POISCENTER
General Category => POIS Research => Topic started by: Stef on September 17, 2014, 10:14:36 AM
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Hi, All --
For those of you who will be applying for participation in Dr. Komisaruk's study, the following will be required in your initial applications:
A) A hard copy of the consent form, filled in with the requested information and signed in the appropriate spot;
B) There will be two separate questionnaires: a symptom questionnaire and a medical history questionnaire.
Dr. Komisaruk will be sending those two finalized questionnaires ASAP and we'll immediately post them on this site. Hopefully they'll arrive within the next week, at the latest.
(***Please note -- the "draft" questionnaires that were posted in early July, that had been provided to demo during his visit with Dr. K, are NOT the finalized versions of the questionnaires. We'll be posting the finalized questionnaires as soon as they're received. They are an integral part of your application.)
There may be little to no difference in the finalized, IRB-approved questionnaires -- but those approved questionnaires are what you'll need to print out, fill out, and send -- along with your signed consent form.
Completed applications are to be mailed via regular postal mail or via Fed Ex directly to Dr. Komisaruk at--
Professor Barry Komisaruk, PhD
Department of Psychology
Rutgers-The State University of New Jersey
101 Warren Street
Newark, NJ 07102
USA
Individual questions can be sent via email to Dr. Komisaruk:
brk@psychology.rutgers.edu
Best wishes,
Stef
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(http://i858.photobucket.com/albums/ab143/demografx/07A17B79-A90E-40EB-BB92-9E8C9D4A49DE.gif)
"Thank you, Stef!!!!"
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Getting my envelope ready now!
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Thanks Stef! Fortunately, the research is happening where many people live (very dense population). I bet there could be hundreds or more poisers close by. They won't have to travel very far. Some nearby poisers like daropac are getting excited & even asking about volunteering already! Nightingale's getting ready too! So fantastic. Verrrry excited!
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Wonderfully encouraging insight, Prancer!
Thank you !
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Getting my envelope ready now!
Yay !!
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Thanks Stef! Fortunately, the research is happening where many people live (very dense population). I bet there could be hundreds or more poisers close by. They won't have to travel very far. Some nearby poisers like daropac are getting excited & even asking about volunteering already! Nightingale's getting ready too! So fantastic. Verrrry excited!
Very excited. I reached out to Dr. K regarding timing as while I do live near Newark (I live in Manhattan), I work in Finance and my hours are a bit crazy. Dr. K alluded to the fact that it should not be an issue if everything else checks out on my application. I'm more than happy to help and provide as much transparency to those who can't make it to Newark as possible (to the extent it is is allowed). But yeah, pretty pumped about the news.
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Thanks Stef! Fortunately, the research is happening where many people live (very dense population). I bet there could be hundreds or more poisers close by. They won't have to travel very far. Some nearby poisers like daropac are getting excited & even asking about volunteering already! Nightingale's getting ready too! So fantastic. Verrrry excited!
Very excited. I reached out to Dr. K regarding timing as while I do live near Newark (I live in Manhattan), I work in Finance and my hours are a bit crazy. Dr. K alluded to the fact that it should not be an issue if everything else checks out on my application. I'm more than happy to help and provide as much transparency to those who can't make it to Newark as possible (to the extent it is is allowed). But yeah, pretty pumped about the news.
GREAT NEWS! :)
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THANKS ALOT ....
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I'm ready to answer and do the study... I need a time and date for this study so I can plan.
This is the tread I assume the questioner will be posted, correct?
:)
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I'm ready to answer and do the study... I need a time and date for this study so I can plan.
This is the tread I assume the questioner will be posted, correct?
:)
Yes one of us will post on this thread.
Thanks for your patience, Andy.
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Dr Komisaruk contacted Stef today and said these are ok! (Loading slowly today following this one)
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Hi All --
While demo continues his efforts to post the 4 required questionnaires, I want to mention that there will be some very brief, easy instructions about them, posted afterward.
I also think that demo has a trick up his sleeve that will enable you to print out the questionnaires. They must accompany your study applications.
Stay tuned!
Stef
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Repeat posts follow -- from "familiar place "
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[last page in Dr Komisaruk's letter, previous page]
(http://i858.photobucket.com/albums/ab143/demografx/DDCAE613-67DE-4356-A5F8-4458AC7C39DA.jpg)
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Demo deserves a huge round of applause for getting these questionnaires onto the forum. But I don't know how to post graphics here!
Just some very brief (but important) instructions re: paperwork for applying for Dr. K's study --
1) Print out the following questionnaires and fill out:
#7A ("POIS Symptoms");
#7B ("Your POIS History");
#7C (2 pages, questions 1- 21 -- ***2 pages!);
#7D ("SCL-90" -- only pages 2,3 and 4 -- 90 questions)
2) Re: #7D -- the "SCL-90" questionnaire -- only pages 2,3 & 4 are required. Please ignore the first (title) page -- it's a scoring sheet that won't be used. Dr. K. is only interested in your responses re: pages 2,3 and 4 (90 questions);
3) Print out the two pages related to the Informed Consent -- Attachment #4 (demo posted these two pages out of order -- the first page is "Informed Consent" and the second page starts with, "Research Participants Initials____")
4) Read, initial and fill out info for second page of the Informed Consent.
So -- the application consists of a minimum of 9 pages -- plus any comments written onto separate pages that you might wish to include.
You can mail the hard copies to Dr. K. (Fed Ex is probably your best bet) --
Professor Barry Komisaruk, PhD
Department of Psychology
Rutgers-The State University of New Jersey
101 Warren Street
Newark, NJ 07102
USA
Or, you can scan your completed copies and send them by email to Dr. K --
brk@psychology.rutgers.edu
I hope this is clear!!
If you're having problems printing pages out -- demo or Daveman can provide instructions. I was easily able to print these pages on my PC.
Best wishes!
Stef
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I watching. I cannot upload or download them yet, keep me informed. I'm in.
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I watching. I cannot upload or download them yet, keep me informed. I'm in.
On my iphone, I click and it prints ...
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I watching. I cannot upload or download them yet, keep me informed. I'm in.
On my iphone, I click and it prints ...
I had to copy paste, but it wked.. Gonna fill it out now. Do I mail this or email to the posted email address. What is the best way to send this information to the Docs upon completion..?
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Filled out! I'm ready. #hyperPOISmode
I am ready for health and will never stop trying for myself and my girlfriend whom I on break with now. Love is the strongest motivator I have ever experienced. I love you hun and look forward to speaking with you when you are ready even if you must leave. We can find love again guys and will. Even if it doesn't work out with relationships, never stop.
We will persevere and navigate this physical and mental minefield of a disease.
I love all of you guys and you have motivated me beyond what I thought was possible. I understand your pain.
We will do this because we must!
Be well All!
Demo, just keep me updated on where and how to send out this paper-wk cuz i will go to rutgers tomorrow if I must (you can msg me direct). I am 30miles away and familiar with the area...
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Thank you,
Andy !!!!
Thank you, Stef!!!!
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Demo, just keep me updated on where and how to send out this paper-wk cuz i will go to rutgers tomorrow if I must (you can msg me direct). I am 30miles away and familiar with the area...
Stef, is Andy ready to submit paperwork?
Andy, I just checked with Stef: YOU'RE ALL SET! PLEASE SEND YOUR PAPERWORK OR SCAN IN TO DR. K!!
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"Demo, just keep me updated on where and how to send out this paper-wk cuz i will go to rutgers tomorrow if I must (you can msg me direct). I am 30miles away and familiar with the area..."
Andy,
You can scan & email your paperwork to Dr. K. But I think the best route is mailing it to him via Fed Ex --
Professor Barry Komisaruk, PhD
Department of Psychology
Rutgers-The State University of New Jersey
101 Warren Street
Newark, NJ 07102
Please make sure you've got at least the 9 required pages filled out.
Wishing you the best, Andy. Go for it!
Stef
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"Demo, just keep me updated on where and how to send out this paper-wk cuz i will go to rutgers tomorrow if I must (you can msg me direct). I am 30miles away and familiar with the area..."
Andy,
You can scan & email your paperwork to Dr. K. But I think the best route is mailing it to him via Fed Ex --
Professor Barry Komisaruk, PhD
Department of Psychology
Rutgers-The State University of New Jersey
101 Warren Street
Newark, NJ 07102
Please make sure you've got at least the 9 required pages filled out.
Wishing you the best, Andy. Go for it!
Stef
Sending tomorrow if possible. Do I have a an ID code to list on yet, or no? I assume that is for when I show up to the study...
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Great, Andy!
I think Dr Komisaruk will assign codes.
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Andy, I just sent Dr K an email to confirm what I wrote above.
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I'm going to be mailing this tomorrow :)
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Hi Andy (and Demo!),
I did notice the space on questionnaire 7C -- the POIS History Questionnaire.
I'm sure Demo's correct -- those ID codes will be assigned by Dr. K. and his team. But let's hear what Dr. K's reply is to Demo's question to him.
Stef
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Hi, Andy & Stef (thank you for replying Stef while I was waiting for Dr K's response):
From: Barry Komisaruk <brk@psychology.rutgers.edu>
Date: September 22, 2014 at 7:40:25 PM PDT
To: demo
Subject: Re: Will Rutgers assign the codes in NJ?
Thank you. No code yet.
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
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I'm going to be mailing this tomorrow :)
Wow!!!
:)
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All set. Mailed, ready and excited. :)
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All set. Mailed, ready and excited. :)
(http://fc02.deviantart.net/fs71/f/2010/148/3/8/Congratulations_Andy_by_youlittlemonkey.jpg)
...and to everyone else
preparing for our first
"Moon Launch"! :)
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god+bless+you
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:) Keep going guys. We will do this, even if this hypothesis doesn't pan out.
If not for us, for the next generation of POIS sufferers.
Nothing will stop us now. I am not ashamed anymore and tell everyone I know about this (besides wk & school). They will have to deal with that themselves if they don't like it; because it is real, it is here, "it is certainly POIS," but we will treat it then eradicate it.
I don't want an 12yr olds to suffer like I did. I cannot let that happen. :)
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You have the noblest motives, Andy. Thank you for being a true forum friend! :)
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Submitted my application - looking forward to hearing from the team at Rutgers
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Submitted my application - looking forward to hearing from the team at Rutgers
Awesome!
How may more ppl have applied thus far? Is that 4 of us- does anyone know?
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Submitted my application - looking forward to hearing from the team at Rutgers
Awesome!
How may more ppl have applied thus far? Is that 4 of us- does anyone know?
DOUBLE AWESOME! :)
Stef thinks there might be 7 (verbally committed, not yet sent in).
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Did I read that 12 are needed?
I'm in the States, so for logistical reasons I feel obligated to apply, although I have a busy year ahead of me.
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I'll ask Dr K.
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Submitted my application - looking forward to hearing from the team at Rutgers
Awesome!
How may more ppl have applied thus far? Is that 4 of us- does anyone know?
I sent in my application today, should be there Thursday.
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Submitted my application - looking forward to hearing from the team at Rutgers
Awesome!
How may more ppl have applied thus far? Is that 4 of us- does anyone know?
I sent in my application today, should be there Thursday.
FANTASTIC!!! :)
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(http://www.greatpapers.com/documenttemplates/images/ClipArt_GreatTeamwork_Icon.jpg)
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"Did I read that 12 are needed?
I'm in the States, so for logistical reasons I feel obligated to apply, although I have a busy year ahead of me."
Hi, Myers6609 and Everyone Else!
12 men with POIS will be selected for the study.
But please don't feel "obligated" to apply, just because you live in the US. Only apply if you really want to participate. It will involve a commitment of time, energy, and personal funds, especially if you have travel and board expenses.
So far, there has been no shortage of applicants, and there are probably several other applicants who we're not aware of.
On the one hand, the more who apply, the better, as that will give Dr. K and his team a broader pool of applicants to choose from. But none of you needs to feel duty-bound!
Not for nothing, there is something wonderful to be said for participating in pioneering research, led by a scientist of Dr. Komisaruk's caliber. And he is such a decent person -- he'll put each participant at ease.
There's no need for anyone to feel pressured about participation -- not for those living in the US or for those overseas.
But -- Meyers6609 -- I DEFINITELY do encourage you to apply! :-)
Stef
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Filled out! I'm ready. #hyperPOISmode
LOL, Andy!
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I was researching vagal nerve simulators and realized something that hit me like a ton of bricks!
I have taken a plethora of psych drugs to help with the symptoms of POIS (30 or so) and the only ones that have ever helped fall in the anti-seizure category besides just being psych drugs. Depakote for 10yrs which is anti-seizure and mood stabilizer and now Oxcarbazipine which is similiar in some ways. I needed 2000mg of depakote toward the end and am going up on the Ox right now (1200mg- 1800mg). I find I tolerate these drugs very easily whereas most other psych drugs make me worse; and would probably benefit from the vagal nerve stim immensely. You guys may want to consider these drugs, not becasue your crazy but becasue they may stabilize you for the time being. They wk different than other psych drugs and help physical pain and symptoms the most I have ever experienced. More than exercise or any supplement I have taken. They also help make your OCD and mood more stable. Talk to docs first, of course.
A neurologist once diagnosed me with myoclonis, which is a peripheral nervous system seizure- in a sense. Of recent I have not had much, but palpitations are fairly constant, except after abstaining for 1wk or so. This symptom is distressing despite the docs I see saying I am young and have a healthy heart and it will eventually pass.
I think these guys got something right with this study...
Anyone know when it will start?
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It started! The forms we posted is an indication, as Daveman writes , that "...they haven't been sitting on their hands." There's a lot of prep work we don't see, but it's happening !!! :) :) :)
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It started! The forms we posted is an indication, as Daveman writes , that "...they haven't been sitting on their hands." There's a lot of prep work we don't see, but it's happening !!! :) :) :)
:) The more I think about their hypothesis the more it makes sense.. I hope this is it :)
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And NORD's prestigious MAC came to the same conclusion as you!
Verrrry encouraging. :)
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Just some very brief (but important) instructions re: paperwork for applying for Dr. K's study --
1) Print out the following questionnaires and fill out:
#7A ("POIS Symptoms");
#7B ("Your POIS History");
#7C (2 pages, questions 1- 21 -- ***2 pages!);
#7D ("SCL-90" -- only pages 2,3 and 4 -- 90 questions)
2) Re: #7D -- the "SCL-90" questionnaire -- only pages 2,3 & 4 are required. Please ignore the first (title) page -- it's a scoring sheet that won't be used. Dr. K. is only interested in your responses re: pages 2,3 and 4 (90 questions);
3) Print out the two pages related to the Informed Consent -- Attachment #4 (demo posted these two pages out of order -- the first page is "Informed Consent" and the second page starts with, "Research Participants Initials____")
4) Read, initial and fill out info for second page of the Informed Consent.
So -- the application consists of a minimum of 9 pages -- plus any comments written onto separate pages that you might wish to include.
Thanks Stef, your summary of the list of required pages definitely helps!!
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Just some very brief (but important) instructions re: paperwork for applying for Dr. K's study --
1) Print out the following questionnaires and fill out:
#7A ("POIS Symptoms");
#7B ("Your POIS History");
#7C (2 pages, questions 1- 21 -- ***2 pages!);
#7D ("SCL-90" -- only pages 2,3 and 4 -- 90 questions)
2) Re: #7D -- the "SCL-90" questionnaire -- only pages 2,3 & 4 are required. Please ignore the first (title) page -- it's a scoring sheet that won't be used. Dr. K. is only interested in your responses re: pages 2,3 and 4 (90 questions);
3) Print out the two pages related to the Informed Consent -- Attachment #4 (demo posted these two pages out of order -- the first page is "Informed Consent" and the second page starts with, "Research Participants Initials____")
4) Read, initial and fill out info for second page of the Informed Consent.
So -- the application consists of a minimum of 9 pages -- plus any comments written onto separate pages that you might wish to include.
Thanks Stef, your summary of the list of required pages definitely helps!!
You're welcome, Mel!
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Dear friends! When will the study ???
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I was researching vagal nerve simulators and realized something that hit me like a ton of bricks!
I have taken a plethora of psych drugs to help with the symptoms of POIS (30 or so) and the only ones that have ever helped fall in the anti-seizure category besides just being psych drugs. Depakote for 10yrs which is anti-seizure and mood stabilizer and now Oxcarbazipine which is similiar in some ways. I needed 2000mg of depakote toward the end and am going up on the Ox right now (1200mg- 1800mg). I find I tolerate these drugs very easily whereas most other psych drugs make me worse; and would probably benefit from the vagal nerve stim immensely. You guys may want to consider these drugs, not becasue your crazy but becasue they may stabilize you for the time being. They wk different than other psych drugs and help physical pain and symptoms the most I have ever experienced. More than exercise or any supplement I have taken. They also help make your OCD and mood more stable. Talk to docs first, of course.
A neurologist once diagnosed me with myoclonis, which is a peripheral nervous system seizure- in a sense. Of recent I have not had much, but palpitations are fairly constant, except after abstaining for 1wk or so. This symptom is distressing despite the docs I see saying I am young and have a healthy heart and it will eventually pass.
I think these guys got something right with this study...
Anyone know when it will start?
Andy, you will be interested to know I have the same experience. I have had the best results with meds that were initially designed for anti-seizure purposes. I currently take Lithium Carbonate as my mood stabilizer, and Clonazepam (klonipin) for "anxiety". I put anxiety in quotes, because I've found it's really not what one would think of as classic anxiety (stress generated by obsessive thoughts, fears, worries). It's more of a nervousness that is pervasive in my daily life which occurs no matter what the situation. If I forget to take the klonipin, I experience symptoms like jitters, rapid speech, and an "edginess". All things that are somewhat like precursors to seizures.
I have also had HORRIBLE reactions to certain anti-seizure meds, like Trileptal and Lamictal. Felt like I was going through medieval torture or something. The most important intolerance was when I took Provigil, a "wakefulness promoting agent" that can help people who feel tired a lot. Well, after 2 days on it, it caused me to have something like a seizure. I was luckily in a hospital at the time it happened, and had many people observe the situation. It felt like molten lava was slowly filling up my body, starting from the base of my head and spreading throughout my whole torso, arms and legs. I was panicking and sweating profusely. The doctors told me their best guess was that I had a "vasovagal event", which I found out is doctor speak for a panic-induced seizure. It took some time for it to subside, but about 5 days after I had my first episode of psychosis. I've had to take an anti-psychotic ever since.
I strongly suspect that we will find out something very relevant to us through Dr. K's studies, more than we even expect!
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Very encouraging, Nightingale!
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When can we expect news on when this study may occur? Or at least hear about any info regarding what is happening... Are there enough candidates yet?
I know these guys are doing wk but I have the patience of a chipmunk on amphetamines ;) I blame it on POIS but that one is all me! ;)
Thanks guys.
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When can we expect news on when this study may occur? Or at least hear about any info regarding what is happening... Are there enough candidates yet?
I know these guys are doing wk but I have the patience of a chipmunk on amphetamines ;) I blame it on POIS but that one is all me! ;)
Thanks guys.
Andy, perhaps u can ask Dr K (email ?) since you're the Very First Applicant!!??!!
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When can we expect news on when this study may occur? Or at least hear about any info regarding what is happening... Are there enough candidates yet?
I know these guys are doing wk but I have the patience of a chipmunk on amphetamines ;) I blame it on POIS but that one is all me! ;)
Thanks guys.
Andy, perhaps u can ask Dr K (email ?) since you're the Very First Applicant!!??!!
I did email him about a wk ago and no reply...
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When can we expect news on when this study may occur? Or at least hear about any info regarding what is happening... Are there enough candidates yet?
I know these guys are doing wk but I have the patience of a chipmunk on amphetamines ;) I blame it on POIS but that one is all me! ;)
Thanks guys.
Andy, perhaps u can ask Dr K (email ?) since you're the Very First Applicant!!??!!
I did email him about a wk ago and no reply...
My guess is that he's bogged down in evaluating everyone's questionnaire responses.
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When can we expect news on when this study may occur? Or at least hear about any info regarding what is happening... Are there enough candidates yet?
I know these guys are doing wk but I have the patience of a chipmunk on amphetamines ;) I blame it on POIS but that one is all me! ;)
Thanks guys.
Andy, perhaps u can ask Dr K (email ?) since you're the Very First Applicant!!??!!
I did email him about a wk ago and no reply...
My guess is that he's bogged down in evaluating everyone's questionnaire responses.
Probably... I'm just hopping they recieved my application too; because usually people send you back a notification that such has happened. Yet, I don't know how this wks cuz I have never done a study before.. I wkd on one once, but that was avian-ecology and there was only data from animals...
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Hi, Andy -- and Everyone!
Andy, if you sent your application by Fed Ex, there should be a tracking number that let's you track (online) when/if your item was delivered.
I'm in agreement with Demo. Dr. K. is likely bogged down with evaluating the questionnaires (in addition to working on other research projects). I've got no "inside" information, but I do think he's received many applications...probably several more than 12. If any others here are considering applying, now would be the time. You could always back out if you change your mind!
We can't expect him or his team to keep us all advised every step of the way (although we want to be advised about everything!). Just remember that he can be trusted to do this research properly -- we're certain about that.
And he also knows that everyone is waiting with baited breath. He's definitely not dragging his heels on purpose.
One other thing that needs to be kept in mind (this is for everyone's knowledge) -- all research involving human subjects in the US is considered highly confidential. The laws protecting patients' privacy are taken very seriously. So, when/if any of you does get invited to participate, Dr. K. may ask you to not post publicly about it until he's tested the 12 participants. If that happens, it won't be a surprise and would make sense. He wouldn't want one participant's experience to color another's. Don't think it strange if he asks you not to discuss specifics publicly, until he gives the go-ahead.
Stef
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Hi Stef,
Thanks for the guidance.
FloppyB
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Hi, Andy -- and Everyone!
Andy, if you sent your application by Fed Ex, there should be a tracking number that let's you track (online) when/if your item was delivered.
I'm in agreement with Demo. Dr. K. is likely bogged down with evaluating the questionnaires (in addition to working on other research projects). I've got no "inside" information, but I do think he's received many applications...probably several more than 12. If any others here are considering applying, now would be the time. You could always back out if you change your mind!
We can't expect him or his team to keep us all advised every step of the way (although we want to be advised about everything!). Just remember that he can be trusted to do this research properly -- we're certain about that.
And he also knows that everyone is waiting with baited breath. He's definitely not dragging his heels on purpose.
One other thing that needs to be kept in mind (this is for everyone's knowledge) -- all research involving human subjects in the US is considered highly confidential. The laws protecting patients' privacy are taken very seriously. So, when/if any of you does get invited to participate, Dr. K. may ask you to not post publicly about it until he's tested the 12 participants. If that happens, it won't be a surprise and would make sense. He wouldn't want one participant's experience to color another's. Don't think it strange if he asks you not to discuss specifics publicly, until he gives the go-ahead.
Stef
Ok. Just wanted to know because there a lot of unknowns with POIS already and perhaps I was missing some info that you did know... Thank you for the information though, it is helpful. :)
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Andy, I also submitted my paperwork via FedEx. I havn't heard back, and I emailed the team asking if my info had gotten to them. No response yet, I think this is part of confidentiality or just time constraints.
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Andy, I also submitted my paperwork via FedEx. I havn't heard back, and I emailed the team asking if my info had gotten to them. No response yet, I think this is part of confidentiality or just time constraints.
Yea, I would guess that is part of it. I forgot to fed-ex it because I live in NJ and Rutgers Newark is 20miles from my home- so I just mailed direct since it's so close to me. In fact I may go back to the school at that very school for a BS in Psych... Ironic I guess... In the process of applying for the winter semester now.
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Tell me when to begin the study?
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The doctor wants that all people with Pois fill the questionare or only thus taht will apply for the study???
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Fidalgo,
I think Demo or Stef probably needs to answer that, for clarity.
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Got an update from Stef on another thread, posting this here so it's known:
Just to clarify for everyone, the study has officially started. You all need to know this.
While it might seem like nothing is happening, Dr. Komisaruk and his team are evaluating all the questionnaires that were received. Apparently, this is no small feat! Those questionnaires are REVEALING -- and Dr. K. needs to be certain that he chooses the most appropriate study participants.
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The doctor wants that all people with Pois fill the questionare or only thus taht will apply for the study???
Hi, Fidalgo,
I remember Dr. Komisaruk mentioning early on that he'd appreciate receiving questionnaires even from men who can't participate, but would like to share their information.
I don't know if he still feels this way, but your answers can only help the study. So, my suggestion is -- if you'd like to answer the questionnaires -- feel free to do so, letting him know that you can't participate but want to share your information for the sake of the study.
I suggest printing the questionnaires, filling them out, scanning them and then sending them to him via email. His email address is : brk@psychology.rutgers.edu.
Stef
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The doctor wants that all people with Pois fill the questionare or only thus taht will apply for the study???
Hi, Fidalgo,
I remember Dr. Komisaruk mentioning early on that he'd appreciate receiving questionnaires even from men who can't participate, but would like to share their information.
I don't know if he still feels this way, but your answers can only help the study. So, my suggestion is -- if you'd like to answer the questionnaires -- feel free to do so, letting him know that you can't participate but want to share your information for the sake of the study.
I suggest printing the questionnaires, filling them out, scanning them and then sending them to him via email. His email address is : brk@psychology.rutgers.edu.
Stef
Thanks,
I will do that way.
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Hi Stef,
I am a new member to this site. Is it too late to fill out a questionnaire and participate in the study? I live in California. Would this disqualify me from participating?
Thanks,
Paul
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Stef,
I left out the fact that I have been tested by an allergist in Berkeley, Ca. I gave a sample and did the skin prick test and was proven to be allergic to my own semen. I started hypo sensitization shots but had some issues and had to stop. Didn't know if this would make me a better candidate than others for the study. Thanks
Paul
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Stef,
I left out the fact that I have been tested by an allergist in Berkeley, Ca. I gave a sample and did the skin prick test and was proven to be allergic to my own semen. I started hypo sensitization shots but had some issues and had to stop. Didn't know if this would make me a better candidate than others for the study. Thanks
Paul
Hi Paul,
Welcome to poiscenter!
From what we know, there may still room for a few applicants -- so I suggest that you fill out the questionnaires and send them via Fed Ex.
Living in California would not be an issue for Dr. Komisaruk. But please keep in mind that you could end up having to stay near Rutgers for several days (I think at the most, 9 days, depending on your response to the Cerbomed ear stimulator).
Re: the semen allergy testing and the subsequent hypo-sensitization shots -- I can't answer for Dr. Komisaruk. But it doesn't seem that this would affect participation one way or the other. In fact, he might find it of interest. So if you can get hold of your records from your allergist (which should be easy to do), you should probably send them to Dr. K as follow-up. I'd advise letting Dr. K. know in your questionnaire (there's space for additional comments) that you were tested, received some shots, and that you'll send the records on to him.
But get the questionnaires sent ASAP.
Wishing you the best of luck!!
Stef
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Stef,
Thanks for the quick response. I will get the questionnaire to the Dr. asap. Cerbomed ear stimulator? Wow.
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Welcome to POISCenter!
(http://schools.springisd.org/images/102-Welcome%20Animation.gif)
Here are some POIS resources which may be helpful to you:
We are proud to announce our first POIS research grant, awarded in December, 2013, to be managed for us by the National Organization for Rare Disorders (NORD). Grant awarded to:
Barry Komisaruk, PhD (Principal Investigator), Distinguished Professor of Psychology
Rutgers University
Newark, New Jersey, USA
Study title: Is POIS a Case of Vagal Dystonia? -- An fMRI Brain Activity Analysis
More about our Grant:
You can start here, continue reading following pages and other forum threads:
http://poiscenter.com/forums/index.php?topic=426.msg11042#msg11042
Click here to see Mat780's excellent YouTube POIS Channel. (http://www.youtube.com/user/POISchannel/videos) Mat's YouTube videos include (1) our great new April 12 POIS TV Documentary. A must-see. And (2) The Learning Channel documentary, featuring our forum member "Animus".
Click here to see The POIS reddit post. (http://www.reddit.com/r/IAmA/comments/rge55/i_am_a_guy_with_a_rare_sexual_illness_its_so/) Outsiders (non-POISers) spontaneously gifted NORD's POIS Research Grant $1,000+ from this reddit post. Thanks to "mellivora" and "CertainlyPOIS"!
Our POIS chatroom (realtime chat). Invite or visit another member(s) there, ANY TIME. We can all get to know each other better:
Just click here first, and then look for "CHAT" button towards top of page, 6th button to your right! (http://www.POISCenter.com/forums/index.php)
Our POIS Forum - architectural genius: "Daveman" - for detailed subject-by-subject discussion.
http://www.POISCenter.com/forums/index.php
Our POIS Information Website, built by "mat780", is here:
http://sites.google.com/site/POISwebsite/
The POIS Information Website is home to the POIS Forum Compendium, written by "Pyropeach", and contains theories already discussed here and treatments that have both worked and failed.
Please see "B_Jim"'s POIS Summary of All Cases, here as well as others on the Web. This includes remedies that we have tested, and results.
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg149009#msg149009
"Girlwind" has created an excellent POIS Video:
http://www.youtube.com/watch?v=UWBxAUC9k1g
Post Orgasmic Illness Syndrome "POIS": Case report
Authors:
Abdalla M Attia*, Magda H Al-Ziny, Hossam A Yasien
*Corresponding author: Andrology Unit, Minoufiya University, Shibin El Kom, Eygpt
For more info, check out emi_b's SMF POIS thread:
http://poiscenter.com/forums/index.php?topic=191.0;topicseen
POIS Research Studies available Upon Request:
1. and 2. POIS Research Studies, 2011
These 2 papers reveal Dr. Waldinger's POIS autoimmune hypothesis and suggest one possible avenue of treatment.
3. First POIS Research Study, 2002
We have a copy of the first formal medical investigation on POIS by Prof. dr. Marcel D. Waldinger,MD, Ph.D., and Dr. Dave Schweitzer, MD.
4. Recent POIS Research Study, 2010
CASE REPORT
Postorgasm Illness Syndrome - A Spectrum of Illnesses
Jane Ashby, MRCP, and David Goldmeier, MRCP
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg316781#msg316781
5. British Medical Journal Case Report, 2010
Case study by Dr. Selwyn Dexter of a patient with a headache-featured POIS symptom treated with progesterone/norethisterone.
http://casereports.bmj.com/content/2010/bcr.10.2009.2359.short?rss=1
How to get any or all of the above 5 studies: send the Administrators "demografx" or "daveman" a Private Message (PM) with your regular email address (e.g., jim@abc.com) and we'll send you back the PDF(s).
To send a Private Message, click on messages link at the very top of this page. Then click "Send Message". From that point on, it works just like posting a message here, except that it only goes to the person(s) you designate.
New York Times article,
January 20, 2009
Mind
Sex and Depression: In the Brain, if Not the Mind
By RICHARD A. FRIEDMAN, M.D.
http://www.nytimes.com/2009/01/20/health/views/20mind.html?_r=1&scp=1&sq=friedman%20sexual%20January%2020&st=cse
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In addition to serving our own informational interests, the resources listed above can be useful for you to show our credibility to the medical world - which often shows little understanding and is sometimes skeptical of our condition: POIS has scientific underpinnings and POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapeutic community. All of this information can greatly help you to fight the immediate reaction of some doctors: so just tell them, "IT'S NOT 'ALL IN YOUR HEAD'! "
(http://i858.photobucket.com/albums/ab143/demografx/f0cc96c8.jpg)(http://i858.photobucket.com/albums/ab143/demografx/ba4b3bc8.jpg)
It can be very helpful to you when dealing with medical professionals to point this out. Click to see
POIS' official listing, as recognized by the
National Institutes for Health (NIH), Office of Rare Diseases Research: (http://rarediseases.info.nih.gov/GARD/Condition/10809/Postorgasmic_illness_syndrome.aspx)
And in Europe: Orphanet now lists POIS on their website. - Click here. (http://www.orpha.net/consor/cgi-bin/Disease_Search.php?lng=EN&data_id=20421&Disease_Disease_Search_diseaseGroup=pois&Disease_Disease_Search_diseaseType=Pat&Disease%28s%29/group%20of%20diseases=Postorgasmic-illness-syndrome--POIS-&title=Postorgasmic-illness-syndrome--POIS-&search=Disease_Search_Simple)
The Post Orgasmic Illness Syndrome (P.O.I.S.) Forum is listed in the organization database of the National Organization for Rare Disorders (NORD) -- http://poiscenter.com/forums/index.php. The link for this, through their home page, is --
http://rarediseases.org/rare-disease-information/organizations/byID/3136/viewDetail.
POIS also appears in credible medical sources such as the Journal of Sexual Medicine (Dr. Waldinger's study), British Medical Journal (Dr. Selwyn Dexter's study), and wikipedia:
http://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome
For over 5 years, our POIS forum has attracted over 200 POIS sufferers worldwide who have posted here, research on an additional 200 sufferers elsewhere on the internet, plus our pages have been read nearly 2,000,000 times. Not bad for a rare malady.
Show some of this to your doctor - with pride. Chances are, you know far more about POIS than s/he does. Don't be intimidated by fancy diplomas. It's almost impossible for any one doctor to know much about POIS before you walk into his/her office. Unfortunately, it's up to you to educate them. And if you happen to find yourself with a disagreeable "student"-doctor (you're the teacher), find another doctor. Quickly!
SEARCH THE NSF FORUM ARCHIVES WITH GOOGLE
We have an overwhelming amount of NSF data: more than 5 years' worth of posts (over 10,000 posts!) from 200+ Forum members, and an additional 200 POIS sufferers found elsewhere on the Internet by Member B_Jim.
In the Google search box, type
whatever-it-is-you're-interested-in-finding-out[space]POIS[space]site:http://thenakedscientists.com/
for example, I tried
nocturnal emission POIS site:http://thenakedscientists.com/
and 740 results came up for "nocturnal emission" within the Forum.
be careful with spaces (you can use them before the word "site") and no-spaces (everything after the word "site")
Google even provides you results with the Message# for each result. But Message #'s do change, so be patient and look for the approximate Message#.
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(http://i858.photobucket.com/albums/ab143/demografx/97F0607B-5F26-4D97-84AC-A455B8F7185F-272-0000000F543248CD.jpg)
Community guidelines
We created POISCenter so that everyone would have a safe place to discuss health and wellness. These guidelines are the things we expect all POISCenter members and visitors to do, and not to do.
Do's
Be nice, be supportive
POISCenter works because we support and care for one another. Be nice, and be supportive. Do your best to respect differing points of view.
Take your time and be safe
Please take your time getting started with POISCenter. After signing up, check your privacy settings (http://poiscenter.com/forums/index.php?action=profile) and make sure that you are comfortable with how your personal information is being shared. If anything is confusing to you, drop us a line (http://poiscenter.com/forums/index.php?action=pm;sa=send;u=1). We're here to help. We strongly recommend you not use your real name or e-mail address as your screen name. Your screen name is public, which means anyone on the Internet can see it, and find it. If you want to change your
screen name, you can do so here. We also recommend you not post personally identifiable information like your full name, e-mail address or phone number in POISCenter. If you want to exchange this information with someone you feel comfortable with, do so in a private message.
Let us know if something is wrong
If you see a member doing something that is contrary to these guidelines or simply feels wrong to you, let us know. If your instinct says something is wrong, it may very well be. We never reveal who reported a problem to us. Every post and member profile has a link to report the item for review, and you can submit your report anonymously.
Take a deep breath
The Internet makes it easy to forget that we're talking to other human beings, and tomisunderstand one another. If a member says something that bothers you, take a deep breath and pause before replying. You're replying to another human. They may be having a bad day or may be upset. You may have misunderstood them, or they may not have expressed themselves clearly. You may simply not see eye-to-eye. POISCenter works because we respect one another.
It's rare that we need to shut down a discussion, but when we feel that a discussion is generating "more heat than light," we do.
Respect the privacy of others.
Please respect the privacy of members and their right to remain anonymous. Do not post personal information about others in POISCenter unless you are a family member or have been directed to do so by the member, or their family. This often comes up when a member is hospitalized or otherwise away from POISCenter for a time. We understand that you want to know how your friend is doing and share that information, but the member's privacy must be respected. In some cases, you may know an POISCenter member in the real world. Perhaps you were in treatment together, or attend events together. When conversing in public settings -- such as discussions and journal entries -- please avoid posting information that could be used to identify the person. For example, don't post the member's real name, or names of their children, if they haven't made that information public themselves. When in doubt, err on the side of caution and leave those details out.
Finally, please do not re-post information about a member from another site, like Facebook, in POISCenter. The information may not have been intended for a wider audience.
Do not's
These are the things we must ask you not to do, for the safety of members and to keep POISCenter running smoothly.
Do not use POISCenter as a substitute for, or to give, medical advice
POISCenter is not a substitute for professional medical advice or treatment. Always consult your physician and do not rely on the information in this site when making decisions about your health. The content in POISCenter is for information only and is not reviewed by medical professionals. Similarly, do not use POISCenter to give medical advice. You may share information about your experiences, but do not play the role of health professional.
Three week Rule
If you have found a treatment which seems to work very well to alleviate your symptoms and are dying to tell everyone about it, respect our three week rule. If you think you have found a treatment, make a short announcement that you think you have found something very useful, but that you will respect the three week rule before describing the treatment to others. The reasons for this are many-fold: the success you perceived may have been circumstantial, give the procedure time to prove itself, the treatment may only work for you and only in certain conditions and we don't wish to raise false hopes with our members unnecessarily.
And remember, the previous rule always has supremacy over this one.
No commercial use, promotion or solicitation
You may not use POISCenter for any commercial purpose, marketing, promotion or solicitation. This includes promoting a company, product, service, person, treatment, therapy, Web site, support group, non-profit, charity or fundraiser; recruiting members to participate in market research, clinical studies, or surveys; soliciting donations for charitable causes or for yourself; presenting your resume or using POISCenter to seek employment; and soliciting malpractice clients. Commercial entities are not permitted to sign up or create profiles in POISCenter.
Do not include links other than Email in your profile. Permission must be granted explicitly for any links on the site, including the profile area.
Member found using POISCenter for these uses will be banned, reported to appropriate SPAM databases AND deleted.
Do not post inappropriate content
We work hard to keep POISCenter a safe and comfortable place for members. Content, including avatars, that is obscene or violent, refers to material that is obscene or violent, or contains hate speech or remarks that are disrespectful to any race, religion, gender, sexual orientation or individual is not permitted. This includes derogatory remarks, attacks, or threats against POISCenter or POISCenter partners. Content that is potentially libelous, violates an individual's privacy, or violates the legal rights of any individual or entity is not permitted. Links to other sites which contain such material are also not permitted. You may not post information which is false or misleading, or misrepresent yourself. A "reasonable person" standard applies and we reserve the right to remove any content or profile that we feel violates this guideline.
Do not interfere with the operation of the site
We reserve the right to remove posts and block access by individuals which interfere with the normal operation and use of the site, at our discretion. Examples include off-topic posting, bumping posts, posts that excessively advance a personal agenda or make it difficult for other members to be heard, creating multiple accounts or aliases, and abusing the friend or private message features.
No copyright infringement
If you find an article or other information online that you think will interest members, post a short description, with an explanation as to why you think it is important and include a link to the original document if possible. That will allow your fellow members to retrieve the source document. Do not post the entire item or significant portions of it. If we think a post violates someone's copyright, we will remove it.
No scraping or data harvesting
You may not scrape, harvest or otherwise collect information in bulk from POISCenter. You may not copy content from POISCenter for another site, or for any other purpose.
Don't use POISCenter to offer or exchange medication
No part of POISCenter may be used to facilitate the donation, exchange or receipt of medication, as it is against the law to do so. If you are interested in donating unused medication to help those in need, you'll need to determine how the laws of your country and locality govern such donations. In the US, many states have programs through which unused medication can be donated for distribution to those in need. Good starting points for learning about these programs are your state's Web site, your physician, and your pharmacist. You're welcome to share information about such programs here, but you may not use this site to engage in or facilitate the exchange of medication.
The moderators have the last word.
These rules are general guidelines that follow a "reasonable person" rule, but they are not the last word. Situations may arise and new rules may need to be born, or considerations for the site and it's direction may need to be adapted. The moderators will always have the last word in the resolution of conflicts, situations and problems.
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Stef,
Do you know where I can find the consent form?
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Stef,
Do you know where I can find the consent form?
Hi Paul,
The consent form is at the beginning of this thread, on page 2. It consists of two pages, so you'll need to print out both.
Demo used photobucket to post them on poiscenter:
Pg. 1 (Starts with "Attachment #4") -- http://i858.photobucket.com/albums/ab143/demografx/4FC82148-63D0-4AEF-81F0-52E13AA7D6D9.jpg
Pg. 2 (Starts with "Research Participant Initials") -- http://s858.photobucket.com/user/demografx/media/0D97E424-BB36-48A2-A52E-C14F1D1A1AA4.jpg.html
Staple them together, fill out second page, and include with the other questionnaires.
If this doesn't work -- please let me know.
Good luck!
Stef
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Hello all,
Paul, California sure seems to be late on the news! lol - I am also from California.
I am aware that I am tardy due to a new position in my life that kept me off of the forum for awhile.
I have filled out all of the recommended forms that Demo has posted to mail to Dr. K. tomorrow.
Thank you Demo & the community for sharing the forms and valuable information on this website.
The fact that it should not be a problem for me if everything else checks out on my application. I'm more than happy to help and equip as much support to those who can't make the trip.
Regardless, if I don't get accepted, I just want to show Dr K. and the team that are assembling this study, that there are more people who need to be let known-- a lot of people who are suffering from this unknown and rare syndrome, that hopefully this study will get sent to other researchers and Scientist/doctors and to NORD and to NIH and cause awareness. Unfortunately this may not happen with this study very soon. Its also another step.
There is a previous thread conversation on this site regarding an online discussion room concept. I would like to participate in future online conferences and phone meeting discussions, etc.. I think that will be a good concept to do in the future. It will give us confidences and will give me a positive vibe for the trying days ahead. An assembly for a common purpose and act or process of someday coming together.
Knowing that we actually can talk to people who have or might have this syndrome. Perhaps this could be done once a year, or maybe even a monthly meeting.
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Welcome, Bryan!
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Hi guys.
I'm assuming that now, 2-3 months later that it's a bit late to apply for the study (really I probably couldn't make it anyway, nor would I be a very good candidate).
But would it be in any way helpful to the research team to fill out the forms and send them in anyway?
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Hi guys.
I'm assuming that now, 2-3 months later that it's a bit late to apply for the study (really I probably couldn't make it anyway, nor would I be a very good candidate).
But would it be in any way helpful to the research team to fill out the forms and send them in anyway?
Hi, dean93 --
It's not too late to apply for the study, just FYI. According to a brief email message from Dr. Komisaruk ~ 3 weeks ago, he is still accepting applications.
Dr. K. is definitely interested in responses to the questionnaires, even if one won't be able to participate. So -- please do fill out the forms and send them in, and include a note that you probably can't participate but want to help out by providing responses.
I don't know why you feel you wouldn't be a good candidate for this study, but we (Demo, Daveman and I) don't know how Dr. K is choosing participants. You could be an excellent candidate for participation!
Not pushing you -- just wanted to let you (and everyone else) know. Dr. Komisaruk's choices for study participation are his and his alone, and completely confidential.
Best wishes,
Stef
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Hello all,
Paul, California sure seems to be late on the news! lol - I am also from California.
I am aware that I am tardy due to a new position in my life that kept me off of the forum for awhile.
I have filled out all of the recommended forms that Demo has posted to mail to Dr. K. tomorrow.
Thank you Demo & the community for sharing the forms and valuable information on this website.
The fact that it should not be a problem for me if everything else checks out on my application. I'm more than happy to help and equip as much support to those who can't make the trip.
Regardless, if I don't get accepted, I just want to show Dr K. and the team that are assembling this study, that there are more people who need to be let known-- a lot of people who are suffering from this unknown and rare syndrome, that hopefully this study will get sent to other researchers and Scientist/doctors and to NORD and to NIH and cause awareness. Unfortunately this may not happen with this study very soon. Its also another step.
There is a previous thread conversation on this site regarding an online discussion room concept. I would like to participate in future online conferences and phone meeting discussions, etc.. I think that will be a good concept to do in the future. It will give us confidences and will give me a positive vibe for the trying days ahead. An assembly for a common purpose and act or process of someday coming together.
Knowing that we actually can talk to people who have or might have this syndrome. Perhaps this could be done once a year, or maybe even a monthly meeting.
Hi Brian!
Find me on Skype: thomasslowikowski
I can share contacts of other POIS members with you
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Thanks, Stef. I just sent Prof. K and his team the forms.
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Great going, dean!
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Hello. Still do not know when to start the practical part of research? Probably after the new year? As I understand correctly, the end of the study in June 2015? That is, patients have not yet arrived at the place of research.
Sorry, do not speak English fluently, so I can not follow all the news actively.
Best regards,
Alex.
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Alex, you can submit your application for study approval...or your experience!
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demografx, I would do it with great joy, but, unfortunately, there is no possibility for me. I'm just a student from another country.
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Thanks, Alex!
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Alex, one of the forms says that it "expires" in June of 2015, but I am not sure what that is referring to. Maybe the document itself? Maybe when people can officially apply? It might be that the whole study must be completed in a year, but that seems really fast. I don't really know, maybe another member knows.
Where are you from, Alex?
I know this is a somewhat difficult question to answer, but does anyone know how long it's going to take to actually get results from this study? I know it won't happen tomorrow, but I'm just looking for a general timetable, if anyone has any knowledge or experience with this sort of thing.
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Hi,
I?m a patient chap but, grateful as I am to have him on our side, I am a little disappointed with the lack of communication coming from Dr Komisaruk. I appreciate that his work involves more than just our POIS research and that there are many careful steps that need to be taken without giving anyone say false hope of inclusion in the study or too much detailed information that might affect participants? results amongst other things.
I sent my application for participation on 1st October. I imagine like most/all people here, I still have no idea if my application was received or when participants will be required to attend. Assuming all is well with Dr Komisaruk, I am certain he must have some idea when he might commence with the experiments. Many of us gave substantial funds toward the research and some of us will be participating. I?m sure there is no need to keep us all in the dark and for any air of mystery. It would be a simple courtesy to inform us that our questionnaires have been received and when a ballpark start date for those chosen would be (in the knowledge that this date might change). A little information along these lines would immediately eliminate the uncertainty I?m guessing many of us are feeling as to what is happening and it would be reassuring. So far, I have read a few assurances on the forum that things are progressing but these have been vague and I do think its about time we heard something a little more helpful.
As POIS sufferers we are used to non-responses from the medical world but I?d hoped our chosen team of researchers would be a bit more communicative. I?m certain Dr Komisaruk isn?t setting out to be cryptic and to seem unreachable and incommunicative but sadly that is how things are coming across to me at the moment. If we could be given a better idea of timescale and some acknowledgment that would be great. I wonder if this message can be communicated to Dr Komisaruk in a tactful fashion. We should be grateful that the research is taking place but as funders of the research (not to mention participants in it) I believe we should be given more regular and concrete updates than we have been receiving thus far.
Thanks,
Mel
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Keep Mellivora . Demo, you do have a relationship with the doctor? Maybe you could politely learn at least some approximate dates for the research? That is, it will be until June or noticed it 2 years. We are of course in no case do not hurry doctor Komissaruk, we just would have been much easier to live, if we knew how much we have to wait some information about our disease.
We would be very grateful to you
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Alex, one of the forms says that it "expires" in June of 2015, but I am not sure what that is referring to. Maybe the document itself? Maybe when people can officially apply? It might be that the whole study must be completed in a year, but that seems really fast. I don't really know, maybe another member knows.
Where are you from, Alex?
I know this is a somewhat difficult question to answer, but does anyone know how long it's going to take to actually get results from this study? I know it won't happen tomorrow, but I'm just looking for a general timetable, if anyone has any knowledge or experience with this sort of thing.y
Dean93,
I'm sorry for the delay in answering your question about that June 2015 expiration date.
I haven't looked back at the forms in a while, but I believe it was the IRB approval that contains the expiration date. The consent form may also have that expiration date. FYI, the IRB committee gives its approval for both the study and the consent form on the same date.
IRB approvals are "good" for one year. But researchers often aren't able to complete a one-year study in exactly one year, so they then obtain an extension of the IRB approval. It's standard practice, and the study does not get interrupted because of it.
When that June 2015 expiration date comes up, Dr. Komisaruk will obtain the needed extension.
I hope this answered the question.
Best wishes to all,
Stef
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dean93, Thanks for the reply. From Russia, St. Petersburg. I have applied to participate, but it seems only need 12 participants, and my English is average. Therefore, participants will be better than these other people. I can only help financially if suddenly once again be a fundraiser or something else. There is also a huge amount of analysis of surveys in hospitals, but they are all in Russian.
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Mel --
We heard from Dr. Komisaruk three weeks ago (November 26th). He was replying to my earlier email, in which I asked for confirmation that he was still accepting applications. His reply could not have been kinder. They were still accepting applications, and he also advised that "all was in order" (I hadn't asked him about that). He stated that they would be going forward with the study participation "soon."
I hear your frustration about the lack of communication from him. We've experienced it also! This is really a mystery to us, as he's expressed such sensitivity to the plight of POIS sufferers. And -- he really is an outstanding scientist.
Ultimately, he always answers our questions...but it takes some effort to get the answers. I don't know why this is the case.
I'll definitely write to him tomorrow morning, Mel. You've expressed your concerns very well...making it easy to convey them to him (on behalf of everyone).
Stef
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Mel --
We heard from Dr. Komisaruk three weeks ago (November 26th). He was replying to my earlier email, in which I asked for confirmation that he was still accepting applications. His reply could not have been kinder. They were still accepting applications, and he also advised that "all was in order" (I hadn't asked him about that). He stated that they would be going forward with the study participation "soon."
I hear your frustration about the lack of communication from him. We've experienced it also! This is really a mystery to us, as he's expressed such sensitivity to the plight of POIS sufferers. And -- he really is an outstanding scientist.
Ultimately, he always answers our questions...but it takes some effort to get the answers. I don't know why this is the case.
I'll definitely write to him tomorrow morning, Mel. You've expressed your concerns very well...making it easy to convey them to him (on behalf of everyone).
Stef
Stef:
(http://pinoakpto.org/files/2014/09/Thank-You.jpg)
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Hi Mel and Everyone,
Dr. Komisaruk replied right away to the email I sent him earlier today. I had clearly explained to him the need for communication from him. I also mentioned that some, if not all applicants had not received an acknowledgement that their applications had been received.
Here's his reply:
"We have selected two applicants to start piloting the research; they are geographically close to us here, so it would be relatively easy for them to come and go repeatedly, if necessary. We intend to start the research when convenient for them. We will be proceeding more rapidly as soon as we establish the optimal procedures with those two participants. Please feel free to post this information for the others."
FYI, I do recall that when Demo met with him last summer, he'd advised that he might choose the first few participants based on their proximity to Rutgers. This was because he wanted to be able "to establish the optimal procedures," -- exactly as he just wrote in his reply above.
Also, as I've mentioned previously, it's my guess that he's requested that ALL participants not disclose ANYTHING about the study experience -- so as not to influence other participants' reactions.
So -- the study is on!
I hope this helps. I was very glad to hear this news!
Stef
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Thank
you,
S T E F !!!!!!!!
(http://www.clipartbest.com/cliparts/RTA/4g5/RTA4g5qTL.gif)
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Stef,
Thanks for taking time to follow this up. It really does help to be updated and I think, as you have done, some updates can be given without compromising the study. I hope communications will be better from now on. I see Dr Komisaruk has written that the pilot will be started when its convenient for the chosen participants. It would be nice to have another update from him with a rough expected time of completion of the pilot study when the participants' availability has been more firmly established and things are well underway. Mainly its about avoiding prolonged periods of silence (say more than 7weeks or so??) and having a better idea of timescale.
Thanks again for helping us :) and please thank Dr Komisaruk for his quick response on this occasion (I'm sure you have already!)
Best,
Mel
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It would be nice to have another update from him with a rough expected time of completion of the pilot study when the participants' availability has been more firmly established and things are well underway. Mainly its about avoiding prolonged periods of silence (say more than 7weeks or so??) and having a better idea of timescale.
Excellent suggestions, Mel!!!
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Hang in there, we are just about ready to get down to the [POIS Research] nitty gritty,
(http://stream1.gifsoup.com/view6/2431844/rocket-launch-o.gif)
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Stef,
Thanks for taking time to follow this up. It really does help to be updated and I think, as you have done, some updates can be given without compromising the study. I hope communications will be better from now on. I see Dr Komisaruk has written that the pilot will be started when its convenient for the chosen participants. It would be nice to have another update from him with a rough expected time of completion of the pilot study when the participants' availability has been more firmly established and things are well underway. Mainly its about avoiding prolonged periods of silence (say more than 7weeks or so??) and having a better idea of timescale.
Thanks again for helping us :) and please thank Dr Komisaruk for his quick response on this occasion (I'm sure you have already!)
Best,
Mel
Mel,
The waiting for news about the study is very, very difficult -- I know it is. It gets to me also.
This is directed to everyone (not directed specifically at you, Mel)...just some thoughts that I wanted to share here...
My sense is that Dr. Komisaruk is tredding very cautiously with everyone's safety -- and is assuming nothing. He doesn't/can't know at this point if or how men will respond to the Cerbomed device, and he also doesn't know how most men, in the midst of full-blown POIS, will cope far away from home in Newark, NJ. I have no "insider" information -- but I'm betting that this will be a slow-moving study -- for the safety of the participants and for the strength of this research.
I, for one, am absolutely grateful about this, no matter how frustrating the waiting for updates has been.
I've never met personally with Dr. K. or spoken directly with him, but I have exchanged a few emails with him -- literally, only a few emails. He is, without any doubt, a humanitarian and is no stranger to suffering. (You'll each have to read about him online -- his path to vagus nerve research and orgasm is nothing like you might have imagined and had nothing to do with sex.)
Re: those of you who may need to travel long distances to participate -- I have not one single concern about him understanding the difficulty and expense, the need for planning, etc., and am certain that he's already figured out how to best accomplish this.
He has your backs. You can trust him.
As time passes, I'll be in touch with him again if necessary. But I do think things will go slowly, at least with the first two participants.
Best wishes to all,
Stef
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Thanks Stef, Mel and Demo :-)
Wishing everyone here well over the holidays, that is for those who take time out at the year end.
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Hi, Everyone --
I've some good news about the study that I wanted to share ASAP.
Dr. Komisaruk has just brought a Clinical Study Coordinator on board for the POIS study. I heard from her yesterday. She'll be reaching out to all applicants via email. First and foremost, she'll be individually acknowledging receipt of each of your applications:
Nan Wise, PhD
Assistant Research Professor, Psychology, Rutgers-Newark
Fellow, The American Psychotherapy Association
Fellow, The National Board for Clinical Hypnotherapists
Board Certified Diplomate, The American Board of Examiners in Social Work
Certified Sex Therapist, AASECT
Dr. Wise is an associate of Dr. Komisaruk at Rutgers, and is an experienced clinician and researcher in her own right. Her doctorate is in neuroscience, and she has been directly involved in Dr. K's studies related to fMRIs. She's co-authored at least one paper with him.
From the three brief emails we've exchanged, it's obvious that she's aware of and sensitive to the issues and miseries that can accompany a condition like POIS. You'll find her to be approachable and very kind (and knowledgeable!). Additionally, Dr. Wise is aware of the frustration that applicants have expressed on the forum due to the lack of communications, and intends to remedy this.
So -- you should be hearing from her VERY soon.
Best wishes,
Stef
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Thank
you
again,
S T E F !!!!!!!!
(http://www.clipartbest.com/cliparts/RTA/4g5/RTA4g5qTL.gif)
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Thanks Daveman, Stef, Mel and Demo :-)
Wishing everyone
here well over the
holidays
that is, for those who take time out at the year end.
(http://greetingscraps.disk9.com/orkut/123%20greetings%20scraps%20ecards/Animations/Happy%20Holidays/u149/Margie077/Pic%20For%20Myspace/For%20My%20Space/happyHolidays71.gif)
THANKS, COLM!!!
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Hi, Everyone --
I've some good news about the study that I wanted to share ASAP.
Dr. Komisaruk has just brought a Clinical Study Coordinator on board for the POIS study. I heard from her yesterday. She'll be reaching out to all applicants via email. First and foremost, she'll be individually acknowledging receipt of each of your applications:
Hi Stef,
This is good news. Thank you for once again being a terrific Babel fish and much valued supporter of us POIS folk.
Best,
Mel
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Hi Mel,
You're welcome and thanks for the kind words
Research really does have it's own strange language. I remember when it was all new to me, thinking, "Huh?"
You're all pretty fluent at this point. :-)
Stef
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You're all pretty fluent at this point. :-)
Stef
Does that mean "POIS Research" can be added to this shirt?
(http://skreened.com/render-product/v/w/a/vwawyjncrgagqqulkqni/image.anvil-unisex-value-fitted-tee.white.w460h520b3z1.jpg)
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Hi Stef,
This is good news. Thank you for once again being a terrific Babel fish and much valued supporter of us POIS folk.
Best,
Mel
(https://33.media.tumblr.com/e2d700b694b4dc527fc9795b392ca115/tumblr_mnqieaffiO1qaubcto1_500.gif)
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(You'll each have to read about him online -- his path to vagus nerve research and orgasm is nothing like you might have imagined and had nothing to do with sex.)
Thanks for the two updates below. Glad to hear Dr Wise is on board. Do you know where would be a good place to read about Dr K's path of development?
Oh and happy new year to everyone!
FB
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(You'll each have to read about him online -- his path to vagus nerve research and orgasm is nothing like you might have imagined and had nothing to do with sex.)
Thanks for the two updates below. Glad to hear Dr Wise is on board. Do you know where would be a good place to read about Dr K's path of development?
Oh and happy new year to everyone!
FB
Hi Floppy,
Dr. Komisaruk's earlier research was on the sensory pathways of pain and the neurochemicals that block pain. If you do a search involving him with these topics, you'll gradually find information about his path to the Rutgers orgasm lab.
Stef
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Hi, Everyone --
I've some good news about the study that I wanted to share ASAP.
Dr. Komisaruk has just brought a Clinical Study Coordinator on board for the POIS study. I heard from her yesterday. She'll be reaching out to all applicants via email. First and foremost, she'll be individually acknowledging receipt of each of your applications:
Nan Wise, PhD
Assistant Research Professor, Psychology, Rutgers-Newark
Fellow, The American Psychotherapy Association
Fellow, The National Board for Clinical Hypnotherapists
Board Certified Diplomate, The American Board of Examiners in Social Work
Certified Sex Therapist, AASECT
Dr. Wise is an associate of Dr. Komisaruk at Rutgers, and is an experienced clinician and researcher in her own right. Her doctorate is in neuroscience, and she has been directly involved in Dr. K's studies related to fMRIs. She's co-authored at least one paper with him.
From the three brief emails we've exchanged, it's obvious that she's aware of and sensitive to the issues and miseries that can accompany a condition like POIS. You'll find her to be approachable and very kind (and knowledgeable!). Additionally, Dr. Wise is aware of the frustration that applicants have expressed on the forum due to the lack of communications, and intends to remedy this.
So -- you should be hearing from her VERY soon.
Best wishes,
Stef
It's been a month since this post, and I wonder if there has been any movement here. I haven't heard from the Clinical Study Coordinator personally, has anyone else?
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It's been a month since this post, and I wonder if there has been any movement here. I haven't heard from the Clinical Study Coordinator personally, has anyone else?
I haven't heard from anyone yet regarding my application
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Are applications still being accepted? I'm getting tired of this condition and I go to Rutgers New Brunswick, though not the Newark one, I am still pretty close.
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Nightingale and G-Man,
I've only just read your posts a few minutes ago about not hearing back yet from the study coordinator. Don't know how I missed your posts, but please don't think you were being ignored.
This is perplexing -- I don't know why you haven't heard from Rutgers. If you two haven't heard back, probably no one else has either.
I'll contact the study coordinator about it and post back as soon as I hear from her.
Going Less Crazy -- I'll also ask if they're still accepting applications.
Stef
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Hi, Going Less Crazy (and Everyone Else)--
I've just heard back from the study's clinical coordinator, Dr. Nan Wise. Yes, please feel free to send your application in if you're still interested.
Dr. Wise will be posting directly on the forum, so you all should be seeing information from her -- probably over the next week or so.
FYI -- all is well with the study. The delays were related to the typical issues that delay most clinical research studies, and it now sounds like participation will be starting very soon!
Best to all,
Stef
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(http://i858.photobucket.com/albums/ab143/demografx/D3218FF5-89D1-47C0-98B4-8F83EABF3924.jpg)
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(http://i858.photobucket.com/albums/ab143/demografx/07BD0F45-885F-4A50-BAA6-E75CBDEB531B.jpg)
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Hi, Going Less Crazy (and Everyone Else)--
I've just heard back from the study's clinical coordinator, Dr. Nan Wise. Yes, please feel free to send your application in if you're still interested.
Dr. Wise will be posting directly on the forum, so you all should be seeing information from her -- probably over the next week or so.
FYI -- all is well with the study. The delays were related to the typical issues that delay most clinical research studies, and it now sounds like participation will be starting very soon!
Best to all,
Stef
Hi stef,
is there any information about their work, their theory,
something helping to slow down the symp'
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Hi, Going Less Crazy (and Everyone Else)--
I've just heard back from the study's clinical coordinator, Dr. Nan Wise. Yes, please feel free to send your application in if you're still interested.
Dr. Wise will be posting directly on the forum, so you all should be seeing information from her -- probably over the next week or so.
FYI -- all is well with the study. The delays were related to the typical issues that delay most clinical research studies, and it now sounds like participation will be starting very soon!
Best to all,
Stef
Good to hear, looking forward to it
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Hi Stef,
Is there any information about their work, their theory,
something helping to slow down the symptoms?
Hi Outsider,
First of all, how are you doing? Have you had any improvement with the dystonia? Are you still considering the Botox injections?
(Botox has been used with good results in many people with different types of dystonia. That's just an FYI to you and the other forum members.)
There's no information/results to report about the POIS research yet. They are about to contact a few applicants (possibly 2) to participate, and it seems they are going to first choose men who live relatively close to Rutgers University. They are being very cautious at this early stage. As frustratingly slow as this has been going, at least you all can be certain that Dr. Komisaruk is taking none of this casually.
As you know, Dr. Komisaruk's theory is that abnormal vagus nerve response might cause the symptoms of POIS. The study will examine the vagus nerve response after ejaculation in men with POIS (compared to men without POIS).
I wish there were more to report, Outsider.
Please let us know how you're doing, especially with that awful drug-induced dystonia. I wish I spoke French!
Best wishes,
Stef
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Hi, Going Less Crazy (and Everyone Else)--
I've just heard back from the study's clinical coordinator, Dr. Nan Wise. Yes, please feel free to send your application in if you're still interested.
Dr. Wise will be posting directly on the forum, so you all should be seeing information from her -- probably over the next week or so.
FYI -- all is well with the study. The delays were related to the typical issues that delay most clinical research studies, and it now sounds like participation will be starting very soon!
Best to all,
Stef
Good to hear, looking forward to it
I'm trying my best to not sound like a broken record!
Stef
:-)
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Cool graphics demografx - and the message they convey tops it all off! Great to hear that about the study.
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Thanks, Prancer!
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Hi stef,
is there any information about their work, their theory,
something helping to slow down the symp'
Hi stef,
is there any information about their work, their theory,
something helping to slow down the symp'
[/quote]
Hi Outsider,
First of all, how are you doing? Have you had any improvement with the dystonia? Are you still considering the Botox injections?
(Botox has been used with good results in many people with different types of dystonia. That's just an FYI to you and the other forum members.)
There's no information/results to report about the POIS research yet. They are about to contact a few applicants (possibly 2) to participate, and it seems they are going to first choose men who live relatively close to Rutgers University. They are being very cautious at this early stage. As frustratingly slow as this has been going, at least you all can be certain that Dr. Komisaruk is taking none of this casually.
As you know, Dr. Komisaruk's theory is that abnormal vagus nerve response might cause the symptoms of POIS. The study will examine the vagus nerve response after ejaculation in men with POIS (compared to men without POIS).
I wish there were more to report, Outsider.
Please let us know how you're doing, especially with that awful drug-induced dystonia. I wish I spoke French!
Best wishes,
Stef
[/quote]
Bonjour Stef,
Many thancks for your sweet messsage,
i m pretty bad sick since a couple of days, i don't know what's going on,
pb from medication or food, not easy to speak in english with my brain fog
I need to fix this illness for this year, it's getting too hard
A bientot,
Outsider
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Guys what's new in the study Komissaruk