Author Topic: POIS 2021-2022 NORD RESEARCH STUDY  (Read 30649 times)

berlin1984

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #330 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 :-(

demografx

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Re: POIS 2020-2021 NORD RESEARCH STUDY
« Reply #331 on: February 09, 2021, 04:12:10 AM »
Dr. Nicole Prause, Founder, Liberos, LLC

One of our POIS
Scientific Researchers



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
« Last Edit: February 13, 2021, 09:29:57 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 #332 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
« Last Edit: February 10, 2021, 10:24:59 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 #333 on: February 09, 2021, 05:01:02 PM »
Is moving to another state an option?

demografx

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Re: POIS 2020-2021 NORD RESEARCH STUDY
« Reply #334 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.
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 #335 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.”

demografx

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #336 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
« Last Edit: April 06, 2021, 07:26:42 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 #337 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!
« Last Edit: April 07, 2021, 07:40:24 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 #338 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.
« Last Edit: April 07, 2021, 11:06:17 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

Limejuice

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #339 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
« Last Edit: April 09, 2021, 05:45:37 PM by demografx »

demografx

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #340 on: April 07, 2021, 06:18:28 PM »
Limejuice, many thanks!!
« Last Edit: April 09, 2021, 05:42:06 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

Journey

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #341 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
« Last Edit: April 09, 2021, 12:10:15 PM by demografx »

demografx

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #342 on: April 09, 2021, 11:46:58 AM »


I feel like Anakin burning on the Mustafar


;D Dear Anakin ;D

Thanks for posting!



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 #343 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.
« Last Edit: April 10, 2021, 02:08:49 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

BoneBroth

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #344 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.