Author Topic: NORD Interim Report for POIS Study (Read 288086 times)

demografx · « **Reply #340 on:** December 10, 2016, 01:35:29 AM »

https://rarediseases.org/senate-passes-landmark-21st-century-cures-act/#utm_source=PolicyAlert_21stCC_Dec7&utm_medium=email

Quote from: COLM_2 on December 07, 2016, 03:50:36 PM

Trump will probably scrap that ;-(

Let's hope not!

Demo

demografx · « **Reply #341 on:** December 10, 2016, 03:38:11 AM »

In spite of the delays, I think we have already benefited enormously since the beginning of our involvement with Stef, NORD, and Rutgers.

The fact that the world-renowned orgasm scientist Dr. Barry R. Komisaruk (selected competitively by NORD) studied POIS in and of itself is a POIS breakthrough!

The exciting possibility of tVNS working for POIS is already a dramatic benefit from Dr Komisaruk's thinking in depth about POIS in order to win the NORD grant, along with The Rutgers fMRI Orgasm Lab, distinguished Rutgers faculty and the Rutgers U. Medical team.

Having put 2 & 2 together -- from his extensive knowledge of orgasm-as-science, Dr K et al gave us the benefit of looking at the vagus nerve as a possibly high likelihood of being a major POIS culprit.

We have already begun very serious investigation and some of us might meanwhile explore -- SAFELY -- some of the implications of Dr Komisaruk's POIS theory.

Such as COLM aka COLM_2, has done in a recent thread, very interesting! :
http://poiscenter.com/forums/index.php?topic=2387.msg20106#msg20106 plus a thread with Quantum & me discussing devices sold at retail checkout.

Be careful, everyone!
(No matter what you try)

Dirkstar · « **Reply #342 on:** December 14, 2016, 01:10:52 PM »

I note NORD does not yet list POIS in their rare diseases database :/

https://rarediseases.org/?s=P&post_type=rare-diseases

Quantum · « **Reply #343 on:** December 16, 2016, 09:58:29 AM »

Quote from: Dirkstar on December 14, 2016, 01:10:52 PM

I note NORD does not yet list POIS in their rare diseases database :/

https://rarediseases.org/?s=P&post_type=rare-diseases

You are right, Dirkstar, and that is a bit disappointing. But NORD have changed their rules concerning the listings, and they have very strict requirements for what they call a "report" for their Rare Diseases Database. I have read their 14 pages writing requirement guide, and I estimate it take could take up to about 40 hours of dedicated work to come up with a report that will be accepted ( my feeling is a fairly acceptable report made from 10 to 20 hours of work will be met by some demands for modifications and improvement by their reviewers).

We have to choose our battles, because this forum do not have much resources in terms of available hours of work, so we have to focus on what's the best things to do.

For me personally, I think that keeping this forum alive and focusing on a better understanding of the cause of POIS and how to relief POIS, and also keep it friendly and well-running, is important, and that is where I put my spare time for now. I have also talked about my project for a poiscenter wikipedia page, and I think this would bring more awareness than a listing on NORD site, because wikipedia is much more visited ( but this is a very long term project). There are communications to do with NORD about the research, and Demo si working a lot on this, as well as his usual lively presence on the forum. Everyone in the moderator team is doing all they can to help the POIS cause.

If a group of members is willing to work on this report as a project, than may become possible to write this report. Anyone interested to do so can manifest himself and for the help of ther members. But typically, POIS sufferers do not have that much spare time to put on projects needing cognitive and other personal resources - we have to keep our life going, either on the personal and on the professional side. We usually have to work hard in order to compensate for the chunks of time we lose to POIS, so before launching a project like this, we have to be sure that it will pay off in the long run.

For now, I do not feel this report is a top priority, considering the time it would need, and the expected results.

What do you think?

Hoping · « **Reply #344 on:** December 27, 2016, 09:37:32 AM »

Quote from: demografx on December 10, 2016, 03:38:11 AM

In spite of the delays, I think we have already benefited enormously since the beginning of our involvement with Stef, NORD, and Rutgers.

The fact that the world-renowned orgasm scientist Dr. Barry R. Komisaruk (selected competitively by NORD) studied POIS in and of itself is a POIS breakthrough!

The exciting possibility of tVNS working for POIS is already a dramatic benefit from Dr Komisaruk's thinking in depth about POIS in order to win the NORD grant, along with The Rutgers fMRI Orgasm Lab, distinguished Rutgers faculty and the Rutgers U. Medical team.

Having put 2 & 2 together -- from his extensive knowledge of orgasm-as-science, Dr K et al gave us the benefit of looking at the vagus nerve as a possibly high likelihood of being a major POIS culprit.

We have already begun very serious investigation and some of us might meanwhile explore -- SAFELY -- some of the implications of Dr Komisaruk's POIS theory.

Such as COLM aka COLM_2, has done in a recent thread, very interesting! :
http://poiscenter.com/forums/index.php?topic=2387.msg20106#msg20106 plus a thread with Quantum & me discussing devices sold at retail checkout.

Be careful, everyone!
(No matter what you try)

Well said!

demografx · « **Reply #345 on:** December 27, 2016, 09:41:28 AM »

Thank you, Hoping, best wishes for the holidays!
Demo

demografx · « **Reply #346 on:** December 28, 2016, 09:56:48 PM »

On Dec 28, 2016, at 5:48 PM, Barry Komisaruk wrote:

Dear Demo,

Thank you! I wish you and yours a joyful, and especially healthy, new year.

Sincerely,
Barry

Barry R. Komisaruk, Ph.D.
Distinguished Professor of Psychology
Bd of Governors Dist Service Professor
Adjunct Professor of Radiology
Rutgers University – Newark

From: "demografx"
Date: Wednesday, December 28, 2016 at 6:13 PM
To: Dr Komisaruk
Subject: Best wishes from POIS

Demo

Habibou · « **Reply #347 on:** January 22, 2017, 10:23:00 AM »

That's nice we have some news from Ph Komisaruk at least

Do we have some more updates regarding the release date of the study, 4th report and final report?

demografx · « **Reply #348 on:** January 22, 2017, 03:35:31 PM »

Thanks, Habibou!

We don't have specifics yet. We do know that the study is still in process and will let all of you know specifics as soon as we know them.

Best wishes, and thank you for being such a great forum supporter!

FloppyBanana · « **Reply #349 on:** February 05, 2017, 09:56:15 AM »

Hi Demo,

It would be good if we could updates at regular intervals. Just a small update once a month would be appreciated.

Thanks - FB

Quantum · « **Reply #350 on:** February 05, 2017, 10:33:12 PM »

Hi FB,

Demo has not been well this week but is recovering now. So don't be surprise if there is no fast reply for now, which is not usual with Demo - his dedication to this forum is incredible !

demografx · « **Reply #351 on:** February 06, 2017, 06:17:21 PM »

Thank you, Quantum!

demografx · « **Reply #352 on:** February 06, 2017, 06:22:07 PM »

Quote from: FloppyBanana on February 05, 2017, 09:56:15 AM

Hi Demo,

It would be good if we could updates at regular intervals. Just a small update once a month would be appreciated.

Thanks - FB

Thank you, FB!

I sent your post to NORD and just now received this reply:

"Demo,

Thank you for sending this feedback from the forum. I will share this request with the NORD team so that we can discuss how best to move forward.

I hope that you are feeling better after your surgery! [I just recently had a serious fainting spell, scared the ---- out of my wife, rushed to the ER, then they implanted a pacemaker. I am LUCKY!!! -- demo]

Best,
Allison"

[NORD]

Mr Raba · « **Reply #353 on:** February 07, 2017, 12:08:31 PM »

Wow Demo. That is a lot of excitement. Glad u are back, but please take care.

demografx · « **Reply #354 on:** February 07, 2017, 10:03:19 PM »

Quote from: Mr Raba on February 07, 2017, 12:08:31 PM

Wow Demo. That is a lot of excitement. Glad u are back, but please take care.

Thank you, Mr Raba!

joelawerence · « **Reply #355 on:** February 08, 2017, 04:21:27 AM »

Quote from: demografx on February 06, 2017, 06:22:07 PM

Quote from: FloppyBanana on February 05, 2017, 09:56:15 AM
Hi Demo,

It would be good if we could updates at regular intervals. Just a small update once a month would be appreciated.

Thanks - FB

Thank you, FB!

I sent your post to NORD and just now received this reply:

"Demo,

Thank you for sending this feedback from the forum. I will share this request with the NORD team so that we can discuss how best to move forward.

I hope that you are feeling better after your surgery! [I just recently had a serious fainting spell, scared the ---- out of my wife, rushed to the ER, then they implanted a pacemaker. I am LUCKY!!! -- demo]

Best,
Allison"

[NORD]

Woah, that's really scary. Hope you recover soon! Please take rest and don't bother logging into the forum for a few days till you are better.

Just out of curiosity, do you know if the TRT had any role in this?

demografx · « **Reply #356 on:** February 08, 2017, 12:00:43 PM »

Thanks, joelawerence! As far as I know TRT wasn't in the picture, but who knows? Since my open heart surgery in 2009 (5-way bypass), my GP has
not been thrilled with my TRT regimen. Thanks for bringing that up!

And please don't worry (but thank you) about my logging in here, it's therapeutic

LAPOISSE · « **Reply #357 on:** March 08, 2017, 02:48:58 PM »

Hello All...

I just wonder if anybody have a new about the final report which as I know was supose to be ready 6 month ago...??

For me its quite surprising that we dont have any news...we paid for that study and the minimum is to give us some update considering they are late.
For me either, they had intersting result and need more time to work on it(but in that we be informed of further investigation, need dor guinea pig, more funds, ets) or they just dont care about it and dont take the time to write down the 5 pages final report.

Both case, its not really serious

demografx · « **Reply #358 on:** March 12, 2017, 11:15:10 AM »

https://www.scientificamerican.com/article/the-neuroscience-of-heart/

In Stef's post -- http://poiscenter.com/forums/index.php?topic=2086.45
-- which summarizes an early interim report, Dr Komisaruk discusses HRV (heart rate variability) and how it might relate to POIS.

This article seems to explain HRV in clear language.

Another thread about HRV from here, started by b_jim, and where Quantum also gave detailed information about HRV and its measurement as well:

http://poiscenter.com/forums/index.php?topic=2179.msg17607#msg17607 .

demografx · « **Reply #359 on:** March 12, 2017, 06:12:04 PM »

Quote from: LAPOISSE on March 08, 2017, 02:48:58 PM

Hello All...

I just wonder if anybody have a new about the final report which as I know was supose to be ready 6 month ago...??

For me its quite surprising that we dont have any news...we paid for that study and the minimum is to give us some update considering they are late.
For me either, they had intersting result and need more time to work on it(but in that we be informed of further investigation, need dor guinea pig, more funds, ets) or they just dont care about it and dont take the time to write down the 5 pages final report.

Both case, its not really serious

Hi, LAPOISSE,

Thank you! I sent your very well-considered concerns over to NORD, and I just now received an immediate reply:

March 9, 2017:

"Demo,

The delay with this project is not due to apathy, but rather the great care being taken to ensure that the research is conducted according to the highest scientific and ethical standards. I hope that that will be evident in the future progress reports, but I recognize that this does not necessarily make the wait any easier. Please know that, according to NORD's grant policy, final payment is not made to a researcher until the final reports have been received by NORD and approved by NORD's Medical Advisory Committee.

Best,
Allison,
NORD"

News:

Author Topic: NORD Interim Report for POIS Study (Read 288086 times)