Author Topic: Rutgers Research Announcement  (Read 28455 times)

plakshmin

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Rutgers Research Announcement
« on: January 11, 2014, 10:29:08 AM »
The research group at Rutgers University-Campus at Newark has just received a grant from the National Organization of Rare Diseases (NORD) to characterize the physical and cognitive symptoms of POIS and test for possible vagus nerve involvement. Upon making all the necessary preparations for the study (which will take approximately 2 months) we will post here a detailed description of the research procedures and a
consent form for your possible participation. In the meantime, if you have questions, please feel free to contact us.

Pooja Lakshmin, MD plakshmin@psychology.rutgers.edu

Barry R. Komisaruk, Ph.D. brk@psychology.rutgers.edu


« Last Edit: January 20, 2014, 09:00:54 PM by demografx »

demografx

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Re: Rutgers Research Announcement
« Reply #1 on: January 12, 2014, 08:57:37 PM »
Thank you and welcome,

Dr. Lakshmin

and

Dr. Komisaruk
                                        
                                      to

                              POISCenter



« Last Edit: January 13, 2014, 03:16:01 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

Bulbo

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Re: Rutgers Research Announcement
« Reply #2 on: January 13, 2014, 07:43:39 AM »
Dr Barry Komisaruk and Dr Pooja Lakshmin, our lives depend on this research. Please help us

Nightingale

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Re: Rutgers Research Announcement
« Reply #3 on: January 13, 2014, 09:36:46 PM »
Welcome, and thank you for sharing your expertise with us so that we may better understand and fight this syndrome!
Turmeric and Rosemary 30-45 minutes before orgasm for anti-inflammatory and immune support has helped me a lot. Faster and easier than niacin approach.

demografx

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Re: Rutgers Research Announcement
« Reply #4 on: January 18, 2014, 09:06:49 PM »
Thank you and welcome,

Dr. Lakshmin

and

Dr. Komisaruk
                                        
                                      to

                              POISCenter





And also Thank You and Welcome to Rutgers' POIS Study Collaborator, Ms. Eleni Frangos!




« Last Edit: January 19, 2014, 02:56:46 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

MrMoonJr

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Re: Rutgers Research Announcement
« Reply #5 on: January 26, 2014, 12:33:49 PM »
Hey. I live near Newark... I'm wondering if I should try and make contact or if someone here has contact info for any of the doctors. So I may inquire about being a participant for this very important study

demografx

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Re: Rutgers Research Announcement
« Reply #6 on: January 26, 2014, 07:04:11 PM »
MrMoonJr, they will make a specific announcement here soon, including information as to how you can participate in their POIS Research Study.

Thank you for your patience!

« Last Edit: January 26, 2014, 07:06:12 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

Rooster

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BEYOND RUTGERS-KOMISARUK
« Reply #7 on: March 25, 2014, 09:00:46 PM »
I am very grateful to everyone who contributed to this milestone.  Very, very grateful.  In did not have a chance to contribute, as I only discovered my POIS last October.  Am I the first to ask the following question?

WHAT'S NEXT?!

How can we get more studies and more funding moving?
"But, don't you think we should wait for the results of this study?"
No, I do not.  Neither am I looking past the Rutgers study in any sort of dismissive way.  In fact, I plan to participate in Dr. Komisaruk's study.
Let's do the next big thing!  Now!

Thanks again to the founders and participants in this site.  Your work gives me (and many men) strength and hope.

demografx

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Re: Rutgers Research Announcement
« Reply #8 on: March 25, 2014, 09:27:34 PM »
Rooster, I agree with your longterm thinking!

 :)
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

Defsync

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Re: Rutgers Research Announcement
« Reply #9 on: March 26, 2014, 02:42:14 AM »
Any updates from the research group coming soon?

Daveman

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Re: BEYOND RUTGERS-KOMISARUK
« Reply #10 on: March 26, 2014, 05:46:15 AM »
I am very grateful to everyone who contributed to this milestone.  Very, very grateful.  In did not have a chance to contribute, as I only discovered my POIS last October.  Am I the first to ask the following question?

WHAT'S NEXT?!

How can we get more studies and more funding moving?
"But, don't you think we should wait for the results of this study?"
No, I do not.  Neither am I looking past the Rutgers study in any sort of dismissive way.  In fact, I plan to participate in Dr. Komisaruk's study.
Let's do the next big thing!  Now!

Thanks again to the founders and participants in this site.  Your work gives me (and many men) strength and hope.


Yes, in part, further research tat we undertake will depend to some extent on Dr. Komisaruk's findings. The whol concept of the ORD funding was to undertake "seed research", basically a springboard to bigger and better things. This research MUST validate POIS at the very least. MUST show that it is real and hopefully a more specific direction to be taken in further research.

After this kind of research we are much more open to sponsored or even public financing.

That said, financing takes time and effort, so there is no reason not to start NOW. It may take another year to raise enough more to enter a second phase. By that time, we will have a more clearly defined direction.

WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

Daveman

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Re: Rutgers Research Announcement
« Reply #11 on: March 26, 2014, 05:48:29 AM »
Any updates from the research group coming soon?

We must be very close to some announcement.

We'll check.

WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

demografx

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Re: Rutgers Research Announcement
« Reply #12 on: March 26, 2014, 07:08:50 PM »
We received a reply.

Dr. Komisaruk is hard at work wrapping up the bureaucratic details necessary to begin work on POISers. (Approval so far has only been for women's orgasms).

Red tape!

PATIENCE is still needed -- sorry to say!
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

Nightingale

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Re: Rutgers Research Announcement
« Reply #13 on: March 26, 2014, 08:53:42 PM »
We received a reply.

Dr. Komisaruk is hard at work wrapping up the bureaucratic details necessary to begin work on POISers. (Approval so far has only been for women's orgasms).

Red tape!

PATIENCE is still needed -- sorry to say!

Keep up what you're doing, everyone! Seems like we are not only going to find out more about a very peculiar illness, but we are going to break down walls to research what has been considered taboo for too long. !!!

Thanks for the update Demo
Turmeric and Rosemary 30-45 minutes before orgasm for anti-inflammatory and immune support has helped me a lot. Faster and easier than niacin approach.

demografx

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Re: Rutgers Research Announcement
« Reply #14 on: March 26, 2014, 10:33:44 PM »
Thanks, guys, for your patience!!  :)

Everything is on track! (Albeit too slowly for many of us!)

 :) :)
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: Rutgers Research Announcement
« Reply #15 on: March 28, 2014, 10:22:39 AM »


IRB Committees (Institutional Review Board committees) take their time when reviewing studies.

They should take their time -- there should be no rushing, as lives may be affected by these research studies.

The main job of the IRB committee is to make sure that a study is (1) safe, (2) ethical, and (3) there's a solid medical goal. There are often lots of back-and-forth questions to the PI (Principal Investigator -- Dr. Komisaruk) from the Committee -- the questions are sent and answered via mail. Then everyone has to wait until the Committee meets again (usually once/month) to review and discuss the answers. Sometimes, more questions are generated.

If any of you is interested, here's a link to information about the Rutgers University IRB Committee -- http://orra.rutgers.edu/rutgers-irb.

For unknown reasons, NORD did not send the formal contract with details to Dr. Komisaruk until mid-February (despite knowing he was the MAC's choice for our grant award back in mid-December). So, Dr. Komisaruk and his team probably submitted their IRB paperwork shortly after mid-February.  In that sense, not much time has passed in waiting for IRB approval.

I'm sure that this waiting period for the IRB approval is very frustrating -- for both Dr. Komisaruk and for all of us!  But a few months of having to wait for IRB approval is absolutely normal. Please know that a few months for the IRB approval to come through is absolutely not a cause for concern -- but it can be vexing!

It will happen -- have NO doubts!




« Last Edit: March 28, 2014, 02:22:59 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

Colm

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Re: BEYOND RUTGERS-KOMISARUK
« Reply #16 on: March 30, 2014, 12:05:05 PM »
I am very grateful to everyone who contributed to this milestone.  Very, very grateful.  In did not have a chance to contribute, as I only discovered my POIS last October.  Am I the first to ask the following question?

WHAT'S NEXT?!

How can we get more studies and more funding moving?
"But, don't you think we should wait for the results of this study?"
No, I do not.  Neither am I looking past the Rutgers study in any sort of dismissive way.  In fact, I plan to participate in Dr. Komisaruk's study.
Let's do the next big thing!  Now!

Thanks again to the founders and participants in this site.  Your work gives me (and many men) strength and hope.

Am one of those interested in provoking a conversation here, on the back of what Rooster speaks of above and his "What's Next" comments. This is in the light of how long it appears to take in the world of validated research studies and set up phase for the current Rutgers one.

I admit my bias (on age grounds), and finding it hard not to lose hope about a cure for POIS.

Is there for instance, visibility (Stef/Daveman/DEMO) on who else was in the mix for the original NORD research grant awarded last December? Perhaps the number 2 proposer had an equally valid study, which if we knew what it was, we could discuss if there is any merit in assessing the appetite for another (valid study) round of funding.

To run this idea forward, let's say that NORD could advise us who and what number 2 / 3 thesis was, for a potential study. If it seemed equally credible to the Vagus Nerve idea, we could seek assistance then, in analysing if a parallel complementary study would also help in bringing us forward to more hope and closure to this. With the existing NORD credibility, and Dr. K's interest in studying this with us, would this NOT also open the door potentially, to some private funds, in addition to what else we could raise between the forum folks.

I would suggest of course (in this situation were it to move forward), that those who already contributed significant $'s, should not be tapped for further funding in a new round, unless they felt motivated to also do so.

I may be alone in this thinking, or Rooster or other experienced forum members might think this worth discussing.

I would be very interested if Daveman & Demo could express their immediate thoughts further here on the forum, being the two leaders. You both may be able to give clarity and categorically say this would be wise/unwise at this time, before Rutger's study completes. However, seems like this could be up to a year, at the current speed (no criticism intended-just the wheels of research studies move slowly) and this is an unusual one of course.

It feels to me anyway, pretty frustrating to think that we are moving close to unraveling the truth of POIS, and yet, seem so far way. Patience is a difficult virtue for a POISER !
« Last Edit: March 30, 2014, 12:10:20 PM by Colm »

demografx

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Re: BEYOND RUTGERS-KOMISARUK
« Reply #17 on: March 30, 2014, 08:03:23 PM »

Patience is a difficult virtue for a POISER !


Absolutely true!!!
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

Defsync

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Re: Rutgers Research Announcement
« Reply #18 on: April 04, 2014, 02:31:22 AM »
We received a reply.

Dr. Komisaruk is hard at work wrapping up the bureaucratic details necessary to begin work on POISers. (Approval so far has only been for women's orgasms).

Red tape!

PATIENCE is still needed -- sorry to say!

POIS is not an ancontrollably destructive force in womans life. They do not have nocturnal emissions of which they cannot control. I assume that enough forethought and planning is in place to ensure that no money will be spent at all if no research can be done on male patients. There is no distinguishing difference from a female orgasm vs a male orgasm other than the prejudice of a govt funded institution that would be wise to tread professionally when this large some of money is to be spent effectively in a manner that is providing them revenue.

« Last Edit: April 04, 2014, 10:14:04 AM by demografx »

Prancer

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Re: Rutgers Research Announcement
« Reply #19 on: April 04, 2014, 11:01:55 AM »
I can't believe approval has to be given separate for male and female orgasms. Defsync does have a point. Isn't that like gender discrimination or something? lol