Author Topic: POIS NORD RESEARCH STUDY (Read 147047 times)

demografx · « **on:** May 08, 2019, 01:50:30 PM »

NORD/POIS 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

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

Quote from: demografx

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 [NORD] 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 hopefully 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

demografx · « **Reply #1 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, they are the UNL (University of Nebraska - Lincoln) and UCLA (University of California Los Angeles) IRB’s.

fernab · « **Reply #2 on:** May 08, 2019, 02:20:35 PM »

Thank you Demo for updating us!

demografx · « **Reply #3 on:** May 08, 2019, 02:21:32 PM »

fernab, you’re quite welcome.

demografx · « **Reply #4 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

demografx · « **Reply #5 on:** May 30, 2019, 10:51:40 AM »

Quote from: demografx on May 08, 2019, 01:50:30 PM

NORD/POIS 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 is the

FULL IRB REVIEW

of our self-funded POIS study at

University of Nebraska - Lincoln

& Liberos LLC laboratory - L.A.

fernab · « **Reply #6 on:** May 30, 2019, 01:49:53 PM »

Crossing fingers!

Thank you for updating us Demo!

demografx · « **Reply #7 on:** May 30, 2019, 06:23:42 PM »

You’re welcome, fernab.

demografx · « **Reply #8 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.

Quantum · « **Reply #9 on:** May 31, 2019, 06:45:36 AM »

Thanks for the update, Demo !

The process follows its normal course.

fernab · « **Reply #10 on:** May 31, 2019, 06:49:25 AM »

Thank you Demo!.... yes we have to be very patient....no choice!

demografx · « **Reply #11 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!

demografx · « **Reply #12 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.

demografx · « **Reply #13 on:** June 15, 2019, 12:51:08 PM »

Quote from: demografx on June 15, 2019, 12:34:55 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.

demografx · « **Reply #14 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

demografx · « **Reply #15 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!

Nas · « **Reply #16 on:** June 20, 2019, 05:57:40 PM »

Anyone recruited yet?
Keep the names classified obviously, just want to know numbers?

demografx · « **Reply #17 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.

demografx · « **Reply #18 on:** June 20, 2019, 06:04:20 PM »

Nas, good question. I’ll send them our post exchange here (about recruiting). Thanks again.

demografx · « **Reply #19 on:** June 20, 2019, 06:08:12 PM »

Quote from: 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

Re-posted. The term “IRB” is used frequently.

News:

Author Topic: POIS NORD RESEARCH STUDY (Read 147047 times)