Author Topic: Rutgers Research Announcement  (Read 26897 times)

Stef

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Re: Rutgers Research Announcement
« Reply #20 on: April 04, 2014, 11:59:06 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

Hi Prancer!

Demo is referring to previous female orgasm studies, conducted by Dr. Komisaruk and his team. They would have required approval by the Rutgers IRB Committee. 

Those studies were conducted over the past few years, and would each have had to go through the same rigorous IRB review process as the POIS study is now going through. If more female orgasm studies are funded for future research at Rutgers, they'll need new IRB committee approval.

IRB committee delays are very frustrating and aggravating for all involved -- but they are of the utmost importance! IRBs (referred to as "Ethics Committees" outside the US) can ultimately improve a study's design, and even occasionally find other financial resources within the medical institution to further help with the research. These delays are generally the same everywhere, within the US and overseas. 

(*If any researcher claims to be conducting a study involving humans -- but also claims that IRB approval isn't/wasn't necessary -- that's a RED LIGHT! Don't believe that researcher...and run in the opposite direction!)

I hope that explains the misunderstanding here -- there's no difference in IRB approval requirements for male vs female.

Stef

Prancer

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Re: Rutgers Research Announcement
« Reply #21 on: April 04, 2014, 02:45:38 PM »
Ah great, that makes a lot more sense now! Thanks for your clarification Stef!

demografx

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Re: Rutgers Research Announcement
« Reply #22 on: April 04, 2014, 08:30:36 PM »
I'll get it right one of these days, Prancer!  ;D
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 #23 on: April 04, 2014, 09:28:16 PM »
Stef, this is further evidence that we would've never accomplished this without your superskilled and loving guidance! :)

« Last Edit: April 04, 2014, 09:31:39 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

Daveman

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Re: BEYOND RUTGERS-KOMISARUK
« Reply #24 on: April 07, 2014, 10:59:24 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.

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 !

Hi Colm,

Sorry, I have become incredibly busy in my "private life". I don't get the opportunity to interact as much as I would like. Just maintenance alone on the site takes a good bit into any spare time that I might have available.

And, it does not reflect a disinterest in the goings on in the forum either....

I hear your point loud and clear. I too am often tempted to venture into other branches of investigation, but one thing always (for the time being) comes to the surface every time I may have a doubt o feel a need to move any investigation onto a different path.

That thing that comes to the surface is a question: "WTF do I know?"

I may feel that one way or another is better. And we all feel that their one certain pet theory, is really the right one. But we chose this path with NORD to get started, precisely because it was obvious that we didn't have a clue. Five+ yrs. saying: "what about this, or what about that?". In those years, some things looked like they had promise, but turned out to be flops, or some things worked for some and not for others. SOme theories were actually dangerous.

The idea to fly with perhaps a runner up may be a good one, but it's  quite a different thing to work with someone who has decades of research program administration, than it is to run and take charge of a program by yourself.

So the general idea is, "let's get the ball rolling" get off to a start, see how a program is administered, and then see if there isn't a way to complement the results or follow up with a second parallel program, depending on how the first one goes.

There will have to be a benefit to this first program, one way or another, even if that be just that POIS can be defined is real.

We could get anything from:
"Yes, POIS is as a result of excessive or adverse stimulation of the vagus nerve, and that happens because of "such and such" mechanism", through
"It's not caused ny the vagus nerve, but it is eveident that the vagus nerve is affected, and this causes "such and such" of the symptoms of POIS" to
" The vagus nerve isn't involved at all, but fMRIs of patients and nonpatients demonstrate that POIS produces influences in patients that nonpatients don't experience.

Hypothetical...  but the principal aim of the NORD investigation is to establish a credibility, if nothing else, in the fact that POIS is real.

My feel is perhaps closer to the second case, where they may find that the vagus nerve is not the root cause, but is affeceted by POIS. I am certain of this.

I recently had a vagus incident. There was a stomach virus in my area recently, and I don't remember the exact name of "what happened" to me, but it was clasified as a vagus reaction to excessive stimulation caused by the virus. It helped me realize how involved the vagus nerve IS in our system. This same reaction has happened to me once or twice a year (in the past two years).

It usually leaves me unconscious with very low blood pressure. Not a typical POIS symptom, but since my POIS has been with me longer now, I see that I am more sensitive to things that can upset the vagus balance.

Anyways. I feel that from here we have somewhere to go. We should certainly undertake more fundraising, and perhaps consider taking on research where we have a little more control. But I would really like to feel that we can effectively use that control... as lay-people, it is really complicated to try and take on that responsibility.

BTW, NORD cannot release nor confirm who the 2nd and 3rd runners up were. There may be a point at which such information could be available less directly once, the process has moved forward, I don't know.

Don't know if any of this helps. We just have to trust the system for now.

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!

Nightingale

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Re: Rutgers Research Announcement
« Reply #25 on: April 07, 2014, 02:05:39 PM »
Quote
That thing that comes to the surface is a question: "WTF do I know?"

Thank you. Thank you. Thank you.

Stef, thanks for answering. Science moves carefully (read: slowly) because it has to. The issue we are dealing with is unknown, which if you think about how much we have learned about the world and the human body is exactly why we are suffering from what is considered a "rare disease". 

What if we ended up raising even more money (a very hard thing to do, which we all saw), started a study that had another approach, only to have Dr. K's research discover the exact problem (perhaps because he was indeed the #1 guy for the job?) That would be financially and emotionally draining.

I've been waiting to be "cured" my whole conscious life, and I've learned that with my circumstances, I've got to be prepared to live with this for the rest of my life. And I AM living with POIS! I am living a life that is nothing like what I dreamed of as a child, but it is life nonetheless. I can still find joy in existence with POIS. So even if this study doesn't change my life, or the next or the next after that, I've made plans to live through it. And it does involve being extremely KIND to myself, as well as being my own boss. I have no wife, I have no high pressure job. This is intentional. I can't do it with POIS. I live near my parents, I work part time and don't make much money. Maybe I'm lucky, but I'm living a spartan lifestyle that lets me take a breath and live while I've got the chance. I could get killed in a car accident tomorrow, but I'm living for today so it doesn't really bug me. I can't live for that day when I'm finally cured, because I won't be living for what I have today.

I just hope I can impart some good vibes out to everyone, because I've been through so much anguish in my relatively short life to have learned that it's not worth agonizing over glimmers of possibilities. I'm not saying it's futile to try and beat all this and that you shouldn't fight, we all should and are. But we are fully capable of being our own personal torturer. I first had to survive depression and mental illness to get to the point where POIS is my biggest problem. It used to be that I was just trying to get past wanting to kill myself. A big lesson I learned is that I have such power to put myself into either positive and fulfilling circumstances, or to make things worse and tougher.  I've made some "radical" choices that allow me to take a bad day (today I'm dealing with poor cognitive function as the result of eating the wrong kind of sugar) and have the time to recover from it.

At this point, my dream used to be I'd have a degree or two, a wife, an important job and maybe a kid. None of that has happened, but I've learned to let go and discover dreams I CAN achieve. And to do that on my terms is what I live for :)

KEEP HOPE ALIVE
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.

Chris

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Re: Rutgers Research Announcement
« Reply #26 on: April 26, 2014, 04:59:33 AM »
Hey Demo & Daveman, sorry if i'm being a little indiscreet here, but i was hoping to know if we have any news for the research and from Dr. Komisaruk team. It's been quite a while since i heard any word from them and i'm starting to get a little worried. I know we have to wait for the committe's approval but it's a few months now since the announcemet of the research winning team came out and i have'nt seen any notable interaction between us. I'm not sure for you, and for the other guys in the forum (i believe so), but i think about it a lot & especially when i go to bed to sleep, and it upsets me a lot that we don't hear much for any progress. I don't know maybe things are different in the backscenes, maybe you communicate more with the team but aren't too important for us to know but is there any updates or something ?
Again sorry if i cause any inconvenience.

demografx

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Re: Rutgers Research Announcement
« Reply #27 on: April 27, 2014, 02:00:46 PM »
The most recent reply from Rutgers:

On Apr 25, 2014, at 12:28 PM, Barry Komisaruk <brk@psychology.rutgers.edu> wrote:

Dear Demo and Daveman,

We are obtaining the equipment and getting ready to submit the irb application.

Barry
Barry R. Komisaruk, Ph.D.
Distinguished Professor, Dept. Psychology
Adjunct Professor, Dept. Radiology
Board of Governors Distinguished Service Professor
Rutgers, The State University of New Jersey
Smith Hall, Room 327A
101 Warren Street
Newark, New Jersey 07102

phone:  973-462-0178 (mobile)
       973-353-3941(work)
fax:    973-353-1171

On 4/25/2014 10:29 AM, Demo wrote:

Hello, Dr. Komisaruk,

We hope all is well with you and your staff.

Please advise:

Has significant progress been made toward commencing the POIS study?
Is there an estimated start date for the study?
We look forward to your response.

Sincerely,

Demo and Daveman  
--------------------------------------------------------

Please note:

Dr K said it's ok for individual members to email him, so feel free to do so (his email is at the beginning of this post) -- please share your replies here if it's not too confidential and can help other members!

Although Dr. K. was short in his answer,  we got the feeling that the pay off of the whole process is to develop details of the actual program.

We imagine that's the case,  otherwise how is he going to get any kind of approval if he can't specify exactly what and how he is going to do it.

We imagine that involves now more than  just a "general plan".

How will the test groups be organized? What will their characteristics be?  What tests will he do?  What results are expected? How will the tests change as results change?

Etc. Etc.

So that is a lot more now than just asking for Rutgers' permission.  Then there's interaction.  If the board doesn't like something,  he must go in and change the plan.

Best wishes to all of us!

Demo and Daveman
« Last Edit: April 27, 2014, 09:48:44 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: Rutgers Research Announcement
« Reply #28 on: April 29, 2014, 09:03:58 PM »

The most recent reply from Rutgers:

On Apr 25, 2014, at 12:28 PM, Barry Komisaruk <brk@psychology.rutgers.edu> wrote:

Dear Demo and Daveman,

We are obtaining the equipment and getting ready to submit the irb application.

Barry
Barry R. Komisaruk, Ph.D.
Distinguished Professor, Dept. Psychology
Adjunct Professor, Dept. Radiology
Board of Governors Distinguished Service Professor
Rutgers, The State University of New Jersey
Smith Hall, Room 327A
101 Warren Street
Newark, New Jersey 07102

phone:  973-462-0178 (mobile)
       973-353-3941(work)
fax:    973-353-1171

On 4/25/2014 10:29 AM, Demo wrote:

Hello, Dr. Komisaruk,

We hope all is well with you and your staff.

Please advise:

Has significant progress been made toward commencing the POIS study?
Is there an estimated start date for the study?
We look forward to your response.

Sincerely,

Demo and Daveman  
--------------------------------------------------------

Please note:

Dr K said it's ok for individual members to email him, so feel free to do so (his email is at the beginning of this post) -- please share your replies here if it's not too confidential and can help other members!

Although Dr. K. was short in his answer,  we got the feeling that the pay off of the whole process is to develop details of the actual program.

We imagine that's the case,  otherwise how is he going to get any kind of approval if he can't specify exactly what and how he is going to do it.

We imagine that involves now more than  just a "general plan".

How will the test groups be organized? What will their characteristics be?  What tests will he do?  What results are expected? How will the tests change as results change?

Etc. Etc.

So that is a lot more now than just asking for Rutgers' permission.  Then there's interaction.  If the board doesn't like something,  he must go in and change the plan.

Best wishes to all of us!

Demo and Daveman
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 #29 on: May 04, 2014, 05:34:18 PM »
Anticipated Start Date
POIS Research at Rutgers
July, 2014

Per Dr Komisaruk email today.


Daveman and 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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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 #31 on: August 02, 2014, 02:18:26 PM »


On Aug 2, 2014, at 8:52 AM, "Barry R. Komisaruk" <brk@psychology.rutgers.edu> wrote:

Dear All,

The Rutgers IRB panel meets on September 3, so I should have word shortly
thereafter if the protocol is approved.  I will keep you posted as soon as
I hear.

Barry

Barry R. Komisaruk, Ph.D.
Distinguished Professor, Dept. Psychology
Adjunct Professor, Dept. Radiology
Board of Governors Distinguished Service Professor
Rutgers University
Smith Hall 327A
101 Warren Street
Newark, NJ 07102

phone (office): 973 353 3941
phone (mobile): 973 462 0178
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