Author Topic: Important Announcement About the Rutgers / NORD Study  (Read 37622 times)

Disaster

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Re: Important Announcement About the Rutgers / NORD Study
« Reply #20 on: March 28, 2017, 09:59:08 AM »
I think we should look at this as an opportunity to start fresh.  The key as I see it is testing as many chemical as possible in as many subjects as possible and comparing that to healthy groups. These chemicals should be tested before, during arrousal and after O. An ultrasound of the prostate, lymph, testicles or other organs involved before during and after O should also be considered.

The new study needs to be exploratory and without any theory involved. There researchers have to go in and test as many avenues as possible for the least amount of money. Any targeted research will be looking at one piece of straw in a whole haystack. If they look at a range of 20 hormones for example before, during and after O. Then we can eliminate 20 things from the study instead of just one.  That's really important in trying to narrow this down.. blood sample and ultra sounds are pretty inexpensive as far as testing costs. The real cost will be in paying the researchers to plan this out correctly. I have seen $100,000 tests go to shit because the researchers mishandled the blood samples.. again the good thing is less samples equals less cost. And to start out you start small with around 20 participants. If they find something in the study then we move too 100 participants or more and that will cost around $100,000 but at least we will know we are on to something..
POIS sufferer for over 3 decades. Has progressively gotten worse over the years and I became completely disabled around 2011. My case of POIS is very severe.

demografx

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Re: Important Announcement About the Rutgers / NORD Study
« Reply #21 on: March 28, 2017, 12:19:03 PM »



Personally, I am against any legal action, and not just because it might be a giant waste of time & money & emotion that can be more usefully directed towards...curing POIS! 

Right now we have FRIENDS -- at NORD and with Dr Komisaruk, although it might not be evident to you at this very difficult time that we are all going through. And at this critical time in a cash-and-staffing-strapped forum trying to cure a rare disorder without Government grants, we NEED friends! Keep in mind that I have spent countless hours with these people and I firmly believe their efforts towards us are genuine and sincere. They want to help us! I'm sure you all know there is no profit motive.

I've also been through some very tough times in my career where I DID take legal action, so I'm not naive.

Quantum covered the information below in his OP, but maybe this email below from Allison will help you see the flavor of their feelings toward us at NORD (Quantum posted Dr K's letter to NORD in his OP, which -- to me -- shows Dr Komisaruk's continuing thoughtfulness towards us).

Further, Quantum is spearheading an admin/mods team effort to hopefully persuade Dr Komisaruk to share some more information with us, if it's Rutgers-policy-possible. Also, I asked Dr Komisaruk if he would help me as we move forward with vagus-nerve/tVNS independent forum ideas and he said of course. I offered him consulting fees and he...declined to accept them! Free advice from a world-class consultant? Come on, let's put some of our skepticism aside for another day :)

My best wishes to all!
Demo


March 23, 2017 (the day of the bad news I received from Dr K):

Hi Demo,

I'm so glad that we were able to speak this afternoon.  As I mentioned, we at NORD are very saddened by the news about Dr. Komisaruk's study and have been discussing how to move forward so that we can continue to support POIS research.  We would be very happy to issue a new POIS request for proposals (RFP) this year so that another study can be funded as soon as possible (I am not aware of a mechanism by which the funds could be returned to donors).  According to the current timeline (subject to change), NORD plans to issue our 2017 RFPs in mid-April so that the final awardees can be announced before the end of the year.

Please let me know what you think.  Given today's difficult news, it has been very helpful to focus on our opportunity to fund a new project for such a wonderfully dedicated community.

Best,
Allison
NORD


March 28, 2017 (today):

NORD needs to coordinate some internal logistics, but I will be back in touch once I have an update to share.  Right now, I do not have a specific date for the RFP announcement, but I will let you know when the timing has been finalized so that you can plan accordingly.

Best,
Allison
NORD

On Fri, Mar 24, 2017 at 8:03 PM, demo wrote:

> Also, do you know when NORD will post the RFP?

On Mar 24, 2017, at 4:03 PM, demo wrote:
>
> Please advise the next [RFP] step.
>
> Many thanks,
> Demo

[RFP = Request For Proposal...from NORD >>  to interested POIS researchers]




« Last Edit: March 28, 2017, 11:26:45 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

Limejuice

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Re: Important Announcement About the Rutgers / NORD Study
« Reply #22 on: March 28, 2017, 06:30:29 PM »
What incredibly unfortunate news... shocking....

We are all crushed by this announcement as this is the worst possible 'outcome' that a study could 'reveal'... nothing. Our most important asset that we've invested has been wasted, which is our time.

As strong individuals we need to take action and do something (instead of wait patiently more). Reading this announcement should have impacted you, and we need to use that as motivation to move forward, as others have said.

Demo, disaster, poisse, TTP, daveman, and lapoisse are motivated and taking action/planning/giving ideas. Step up.

We won't give up.

« Last Edit: March 28, 2017, 06:34:31 PM by Limejuice »

demografx

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Re: Important Announcement About the Rutgers / NORD Study
« Reply #23 on: March 28, 2017, 08:46:46 PM »



Many thanks, Limejuice!!


« Last Edit: March 29, 2017, 12:47:02 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: Important Announcement About the Rutgers / NORD Study
« Reply #24 on: March 28, 2017, 09:48:21 PM »



Just a part of "our staff" at NORD -- they rigorously & competitively screen & select our POIS researchers & monitor their study progress & results, requiring very detailed reports for their review (we only see a public summary -- until it's published) and they also control $taged payment$ to the awardees -- based on the researchers' performance. At each major interval/step of the research process -- from start to finish. Meticulous!

And...extremely hard for us to duplicate!

NORD's Scientific and Medical Advisory Committee: Known as "MAC" --

The NORD Medical Advisory Committee ["MAC"] is comprised of physician/researchers who share their experience and expertise on behalf of patients [e.g., POISers] and families affected by rare disorders like ours.

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
https://www.kedrion.com

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
http://www.mhaffner.com

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.
https://www.icc-hc.com

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
« Last Edit: March 29, 2017, 12:32:27 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

Hoping

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Re: Important Announcement About the Rutgers / NORD Study
« Reply #25 on: March 28, 2017, 11:34:17 PM »
Wow. Such shocking and disheartening news. What an unexpected bombshell, and right as we were about to cross the finish line.

There's been some conversation about conducting our own RFP and/or research efforts. I'm hesitant to do this. Although the study fell through, which is pretty devastating, let's not lose sight of the fact that it was incredibly promising. Rutgers is a world-class research university, and Dr. K is an expert in orgasmic response. The fact that NORD was able to facilitate that relationship speaks to the power of using them. I say we stick with them. Plus, they owe us one now don't they?? Demo- what do you think about scheduling a conference call among POISers to strategize a bit? Stay strong everyone!
Experienced POIS since 2002.
My symptoms include: brain fog, depression, physical and mental fatigue, memory problems, social anxiety, concentration problems, myalgia, inflammation.

demografx

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Re: Important Announcement About the Rutgers / NORD Study
« Reply #26 on: March 29, 2017, 12:09:37 AM »


Many thanks, Hoping!! I'll bring up your suggestion with admin/mods!

Best,
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

demografx

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Re: Important Announcement About the Rutgers / NORD Study
« Reply #27 on: March 29, 2017, 10:20:09 AM »

...Quantum is spearheading an admin/mods team effort to hopefully

persuade Dr Komisaruk [ edit: AND NOW NORD ] to share some more information with us, if it's Rutgers-[ AND-NOW-NORD ]-policy-possible...

« Last Edit: March 29, 2017, 11:12:53 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: Important Announcement About the Rutgers / NORD Study
« Reply #28 on: March 29, 2017, 10:33:02 AM »

On Mar 29, 2017, at 7:39 AM, Barry Komisaruk wrote:

Dear Demo,

I will ask our IRB if it is ok to provide you with the summary of the questionnaire results.
Please remind your folks that it was because of a complaint, which after an exhaustive investigation the IRB concluded that it was “unfounded”, that the project had to be suspended..
Barry
 
Barry R. Komisaruk, Ph.D.
Distinguished Professor, Psychology
Rutgers Univ Bd of Gov Distinguished Service Professor
Adjunct Professor, Radiology
Rutgers University - Newark
Smith Hall, Rm 327a
101 Warren Street
Newark, NJ 07102


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

Quantum

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Re: Important Announcement About the Rutgers / NORD Study
« Reply #29 on: March 29, 2017, 11:04:57 AM »

On Mar 29, 2017, at 7:39 AM, Barry Komisaruk wrote:

Dear Demo,

I will ask our IRB if it is ok to provide you with the summary of the questionnaire results.
Please remind your folks that it was because of a complaint, which after an exhaustive investigation the IRB concluded that it was “unfounded”, that the project had to be suspended..
Barry
 
Barry R. Komisaruk, Ph.D.
Distinguished Professor, Psychology
Rutgers Univ Bd of Gov Distinguished Service Professor
Adjunct Professor, Radiology
Rutgers University - Newark
Smith Hall, Rm 327a
101 Warren Street
Newark, NJ 07102


Good news, Demo.  At least we may recover some information from the Rutgers project.  That was the largest survey ever done with POIS sufferers, so that would be useful data.

You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

demografx

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Re: Important Announcement About the Rutgers / NORD Study
« Reply #30 on: March 29, 2017, 11:13:57 AM »

On Mar 29, 2017, at 7:39 AM, Barry Komisaruk wrote:

Dear Demo,

I will ask our IRB if it is ok to provide you with the summary of the questionnaire results.
Please remind your folks that it was because of a complaint, which after an exhaustive investigation the IRB concluded that it was “unfounded”, that the project had to be suspended..
Barry
 
Barry R. Komisaruk, Ph.D.
Distinguished Professor, Psychology
Rutgers Univ Bd of Gov Distinguished Service Professor
Adjunct Professor, Radiology
Rutgers University - Newark
Smith Hall, Rm 327a
101 Warren Street
Newark, NJ 07102


Good news, Demo.  At least we may recover some information from the Rutgers project.  That was the largest survey ever done with POIS sufferers, so that would be useful data.


Thank you, Quantum, for being so pro-active with initiating that request!


« Last Edit: March 30, 2017, 11:43:42 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

LAPOISSE

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Re: Important Announcement About the Rutgers / NORD Study
« Reply #31 on: March 29, 2017, 03:07:23 PM »
Questionaire ? They havent done anything else ?
Hrv test results would be usefull to find out if there is someting more to dig in that direction

LAPOISSE

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Re: Important Announcement About the Rutgers / NORD Study
« Reply #32 on: March 29, 2017, 03:17:44 PM »
Just an other idea..without going until a class action, we could maybe use the fact that we could just make our story with Rutger public as a leverage to get some information about the study..its not like it had just began..normally it should be completed and with a result ; remember : is POIS a form vagus nerve dysfonction(or something like that)? I really dont understand what make them abandon the study..i believe there is much more than what they told us..anyway they have a reason but the least they can do is help us.Its simple compensation for 3 years lost and the loss of oportunity for us.

demografx

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Re: Important Announcement About the Rutgers / NORD Study
« Reply #33 on: March 29, 2017, 07:37:08 PM »
Questionaire ? They havent done anything else ?
Hrv test results would be usefull to find out if there is someting more to dig in that direction


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: Important Announcement About the Rutgers / NORD Study
« Reply #34 on: March 30, 2017, 11:33:33 AM »
Repeated/elaborated information: some forum members still don't understand why Rutgers terminated the Study.


**NEVER in the history of Rutgers (or NORD) has a Study participant claimed (oddly, only after 8 full months lapsed since his participation!) that he was "damaged" by the Study. A shock, major annoyance and unanticipated cost -- to senior staff and administration at Rutgers.

**Rutgers launched a 10 month investigation - which could have easily undermined its longstanding reputation for patient safety in the public eye - to only find out that the POISer's complaint was... "unfounded".

This investigation stopped our POIS Study dead in its tracks.

**Dr Komisaruk was instructed to put a first-time-ever change in his Study protocol - never having to do that in all his decades as a researcher. In order to prevent another rare disaster like this.

**Dr Komisaruk - with all his clear compassion for POISers as well as a lifelong professional dedication to ease orgasmic-related suffering - determined that he is simply not equipped to look at new participants again for "underlying clinical issues" which could cause the same bizarre behavior. As he stated, he is an academic researcher -- not a clinician. He is simply not ready to change his entire modus operandi for this one (in 10,000) rare occurrence.

If it were me, I would have done the same.
Demo


« Last Edit: April 02, 2017, 11:49:25 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

mellivora

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Re: Important Announcement About the Rutgers / NORD Study
« Reply #35 on: March 30, 2017, 05:23:12 PM »
This is real 'kick us while we're down' type stuff.   We put a lot into this: time, energy and  substantial personal finances.  I'm flattened by POIS itself right now and in the midst of a particularly difficult time for me regardless so won't comment more. There's a lot about this news that is not ok.  Thanks to those making efforts to retrieve Dr K's data and findings - essential.

demografx

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Re: Important Announcement About the Rutgers / NORD Study
« Reply #36 on: March 30, 2017, 08:25:04 PM »
Mellivora, hope you feel better soon!
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

demografx

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Re: Important Announcement About the Rutgers / NORD Study
« Reply #37 on: March 30, 2017, 10:40:10 PM »

...we could just make our story with Rutger [sic] public as a leverage...


Leverage? That "story" would make us -- POISCenter -- look bad.

Rutgers did nothing wrong.

Remember, it was our POIS forum member, who was found to complain of Rutgers' "damages" -- with no real cause -- that resulted in our POIS project being terminated.

That kind of reporter's researched & published "story", i.e., negative POISCenter publicity -- could make qualified POIS researchers...avoid us.

We would look foolish.


« Last Edit: April 02, 2017, 11:47:05 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

b_jim

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Re: Important Announcement About the Rutgers / NORD Study
« Reply #38 on: March 31, 2017, 03:12:03 AM »
He didn't sign a document to accept potential risks during the study ?
::
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demografx

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Re: Important Announcement About the Rutgers / NORD Study
« Reply #39 on: March 31, 2017, 07:43:29 AM »
b_jim, he is only an employee of the university, not an independent, freelance researcher. I'm sure he checked his legal department before terminating us. Or has done this before with no problem.


« Last Edit: March 31, 2017, 07:49:30 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