Author Topic: POIS NORD RESEARCH STUDY  (Read 147530 times)

demografx

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #400 on: June 11, 2021, 11:53:56 PM »
Hi, everyone,

Research Study suggestions that we make at this forum (such as those you have made in this thread) must go through an extensive vetting process with the 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

which would create a disproportionate delay for  every considered change, regardless of how small. The protocol has been established now and we just need to move forward with the methodology already in place.

In discussing the above with the POIS Research Team, they shared this:

“While it’s good to suggest routes for potential research studies, each individual study needs to focus on a few things at a time to be able to make any headway. The research must go through an extensive vetting process with the IRB and biological safety committees, which would create a disproportionate delay for every considered change, regardless of how small. And the grant agency has already approved the proposed factors that will be studied in this particular study. So while we don’t discourage anyone from speculating about possible factors to investigate in the future, for the study that is already underway, it will not be possible to make changes to what factors we are focusing on."

Have a nice weekend!
Demo
« Last Edit: September 21, 2021, 09:26:28 AM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #401 on: July 29, 2021, 05:20:30 PM »
PREVIOUS GOOGLE ALERT: Interesting 2019 neswpaper article about our POIS Research grant through NORD!

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.

https://www.google.com/amp/s/journalstar.com/news/local/education/crowdfunded-grant-will-help-unl-researcher-study-sex-related-condition/article_131c1916-2b01-5d39-951c-af209d7f3baf.amp.html
« Last Edit: July 29, 2021, 07:03:15 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #402 on: July 29, 2021, 07:30:37 PM »
Some forum members have expressed difficulty in accessing the above link, so here is a text version of that 2019 article.



Crowdfunded grant will help UNL researcher study sex-related condition
      By CHRIS DUNKER Lincoln Journal Star Jun 26, 2019 Updated Jun 27, 2019




Dr. Tierney Lorenz, our
POISCenter-funded
Research Study 2021-2022
Principal Investigator


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.”






Dr. Nicole Prause
POISCenter-funded NORD Study’s researcher/co-Investigator



For those of you who haven’t seen the original announcement.


Our POIS Research Team


https://rarediseases.org/for-clinicians-and-researchers/research-opportunities/research-grant-recipients/
(See 2018 Research Grant Recipients)

From NORD:

Dear Demo,

We are very pleased to tell you that NORD's Medical Advisory Committee has selected the following POIS research project for funding:

Principal Investigator: Tierney Lorenz, PhD
Institution: University of Nebraska-Lincoln
Project Title:  Autonomic, endocrine, and immune mediators of Post-Orgasmic Illness Syndrome.

With funding from POISCenter.com

Congratulations!  We recognize that this has been a long journey for the POIS community and are so excited that this grant funding will be used to support Dr. Lorenz and her team in advancing the field of POIS research.

Research Administration
National Organization of Rare Disorders (NORD)





Dr. Tierney Lorenz, our Primary Investigator



Dr. Nicole Prause, our Co-Investigator




The POIS data will be collected at Dr. Prause’s lab (Liberos LLC) in Los Angeles, but both Dr. Lorenz and Dr. Prause will be analyzing it.
www.liberoscenter.com


« Last Edit: November 13, 2021, 03:39:06 AM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #403 on: July 29, 2021, 09:19:10 PM »



POISCenter-funded NORD researcher/co-Investigator
Dr. Nicole Prause’s TedX talk on orgasm:
https://m.youtube.com/watch?v=aK-zBBSqFV4
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Samir

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #404 on: September 20, 2021, 10:44:03 AM »
Impressive Amazon reviews:
https://www.amazon.com/GNC-Mega-Men-Multivitamin-Caplets/product-reviews/B00416PMU2?reviewerType=all_reviews
Interesting.  I looked at the number one negative review and it talks about how much Niacin is in it--which might explain why it does work so well.  But this is actually different than the vitality pack, which sams club just started carrying again at wholesale prices (1/2 of gnc retail prices).  Of course, this is after I bought a supply from gnc thinking sams wouldn't carry it again.  ::)

Samir

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #405 on: September 20, 2021, 10:48:26 AM »
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

Dr Nicole Prause is our POIS Research Study co-Investigator


Since we are all now getting closer to re-starting the 2021-2022 POIS Research Study (sorry we can’t tell you exactly when due to COVID status in Los Angeles), it might be a good time for those of you who are unfamiliar with it - - to review what it’s all about:
https://poiscenter.com/forums/index.php?topic=3006.0
Can't wait for this to be back on!  The only way to figure this thing out for real will be with studies.  We can all come up with our own management in the meantime, but it will be nice to know exactly what is going on and have a real treatment for it.

demografx

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #406 on: September 21, 2021, 12:35:51 AM »


POISCenter-funded NORD Study’s researcher/co-Investigator
Dr. Nicole Prause’s TedX talk on orgasm:

https://m.youtube.com/watch?v=aK-zBBSqFV4
« Last Edit: September 26, 2021, 05:16:40 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Clues

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #407 on: September 21, 2021, 03:46:40 AM »
Since we are all now getting closer to re-starting the 2021-2022 POIS Research Study POISer volunteer tecruiting (sorry we can’t tell you exactly when due to COVID status in Los Angeles), it might be a good time for those of you who are unfamiliar with it - - to review what it’s all about:
https://poiscenter.com/forums/index.php?topic=3006.0

So exciting, can't wait for this to get rolling.

demografx

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #408 on: September 21, 2021, 09:23:53 AM »
Some forum members have expressed difficulty in accessing our 2021-2022 POIS-study’s newspaper article link, so here is a text version of that 2019 article.



Crowdfunded [from POISCenter forum members!] grant will help UNL researcher study sex-related condition [POIS]
      By CHRIS DUNKER Lincoln Journal Star Jun 26, 2019 Updated Jun 27, 2019




Dr. Tierney Lorenz, our
POISCenter-funded
Research Study 2021-2022
Principal Investigator


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 [NORD] 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 [NORD] 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.”






Dr. Nicole Prause
POISCenter-funded NORD Study’s researcher/co-Investigator





« Last Edit: September 23, 2021, 11:28:16 AM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #409 on: September 22, 2021, 08:37:05 AM »

Can't wait for this [2021-2022 POIS Research Study] to be back on!  The only way to figure this thing out for real will be with studies.  We can all come up with our own management in the meantime, but it will be nice to know exactly what is going on and have a real treatment for it.


Thank you, Samir!
Extremely well said,
Demo


« Last Edit: September 23, 2021, 12:00:30 AM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

IronFeather

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #410 on: September 23, 2021, 02:00:15 PM »
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.

I don't mean to sound negative or overly critical, but I think it is important to say this: I don't understand how a specialist that is going to carry out a study about POIS syndrome can describe it the way she did here. It is not a condition that affects only men (I'm not the only woman here who has described the same symptoms shared by men), it's not even only about sex for most of us (exercise intolerance, chemical sensitivities...), and I doubt that "coughing and sneezing" is the most common symptom. If I were asked about it, I would rather say it's marked by a generalized inflammatory response (fever, muscle pain and stiff joints, swollen lymph nodes, sore throats, headaches, fatigue, cognitive impairment...).

Anyway, I do hope the study gets rolling soon and that the investigators will find something out... It's the only thread of hope I'm holding onto right now.
« Last Edit: September 23, 2021, 02:03:08 PM by IronFeather »
26-year-old Spanish woman with POIS symptoms for the last 13 years.
Suffering from exercise intolerance since April 2020.
My case thread, with medical tests results.

Slight0

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #411 on: September 23, 2021, 10:55:27 PM »
Hasn't it been like 4 years since this study was trying to take off and still no progress? This thing is probably never coming out in our lifetime.

Clues

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #412 on: September 24, 2021, 01:51:29 AM »
I don't mean to sound negative or overly critical, but I think it is important to say this: I don't understand how a specialist that is going to carry out a study about POIS syndrome can describe it the way she did here. It is not a condition that affects only men (I'm not the only woman here who has described the same symptoms shared by men), it's not even only about sex for most of us (exercise intolerance, chemical sensitivities...), and I doubt that "coughing and sneezing" is the most common symptom. If I were asked about it, I would rather say it's marked by a generalized inflammatory response (fever, muscle pain and stiff joints, swollen lymph nodes, sore throats, headaches, fatigue, cognitive impairment...).

What the researchers have stated before, which makes a lot of sense IMO, is that for the study to be feasible and quantifiable, they have to limit the scope and say sure, POIS sufferers have a lot of other symptoms and triggers as well, but we're measuring specifically what happens to various biomarkers after orgasm in men that fit a certain specific definition of POIS.

Note: I'm not quoting anyone here, just conveying the sentiment as I understood it.

Personally I'm thinking along similar lines to you, that it's probably the immune system and autonomic nervous system being overly sensitive for some reason, which AFAIK is very similar to a bunch of other conditions like MCAS, long covid, fibromyalgia etc. But it's still very interesting to see specifically what happens to POIS folks post orgasm. I don't think the researchers are aiming to solve these broader chronic inflammation issues, which would make no sense anyway given the very small budget.

Hasn't it been like 4 years since this study was trying to take off and still no progress? This thing is probably never coming out in our lifetime.

Studies take time at the best of times. You have to settle on the details, get your it approved, sort out the finances, etc. This one happened to be interrupted by a pandemic. Have hope. :)

demografx

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #413 on: September 24, 2021, 02:19:15 AM »
Hasn't it been like 4 years since this study was trying to take off and still no progress? This thing is probably never coming out in our lifetime.

1. 2 years, not 4

2. COVID-based delay

3. Everything’s in synch to….GO!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #414 on: September 24, 2021, 02:49:52 AM »
Thank you, Clues, for responding to POIS Research Study questions!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #415 on: September 26, 2021, 05:17:03 PM »



POISCenter-funded NORD Study’s researcher/co-Investigator
Dr. Nicole Prause’s TedX talk on orgasm:

https://m.youtube.com/watch?v=aK-zBBSqFV4

10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #416 on: October 03, 2021, 08:52:32 PM »
“COVID-19 hospitalization numbers dropped again Saturday in Los Angeles County, continuing a month-long downward trend.“

From NBC News today.

Los Angeles is the city where the POIS Research Study 2021-2022 will perform laboratory work and investigations of POIS Study volunteers.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Journey

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #417 on: November 05, 2021, 12:05:41 PM »
They will find nothing probably and covid restrictions might not ever end at all they might keep changing how much % of vaccination is required and so on

I have low hope for anything coming out from those POIS studies, the medical community has IGNORED chronic visible disorders including ME/CFS, MCAS, POIS and many said they are in people's heads, thousands of people personal experiences, and year long-sufferings just discarded like a bin of old unused clothes into the trashcan in a corner where no one sees it and then thrown away into the dumpster storage

demografx

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #418 on: November 05, 2021, 02:35:36 PM »
Journey, I started the search here for POIS Research in 2007.

Incredibly frustrating? Yes.

Am I giving up? No
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Trala151655

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #419 on: November 19, 2021, 05:49:39 AM »
Has anyone any idea around when will the study restart considering everything?