Author Topic: POIS 2021-2022 NORD RESEARCH STUDY  (Read 30651 times)

demografx

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Re: POIS 2020-2021 NORD RESEARCH STUDY
« Reply #300 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!
:)
« Last Edit: September 30, 2020, 02:33:06 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 2019-2020 NORD RESEARCH STUDY
« Reply #301 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
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

Drew1312

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #302 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

Aladin

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Re: POIS 2020-2021 NORD RESEARCH STUDY
« Reply #303 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?

demografx

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Re: POIS 2020-2021 NORD RESEARCH STUDY
« Reply #304 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.
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 2020-2021 NORD RESEARCH STUDY
« Reply #305 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

« Last Edit: October 16, 2020, 12:08:28 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

Aladin

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Re: POIS 2020-2021 NORD RESEARCH STUDY
« Reply #306 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...

demografx

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Re: POIS 2020-2021 NORD RESEARCH STUDY
« Reply #307 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
« Last Edit: November 03, 2020, 05:39:05 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 2020-2021 NORD RESEARCH STUDY
« Reply #308 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.
« Last Edit: December 10, 2020, 06:15:12 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 2020-2021 NORD RESEARCH STUDY
« Reply #309 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]
« Last Edit: December 10, 2020, 06:42:29 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

Muon

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Re: POIS 2020-2021 NORD RESEARCH STUDY
« Reply #310 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
« Last Edit: December 30, 2020, 03:50:49 PM by Muon »

Investigator

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Re: POIS 2020-2021 NORD RESEARCH STUDY
« Reply #311 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).   
« Last Edit: December 31, 2020, 03:50:37 AM by Investigator »

Muon

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Re: POIS 2020-2021 NORD RESEARCH STUDY
« Reply #312 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.

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.
« Last Edit: December 31, 2020, 11:04:55 AM by Muon »

demografx

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Re: POIS 2020-2021 NORD RESEARCH STUDY
« Reply #313 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
« Last Edit: December 31, 2020, 11:14:13 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

Disaster

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Re: POIS 2020-2021 NORD RESEARCH STUDY
« Reply #314 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.