower quality of life and shortened life time - just like 90% of all other pharmaceuticals. I strongly suggest that, parallell to this NORD research (that we obviously have zero influence over), we fundraise microprojects like booking appointments with, and presenting existing data for, hormonal experts. For example an evaluation at belgian doctor and world renomee hormonal expert Thierry Hertoge would cost around $600- $1000 including analyses. We must at least get experts like him to give their professional opinion on this disease and existing information.
   

Title: Re: POIS 2021-2022 NORD RESEARCH STUDY
Post by: demografx on April 11, 2021, 02:37:07 AM
BoneBroth, I agree that we should explore as many different research avenues as possible. But we also need to be realistic about our limited fundraising, budgeting and oversight capabilities.

As Quantum explains, it took enormous efforts - - since 2007 - - to just get this far. For a rare disorder, we are achieving comparatively great strides.

If you, BoneBroth (and others) are willing to step forward and put in significant amounts of time, including fundraising, to steer us in new research directions, POISCenter’s admin & mod team will be very grateful. 
Title: Re: POIS 2021-2022 NORD RESEARCH STUDY
Post by: BoneBroth on April 11, 2021, 03:14:02 AM
I would! If the fundraising could be trusted and anonymous. How do you handle donations at the present? Unfortunatly many POIS'ers have not been able to have normal jobs and therefore do not have much money to set aside. I vote for starting a secure fundraising system for our members. One option would be a fundraising thread where members give a "donating promise" for each mission (sub thread) provided the monetary goal is achieved. There are many commercial donation platforms (https://www.crowdcrux.com/best-low-cost-fundraising-websites/) on the market, but fundraising sites keep a percentage of the donations.
Title: Re: POIS 2021-2022 NORD RESEARCH STUDY
Post by: Limejuice on April 11, 2021, 07:51:56 AM
Hi Bonebroth,

Demo can correct me if wrong but the family foundation that has bolstered our NORD study testing scope has now included hormone testing (both pre and post POIS). Is there a particular hormone test and/or test approach that your curious about?
Title: Re: POIS 2021-2022 NORD RESEARCH STUDY
Post by: BoneBroth on April 11, 2021, 08:44:52 AM
Hey Limejuice!

I'm just saying that this forum is starved of professionals views on POIS. There's a lot of personal experiences and the lab tests are growing but I havn't found one single opinion from a hormonal expert here. We need to contact such professionals to evaluate current information.

For this to work we need:

1. A POIS-compilation consisting of, for example, personal stories, lab tests, studies, theories.
2. A meeting with an expert (1-2 hours?). They dont come free so we would need to fundraise.
3. They might want to do a blood analyse of someone with POIS. We need fundraising for that too.

Maybe we should ask a couple of professionals what it would cost.
Title: Re: POIS 2021-2022 NORD RESEARCH STUDY
Post by: Quantum on April 11, 2021, 09:08:47 AM
Hi BoneBroth,

Your idea of micro projects is good but has some potential issues, like, what hypothesis will these microprojects be working on ( many differents views on POIS potential causes, not just hormones), and who will pay for what micro-project ( one campaign for each ?), and who will undergo the testing, and what if some problems arise ( the ethical and responsibility side... remember the Rutgers study...), and if many projects are on the table which one will go first, and so on. This is not as simple as it seems, and will call for debate, preparation, funding, coordination, and even maybe legal papers if treatments are tested.  Obviously, poiscenter, as a whole forum, has chosen the legal frame of NORD to avoid that kind of issue, and invested time and money in a larger, but slower project, and will stick to that approach for now, because resources, both in time and money, are limited.

However, any micro-projects for POIS would be useful for POIS research, and poiscenter would be a great place to share ideas of such projects, and sharing the progress and discuss those micro-projects, and publish their outcome.  But as I see it now, they would probably be supported financially and legally by those who will invest the considerable time needed to undertake them.   Obviously, creating a team for a specific micro-project would be needed, but only that, creating a team, is sometimes complicated on poiscenter .

I recently wrote a historical account  POIS research funding by poiscenter ( https://poiscenter.com/forums/index.php?topic=3781.msg40119#msg40119 (https://poiscenter.com/forums/index.php?topic=3781.msg40119#msg40119) ), to show that POIS research is a very slow process and needs patience and dedication. And, yes, you are totally right, BoneBroth, POIS research does take years and years, as you see in this account... but this is how it works in the world of research.   Micro-projects may allow for some faster, partial results, but in proportion, a lot of preparation and time will be needed anyway, and there will be problems to manage along the way for sure.

Personally, I will follow with great interest any project of yours, but I already invest a lot of spare time in helping to manage and to moderate the forum, and, when it will resume, to help with the upcoming NORD study.

About POISCenter being a place that could host a fundraising link for your micro-projects or any other micro-project, this would have to be discussed among the moderators' team, as it is a request we never had before.   If you go ahead with your project and it gains momentum and you want to go ahead with it, let us know and we will discuss this within the moderators' team.

Anyway, thank you for your sincere intention and your involvement in helping to solve the POIS puzzle :)
Title: Re: POIS 2021-2022 NORD RESEARCH STUDY
Post by: Limejuice on April 11, 2021, 09:52:57 AM
That makes sense and I'd support your efforts in the framework that Quantum laid out.  In 2013 I saw an endocrinologist regarding POIS but strangely all she suggested was a vitamin B panel (and nothing to do with hormones).  On another note, we know that hormones like testosterone (and progesterone to a lesser extent) work good at reducing symptoms for some sufferers.

With the current study, our researchers are very knowledgeable in hormones and I bet the final data on hormones could be useful in a follow up study if needed.  But that could take awhile.

In contrast to a major study, you could take a more personal approach in designing a study with a Dr.  that could be flexible, and faster, and use personal insurance to finance. I've done this over the years, which has included a gel electrophoresis on my semen to dissect it's DNA and then ran antibody tests against each dissection to see if allergic reactions (IgE and IgG) would occur. I worked with Jonathan A. Bernstein from the University of Cincinnati.

Edit - The 'study' with Dr Bernstein cost about $3000 and insurance covered 80% although it was a struggle. The seminal plasma hypersensitivity study came with a 5 page report that he personally wrote including the method, analysis of results, and recommendation. Gel electrophoresis images with IgE and IgG marker graphs were very professionally done.
Title: Re: POIS 2021-2022 NORD RESEARCH STUDY
Post by: BoneBroth on April 11, 2021, 10:40:15 AM
Yes I see the problems involved with prioriting microprojects. That is something we could discuss. But for now I limit my suggestion to only one microproject - to get professionals view. Let's set a goal to 10 diffrent professionls. Then the question is which professionals? Perhaps that is something we could discuss. My aim here is to enrich the POIS forum with professional thoughts on the subject and I belive that there are experts that can explain this symptom far more then anyone here has.
Title: Re: POIS 2021-2022 NORD RESEARCH STUDY
Post by: demografx on April 11, 2021, 12:54:33 PM

...If the [POIS Research] fundraising could be trusted and anonymous. How do you handle donations at the present?...


We would look to you to manage that. I was the
Team Leader in raising $34,000 right here for the NORD portion of the current study, and believe me, it was extraordinarily tough and time consuming.
It took 5-6 years! Starting at the NSF/POIS Forum in 2007. Because NSF prohibited fundraising, we all packed our bags and started POISCenter, as Quantum mentioned, in 2011.
https://poiscenter.com/forums/index.php?topic=125.0
Above link: 15-page thread that covers only a small portion of our fundraising history.

I ran my own business and this was harder than any of my business projects! Frankly, I’m burned out from doing it, so I leave that up to you.


Post-edit: our current NORD Research Team is committed to helping us eventually tap into big Government Grant money - - over $39 billion is spent annually on medical research. The most important first step: completing this current study, which will give us the credibility that is needed to attract major interest in POIS! This would also help BoneBroth’s interest in sub-projects which could be
sub-contracted to various professionals in very specific areas, e.g., hormones.

There are many ways to go, and they don’t necessarily “compete” with one another.
Title: Re: POIS 2021-2022 NORD RESEARCH STUDY
Post by: Muon on April 13, 2021, 03:45:22 PM
If the POIS study is going to measure Interferon-gamma then I suggest measurements to be taken =>24h post O as well. Argument:
https://poiscenter.com/forums/index.php?topic=2545.msg40256#msg40256

You may want to send this post to the researchers. Not only for the above argument but also for type IV hypersensitivity behaviour.
Title: Re: POIS 2021-2022 NORD RESEARCH STUDY
Post by: demografx on April 13, 2021, 10:41:31 PM
If the POIS study is going to measure Interferon-gamma then I suggest measurements to be taken =>24h post O as well. Argument:
https://poiscenter.com/forums/index.php?topic=2545.msg40256#msg40256

You may want to send this post to the researchers. Not only for the above argument but also for type IV hypersensitivity behaviour.

Sent, Muon. Thanks!
Title: Re: POIS 2021-2022 NORD RESEARCH STUDY
Post by: demografx on April 14, 2021, 01:58:22 PM

If the POIS study is going to measure Interferon-gamma then I suggest measurements to be taken =>24h post O as well. Argument:
https://poiscenter.com/forums/index.php?topic=2545.msg40256#msg40256

You may want to send this post to the researchers. Not only for the above argument but also for type IV hypersensitivity behaviour.


Sent, Muon. Thanks!

From Dr. Tierney Lorenz (POIS Study PI -[Primary Investigator])

cc:    Dr Nicole Prause (co-Investigator)

“Thanks Demo–
 
As always we appreciate the links to ongoing research!
 
Cheers
TKL”
Title: Re: POIS 2021-2022 NORD RESEARCH STUDY
Post by: Mushnikk on April 14, 2021, 02:39:37 PM
Are the researchers aware of Nanna1s extensive "transient immune supression" theory? To me it seems to be the most detailed theory posted on this forum.
Title: Re: POIS 2021-2022 NORD RESEARCH STUDY
Post by: demografx on April 14, 2021, 04:19:16 PM
Are the researchers aware of Nanna1s extensive "transient immune supression" theory? To me it seems to be the most detailed theory posted on this forum.

Mushnikk, which link should I send?
Title: Re: POIS 2021-2022 NORD RESEARCH STUDY
Post by: Hopeoneday on April 14, 2021, 04:34:51 PM
Are the researchers aware of Nanna1s extensive "transient immune supression" theory? To me it seems to be the most detailed theory posted on this forum.
What is intresting, 2-3 poisers reported recently complit dioposite from this
theory, no pois after norephiderphine incrising medication...
Some of them took it as prepack only..
Title: Re: POIS 2021-2022 NORD RESEARCH STUDY
Post by: Prospero on April 15, 2021, 07:30:27 AM
Are the researchers aware of Nanna1s extensive "transient immune supression" theory? To me it seems to be the most detailed theory posted on this forum.

Mushnikk, which link should I send?

He's thinking of this thread : Transiently Induced Immune Deficiency and therapy (https://poiscenter.com/forums/index.php?topic=3151.0), which is a sequel of this one : Ideas on Herpes Induced POIS (https://poiscenter.com/forums/index.php?topic=2683)
Title: Re: POIS 2021-2022 NORD RESEARCH STUDY
Post by: Journey on April 15, 2021, 07:44:33 AM
Are the researchers aware of Nanna1s extensive "transient immune supression" theory? To me it seems to be the most detailed theory posted on this forum.
What is intresting, 2-3 poisers reported recently complit dioposite from this
theory, no pois after norephiderphine incrising medication...
Some of them took it as prepack only..
Have you tried any noradrenaline reuptake inhibitor medicines?
Title: Re: POIS 2021-2022 NORD RESEARCH STUDY
Post by: Mushnikk on April 15, 2021, 10:26:31 AM
Are the researchers aware of Nanna1s extensive "transient immune supression" theory? To me it seems to be the most detailed theory posted on this forum.

Mushnikk, which link should I send?

He's thinking of this thread : Transiently Induced Immune Deficiency and therapy (https://poiscenter.com/forums/index.php?topic=3151.0), which is a sequel of this one : Ideas on Herpes Induced POIS (https://poiscenter.com/forums/index.php?topic=2683)

Yes, that is the one that I meant. Not only the most detailed hypothesis but also thought of by someone with a science background (I believe a Phd in biochemistry).
Title: Re: POIS 2021-2022 NORD RESEARCH STUDY
Post by: demografx on April 15, 2021, 02:36:48 PM
Are the researchers aware of Nanna1s extensive "transient immune supression" theory? To me it seems to be the most detailed theory posted on this forum.

Mushnikk, which link should I send?

He's thinking of this thread : Transiently Induced Immune Deficiency and therapy (https://poiscenter.com/forums/index.php?topic=3151.0), which is a sequel of this one : Ideas on Herpes Induced POIS (https://poiscenter.com/forums/index.php?topic=2683)

Yes, that is the one that I meant. Not only the most detailed hypothesis but also thought of by someone with a science background (I believe a Phd in biochemistry).

Sent all the above. Thanks!
Title: Re: POIS 2021-2022 NORD RESEARCH STUDY
Post by: demografx on April 21, 2021, 01:16:59 AM
"We have to be able to crack that shame to use sex as medicine."


(https://i.ytimg.com/vi/aK-zBBSqFV4/maxresdefault.jpg)

Dr. Nicole Prause (POIS Research Study 2021-2022 co-Investigator) interview with Olivia Clementine about male sexual dysfunction, vibrator effects, and pornography concerns.
https://player.fm/series/love-liberation/dr-nicole-prause-science-of-sex-arousal-aging-ejaculation

Some of what Dr. Prause shares includes:

Pleasure from a neurological point of view
Emotions relationship with sexual arousal experience
Studying early phases of arousal
Libido and depression
Sexual addiction misdiagnosis and mistreatment
Sex drive
Impact on libido from masturbation, mother fatigue, communication, menopause
Sexual behavior and trends with age
What is an orgasm?
Rapid ejaculation and erectile “dysfunction” misperceptions and solutions
Impact of vibratory stimulation on genitals
Pornography pros and cons
Sex to improve general health, including sleep, partner factors, connected and versus disconnected.
Hostile environment in the US for doing sexual research
Barrier of what sex is supposed to be used for, and what it is not supposed to be used for
~

Links:

https://www.liberoscenter.com/about/

www.oliviaclementine.com