POISCENTER
General Category => POIS Research => Topic started by: Stef on April 03, 2013, 01:51:58 PM
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Hi, Everyone!
We've just posted our 2013 RFPs (Requests for Proposals).
I want to explain to you all that research RFPs are purposely written in a somewhat brief, broad style -- so as to attract a wide cross-section of specialists and scientists.
Your RFP mentions the more prominent symptoms of POIS, and is also written in a way that will interest researchers from varying fields of medicine. If a particular symptom that some of you are struggling with is not mentioned in the RFP, please don't think that it's not considered important!
Since we don't know what POIS is, the field is WIDE OPEN!!
I did show the RFP to demografx and Daveman, and both were comfortable with the final version. They will be compiling some important data in the near future, culled from your posts and surveys, and I'll be forwarding that data to NORD's Medical Advisory Committee (MAC). This will provide NORD's MAC with information about POIS that cannot be found anywhere but on your forum and the NSF POIS thread. This data will provide more specific information about the symptoms of POIS, how POIS manifests itself, and about some of the treatments that have been found to be helpful to some of you.
Here's the link to the POIS RFP -- (http://www.rarediseases.org/docs/research-grants/POIS.doc)http://www.rarediseases.org/docs/research-grants/POIS.doc.
Here's the link to our RFP page, which shows all of the research grants being offered this year -- http://www.rarediseases.org/medical-professionals/research-grants/rfps
Besides posting this on NORD's website, we'll also be sending many individual emails and e-blasts to researchers who we feel might be good candidates. You are also free to forward/copy and send the POIS RFP to anyone -- scientist, relative, friend, etc -- to help get word out about your grant.
Congratulations!!
Stef
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Thank you, Stef!
Your work and dedication on our behalf is incredible!
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The RFP looks great! Thanks Steph and team!
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Here's the link to the POIS RFP -- http://www.rarediseases.org/docs/research-grants/POIS.doc.
You are also free to forward/copy and send the POIS RFP to anyone -- scientist, relative, friend, etc -- to help get word out about your grant.
Congratulations!!
Stef
I sent the links to my endocrinologist and primary care physician, who helped me fight POIS successfully.
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Has anyone sent this to Dr. Waldinger yet?
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The symptoms description part was perfect. It touch all the main point.
Hopefully there some excited scientist willing to work with POIS.
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CertainlyPOIS, I have no doubt that will happen. :)
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Thank you Stef, Demo and Dave!
Thank you to all the people that shared their time, work and money to make POIS research a reality!
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Thank you Stef, Demo and Dave!
Thank you to all the people that shared their time, work and money to make POIS research a reality!
Thank you, Mat!!
Your POIS websites and financial, emotional support: you are a #1 contributor to POIScenter.com!
Mat780's teriffic POIS resources can be found here:
http://poiscenter.com/forums/index.php?topic=1.msg1#msg1
At the above site: look for the followling links below to Mat's websites!
1. "Click here to see Mat780's excellent YouTube POIS Channel. 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". "
http://m.youtube.com/#/user/POISchannel/videos?&desktop_uri=%2Fuser%2FPOISchannel%2Fvideos
2. "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."
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Here's the link to the POIS RFP -- http://www.rarediseases.org/docs/research-grants/POIS.doc
== OR ==
TINY URL (LINK) FOR POIS RFP:
(copy/paste/send)
http://tinyurl.com/bwhbn5k
You are also free to forward/copy and send the POIS RFP to anyone -- scientist, relative, friend, etc -- to help get word out about your grant.
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Stef ("nordnurse") informs us "Thousands -- literally -- receive "NORD" google alerts. :-) "
TODAY!
---------- Forwarded message ----------
From: Google Alerts <googlealerts-noreply@google.com>
Date: Wed, Apr 10, 2013 at 12:37 AM
Subject: Google Alert - post orgasmic illness syndrome
To: demografx
Web 1 new result for post orgasmic illness syndrome
POIS - National Organization for Rare Disorders
Announces. Research Seed Grant Funding for one, one-year grant ($31,000) for. Post-Orgasmic Illness Syndrome (POIS). Submission Deadline: May15, 2013 ...
www.rarediseases.org/docs/research-grants/POIS.doc
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Has anyone sent this to Dr. Waldinger yet?
Send it to him!
If it's already been sent, multiple copies can't hurt anything. :)
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This is the email I sent to Dr. Waldinger just now:
Hello Dr. Waldinger,
This is concerning POIS. Recently our group has raised enough money to fund a small research study($31,000 seed grant) for POIS through the National Organisation for Rare Disorders(NORD) and I thought it would be a good idea to let you know in case you were interested in applying for the grant. Applications are being accepted now until the submission deadline on May 15, 2013. The detailed information about the research grants being offered this year, including the one for POIS, is on the NORD website on the page titled Requests for Proposals, which is located at this link:
http://www.rarediseases.org/medical-professionals/research-grants/rfps
Here is the direct link to the NORD document that outlines the application procedure and other details: http://www.rarediseases.org/docs/research-grants/POIS.doc
I just realized it's only about a month until the deadline.
-Vincent
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Vincent, excellent letter!
Perhaps other members can adapt it to their own passalongs!
Best regards,
Demo
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Awesome email! Hope that money is put to good use.
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Good job! The symptom description is quite accurate.
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This is the most exciting/hopeful time I've seen since the forums began in 2007!
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very nice... one day, it's my goal to do research on POIS... I wanna contribute! Is there anything other than donation that I can do to help as in the research aspects? I am a PhD fellow with an NIH grant!
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very nice... one day, it's my goal to do research on POIS... I wanna contribute! Is there anything other than donation that I can do to help as in the research aspects? I am a PhD fellow with an NIH grant!
Wonderful and inspiring goal.
My urologist - affiliated with a major research hospital - has already expressed interest in applying to the RFP!
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We did it! $31,000 POIS Grant!
(http://www.registeredevil.com/wp-content/uploads/2010/09/Happy-Birthday-Animated-86-7YMVHYA2NJ.gif)(http://www.registeredevil.com/wp-content/uploads/2010/09/Happy-Birthday-Animated-86-7YMVHYA2NJ.gif)(http://www.registeredevil.com/wp-content/uploads/2010/09/Happy-Birthday-Animated-86-7YMVHYA2NJ.gif)(http://www.registeredevil.com/wp-content/uploads/2010/09/Happy-Birthday-Animated-86-7YMVHYA2NJ.gif)
Pass it on! Show the world!
http://tinyurl.com/bwhbn5k
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You are also free to forward/copy and send the POIS RFP to anyone -- scientist, relative, friend, etc -- to help get word out about your grant.
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Dr. Waldinger responded to my email about the grant:
"Dear Vincent,
Thank you very much for your e-mail and information. What a wonderful accomplishment to raise 31000 US Dollars. I will certainly try to submit a proposal as I urgently need money to continue our research on POIS.
I appreciate your e-mail and in case of any news, do not hesitate to send me an e-mail. Unfortunately, I am too busy with all sorts of other activities so that I have no time to follow or look at your internet website.
With best regards,
Prof. dr. Marcel D. Waldinger"
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From Stef/"nordnurse" today:
= = = = = = = = = = = = = = = = = = = = = = = =
"Guys,
You've received some NICE [grant] applications!!!!! :-)
(I can't say "great applications" because I can't judge them -- and haven't even had the time yet to check them for completeness before sending them to our MAC.)
Just thought you'd want to know. :-)
Yes -- you can post -- I can't give out specifics -- can't name names or advise exactly how many applications were received. But I can tell you -- -- this is GREAT for rare disease RFPs -- especially one like POIS where no one knows what the hell it is!!!!!
Later!"
= = = = = = = = = = = = = = = = = = = = = = = =
Yay!!!!!
Demo
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From Stef/"nordnurse" today:
= = = = = = = = = = = = = = = = = = = = = = = =
"Guys,
You've received some NICE [grant] applications!!!!! :-)
(I can't say "great applications" because I can't judge them -- and haven't even had the time yet to check them for completeness before sending them to our MAC.)
Just thought you'd want to know. :-)
Yes -- you can post -- I can't give out specifics -- can't name names or advise exactly how many applications were received. But I can tell you -- -- this is GREAT for rare disease RFPs -- especially one like POIS where no one knows what the hell it is!!!!!
Later!"
= = = = = = = = = = = = = = = = = = = = = = = =
Yay!!!!!
Demo
GREAT! :D
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It's exciting, nenexx :)
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was waiting for some developments
very happy to hear it
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It's sooo unfair that friends of mine can have as much sex as they want and get no symptoms! :P
Don't think that your friends have no problems. They just got lucky with POIS. Who knows what "nightmares" some of your friends have in other parts of their lives, medical and otherwise. You don't know because people don't usually "brag" about their Special Miseries.
Comparing to others is not usually helpful, whether you're better or worse.
Just be the best Prancer you can be!!
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FROM STEF/"nordnurse" Today
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"I received an email from a researcher this past Friday -- asking if it was too late to apply for the POIS grant. He'd only just found out about the grant from a colleague, knew the deadline had passed, but was eager to apply. He wasn't on our researcher list. (Often -- this is exactly what happens. Researchers apply because they hear about the RFP from a colleague -- either they collaborate, or the first one isn't interested but is passing on the information.)
I advised him to send his application -- we'd get it to our MAC.
I'm not at all surprised at the response that the POIS grant has generated -- I had no doubts. There was never a worry about this (on my part) -- although I know that it probably had been a worry for you and the forum members.
POIS is such a vast unknown right now, and seems to involve multiple organ systems and multiple biological pathways. It's exactly the type of disorder that would interest a broad range of researchers. I'm betting that there is one, main cause -- leading to the various, miserable symptoms that some with POIS develop and some don't develop. But there are enough symptoms in common to definitely call it a "syndrome."
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what is the best place to share my symptoms... the place where my info will be taken into account and added to the database of facts? thank you...
Use this link, and post there, thanks:
http://poiscenter.com/forums/index.php?topic=81.0
You can help our POIS Research Grant reviewers and medical researchers with this information. Thanks.
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Excellent guys, It's an exciting time for all of us, don't you think? ;D ;D
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Hello...
I gave up this treatment.
I found no advance in nearly 18 months. Nothing, absolutely nothing.
I won't go again just to pay for a treatment that just makes me feel sick, giving me a kind of "voluntary" POIS.
I'm tired... I'm sorry guys. This is not working for me and I shall try to live with this nightmare.
You can reach me in my e-mail i case you need information or something else.
Regards,
JP
[Stef's reply to JP below]
Hi JP and Everyone!
First of all -- to all of you -- you have received more than just a few applications for your POIS grant!!! I'm not in a position to judge them, and am not allowed to say exactly how many, from whom, etc. (This is the general request of all researchers applying for any grant, and has become a very a strong guideline at NORD). But -- these applications are SERIOUS!! That I can comfortably tell you without breaking any of the rules.
You've got experienced researchers who want to understand POIS!! They're willing to do the work -- they actually WANT to do the work!! The dedication comes right through their applications, loud and clear.
(But that's all I can say -- better quit while I'm ahead!)
Second -- JP, don't let this experience leave you feeling hopeless or down-trodden. Don't be sorry about anything! Yes, you are going to have to "live with this nightmare," a little longer. (It really is quite a nightmare!!!!)
But POIS will be understood -- and the answers/treatment will follow -- perhaps very quickly. (Honestly -- I just do not think you're going to be waiting long.)
Try to keep remembering -- at this moment, no one knows what POIS is! You're all on the way to finding out through your research grant, but right now -- there's no answer -- nothing!
Dr. Waldinger, who put POIS on the map, without question would agree. No one knows what POIS is.
(I know -- I sound like a broken record!)
Without ever having communicated with Dr. Waldinger -- he is a scientist, and would agree -- there has been no sound, scientific research. He has a hypothesis that POIS is an allergic condition -- which may or may not be on track.
(FYI -- I write this with complete, total respect for Dr. Waldinger and his team!)
Without funding, there's no research -- and with no research, there are no answers. It's just that simple.
And now you've got the funding for the research. :)
There has never before been funding for POIS research -- do you all realize this??!!!! So many of you men on this and the other forum donated what you could -- and with the constant encouragement of demografx and Daveman -- you all pulled together and did it! Demo and Daveman never gave up on encouraging everyone -- and they both walked the walk, also!
(I think demo has amassed a secret stash of animated gifs -- just for POIS donations!)
The question, "What is POIS" -- will likely be answered very soon.
So, JP -- and everyone -- stay strong -- and believe in your strength. Do not give up seeking treatments to tide you over until the true answers are discovered.
Please just be safe and careful while finding ways to get yourselves through this misery.
The answers are around the corner!
Stef
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Excellent guys, It's an exciting time for all of us, don't you think? ;D ;D
Absolutely! ;D ;D
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Everybody, we can help out the research process by going here
http://tinyurl.com/k9noay9
and telling the researchers what POIS is.
What has helped you.
What makes it worse.
This is our opportunity to have a voice.
[
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The answers [to POIS] are around the corner!
Stef
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Just sent this email to the doctors of the recent case study:
Hello Drs. Attia and Yasien,
This is concerning POIS. Recently our group at poiscenter has raised enough money to fund a small research study($31,000 U.S. dollar seed grant) for POIS through the National Organization for Rare Disorders(NORD) and I thought it would be a good idea to let you know in case you were interested in applying for the grant. The submission deadline was May 15, but NORD will give you an extension.The detailed information about the research grants being offered this year, including the one for POIS, is on the NORD website on the page titled Requests for Proposals, which is located at this link:
http://www.rarediseases.org/medical-professionals/research-grants/rfps
Here is the direct link to the NORD document that outlines the application procedure and other details for the POIS grant: http://www.rarediseases.org/docs/research-grants/POIS.doc
-Vincent M
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Thanks, Vincent M!
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So, I'm new here and I don't quite understand: are donations for research still needed?
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So, I'm new here and I don't quite understand: are donations for research still needed?
This first phase of research is to establish WHAT POIS is and hopefully establish a direction. We hope that this first phase puts POIS on a MAP that the medical profession will respect.
With that will come more research, unless we are fantastically lucky to be able to actually trip over a final solution immediately.
Once this seed project has terminated, we will be open to more official government grant programs and institutional donations, however we have already accepted donations for the next grant phase, so YES, we are still accepting donations, but they will go to a second program, that may well work in parallel with other funding.
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Where does one contribute now: directly to NORD or somewhere else? So is there a non-profit org established? Then people may give more because the donations are tax-deductible.
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Where does one contribute now: directly to NORD or somewhere else? So is there a non-profit org established? Then people may give more because the donations are tax-deductible.
Contributions still go to NORD for 2nd program as Daveman describes above:
https://www.rarediseases.org/about/support/research-donations/fg_base_view_p3
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You have received more than just a few applications for your POIS grant!!! These applications are SERIOUS!!
You've got experienced researchers who want to understand POIS!! They're willing to do the work -- they actually WANT to do the work!! The dedication comes right through their applications, loud and clear.
To me, this is the happiest news ever since the forums started in 2007! :) :) :)
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IF THE RESEARCH GETS TO THE POINT.....
where they need to poke and prod and disect a live patient.... even as far as brain tissue, i will volunteer. free of charge.
seriously, you got any other live people who will throw themselves on a slab and let em slice n dice for research POIS purposes?
so keep me in mind. i am offering.
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Um, i doubt you'd have to get slice'n'diced for anything.
You'd probably just have to [mod edit:] masturbate once in a while while trying different meds or treatments.
Which, sounds fine for everyone in the world...except us POIS dudes....
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We did it! $31,000 POIS Grant!
(http://www.registeredevil.com/wp-content/uploads/2010/09/Happy-Birthday-Animated-86-7YMVHYA2NJ.gif)(http://www.registeredevil.com/wp-content/uploads/2010/09/Happy-Birthday-Animated-86-7YMVHYA2NJ.gif)(http://www.registeredevil.com/wp-content/uploads/2010/09/Happy-Birthday-Animated-86-7YMVHYA2NJ.gif)(http://www.registeredevil.com/wp-content/uploads/2010/09/Happy-Birthday-Animated-86-7YMVHYA2NJ.gif)
Pass it on! Show the world!
http://tinyurl.com/bwhbn5k
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IF THE RESEARCH GETS TO THE POINT.....
where they need to poke and prod and disect a live patient.... even as far as brain tissue, i will volunteer. free of charge.
seriously, you got any other live people who will throw themselves on a slab and let em slice n dice for research POIS purposes?
so keep me in mind. i am offering.
Defsync, you have been offering your services to the POIS cause for many years now.
It is greatly appreciated!! :)
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Daveman and I have been advised the following about our POIS grant.
The initial abstracts have been reviewed and scored by NORD's MAC.
There are some very strong finalists for the POIS grant. They will be submitting lengthy, in-depth proposals.
No news will be available until the final decision in late November/early December.
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Hey,
Som news here ? When do we know more about it ?
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Late November we will know who the finalist is. Don't really know who's in the running, only that we would be happy with any one of them.
The proposals that they must offer now spell out their plan in detail. (These proposals are revised by the Medical Advisory Committee) Unfortunately this information is not available to anyone else!
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It's OCTOBER -- in one more month, we're inching ever closer to the final selection-decision of POIS Researcher selected by NORD's prestigious MAC!
Hopefully it will be closer to late November rather than early December.
Nice Christmas present to us all!!
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Any news on how the POIS research is going with the $30,000 NORD grant? Or any news on when there will be some more news?
hello
demografx
When will the [POIS] research [begin with NORD]?
thank you
This December.
I should be getting an update first week in December, maybe not who or what yet, but they are in the final throes of choosing the researcher.
So very soon we should know.
The first real professionally administered and controlled research on POIS.
Whatever the results, it will have to be useful.
I'll let you all know when the news comes out.
daveman
I and my Russian friends will be waiting impatiently
thank you
Thank you, Daveman!
This is a H I S T O R I C moment for all POISers!!!
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:) :) :)
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Hi everyone. Sorry Ive been so MIA for the past several months. Ive been busy (finished my masters degree, moved, started a new job) and my computer crashed. Looks like Im going to be using my smart phone for forum access for a while, which is far from ideal. Unless theres a POIS app out there somewhere :). Any news on the RFP? Im way behind on POIS news. It sounds super promising though. Well done everyone!
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Hi, Hoping!
Daveman will be reporting on Research progress very soon.
Stay tuned! :)
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POIS GRANT AWARDED/ACCEPTED 5:00 PM EST THURSDAY EVENING!
Barry Komisaruk, PhD from Rutgers University in New Jersey, is the award recipient and the Principal Investigator for the first formal POIS study. He will be working in conjunction with an MD from Rutgers.
The research will focus on fMRI's in men with POIS, will include control subjects for comparison, and will examine brain function before, during and after orgasm.
The purpose of the study is to observe reactions and structural changes that may be occurring in the brains of POIS sufferers -- changes which explain the severe cognitive impairments of POIS, and also potentially explain the general physical reactions as a whole (pain, headache, severe fatigue, as examples).
If brain reactions are found, this will lead to determining the cause of POiS -- but more importantly -- may well elucidate treatments that are available now-- to counteract these changes.
Landmark study!!!! More to follow!!!!
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Wow, just WOW! An fMRI study is FANTASTIC. This is cutting edge stuff that only a TRUE research institution would be able to provide! I'm really excited, I was born in New Jersey where Rutgers is, and still have family that live there. It would be fairly easy for me to get there!
Thanks for the great news ;D
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Thanks for the news! All of us grant donors and suffers have been waiting patiently Demo!
If test subjects are needed for the study I'm willing and able to fly to New Jersey periodically.
Here's to hoping this is the beginning of the end :)
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(http://i858.photobucket.com/albums/ab143/demografx/0F3CA958-398F-4358-BE6C-48C87BEE2564.jpg)
Book available @ Amazon
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Here's a short bio on our 'investigator':
About Barry Komisaruk
Barry Komisaruk studies the function of nerve pathways for sexual stimulation in women who have suffered spinal cord injury. He and fellow researchers at Rutgers published the first evidence of brain regions involved in orgasm in women. Also, he has co-published a comprehensive review of neurological, pharmacological, hormonal, and health aspects of orgasm in "The Science of Orgasm."
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Thanks, Limejuice!!!
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Wow, just WOW! An fMRI study is FANTASTIC. This is cutting edge stuff that only a TRUE research institution would be able to provide! I'm really excited, I was born in New Jersey where Rutgers is, and still have family that live there. It would be fairly easy for me to get there!
Thanks for the great news ;D
Thanks, Nightingale! We will need you!
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Thanks for the news! All of us grant donors and suffers have been waiting patiently Demo!
If test subjects are needed for the study I'm willing and able to fly to New Jersey periodically.
Here's to hoping this is the beginning of the end :)
Yes! Let's hope we'll find a silver bullet with the best POIS treatment(s) that medical research/technology has to offer!
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POIS GRANT AWARDED/ACCEPTED 5:00 PM EST THURSDAY EVENING!
Barry Komisaruk, PhD from Rutgers University in New Jersey, is the award recipient and the Principal Investigator for the first formal POIS study. He will be working in conjunction with an MD from Rutgers.
The research will focus on fMRI's in men with POIS, will include control subjects for comparison, and will examine brain function before, during and after orgasm.
The purpose of the study is to observe reactions and structural changes that may be occurring in the brains of POIS sufferers -- changes which explain the severe cognitive impairments of POIS, and also potentially explain the general physical reactions as a whole (pain, headache, severe fatigue, as examples).
If brain reactions are found, this will lead to determining the cause of POiS -- but more importantly -- may well elucidate treatments that are available now-- to counteract these changes.
Landmark study!!!! More to follow!!!!
Hi Everyone!
Congratulations!!!
This is really, really wonderful news!!!
Dr. Komisaruk is an exceptional researcher, and is a true expert on fMRIs. In case you haven't seen his curriculum vitae, here's the link -- http://nwkpsych.rutgers.edu/~brk/komisarukcv.pdf.
The Rutgers University Board of Governors named Dr. Komisaruk "Distinguished Service Professor" -- one of the highest honors that the university can bestow upon a professor. To receive this honor, a researcher must demonstrate exceptional intellectual/research ability -- and unquestionable ethics. I thought you'd like to know this.
NORD will be advising demografx and Daveman of the exact title of Dr. Komisaruk's study, and will also advise them of the name of his Co-Investigator (an MD)... so that they can advise all of you. There will also be information provided about how to become enrolled in the study. It will probably take at least a few weeks to get all of the required paperwork to NORD (Rutgers' Internal Review Board approval and a copy of the Patient Consent Form are essential).
I'm very, very happy for all of you!
Stef
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THANK YOU, STEF,FOR BRINGING US TO THIS MAJOR HISTORIC POIS MILESTONE!!!!
xo,
Demo
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Its a very great news.
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Yes, Bulbo, it is! :)
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Thank you Demo for this wonderful Chrimas present !
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A potentially great day and very exciting.
Well done and congratulations to Daveman, Demo and other forum founders, who brought all this about and who support the community here, with no material or personal rewards.
A day of hope for all the courageous guys who have lived with POIS. Good luck to the research team in 2014.
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On our way. Respect for everybody who made this possible!
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Thank you Demo for this wonderful Chrimas present !
And great thanks to you, b_jim, for all your wonderful work and support on behalf of POIS! Since 2007! You are an Early Founder.
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(http://i858.photobucket.com/albums/ab143/demografx/528EC022-1FC1-4DDF-9AE7-C509DC5612EF_1.jpg)
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:) Congrats and welcome to Dr Komisaruk! I would definitely consider flying to New Jersey from the UK to take part in the research if it is practical for the study. Thanks for the info Stef.
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Mellivora, thank you profusely for your support all these years which helped make this happen!
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A potentially great day and very exciting.
Well done and congratulations to Daveman, Demo and other forum founders, who brought all this about and who support the community here, with no material or personal rewards.
A day of hope for all the courageous guys who have lived with POIS. Good luck to the research team in 2014.
Thank you, Colm!!
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On our way. Respect for everybody who made this possible!
Thank you, poiseidon!!
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hey demo. can you tell how to post pictures like you do? not as attachments ;-)
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hey demo. can you tell how to post pictures like you do? not as attachments ;-)
[img w idth=400 height=400]http://www.poiseidonpic.com[/img]
1. CLOSE the gap above between "w" and "idth" (WIDTH).
2. Try 400/400 then readjust as needed from preview.
3. Use ANY image URL, e.g., Google Image search result(s).
Like this:
(http://poiscenter.com/forums/index.php?action=dlattach;topic=1012.0;attach=290)
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He seems like he'll be great!!!! This is such fantastic news guys! So excited! Best. Xmas. EVER!!
(http://assets-cloud.enjin.com/users/4555660/avatar/medium.1381524773.png)
(http://assets-cloud.enjin.com/users/4555660/avatar/medium.1381524773.png)
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Thank you Demo for this wonderful Chrimas present !
And great thanks to you, (http://i858.photobucket.com/albums/ab143/demografx/355DE6CE-72FC-40A3-8871-6621D9C1D0AD.jpg) for all your wonderful work and support on behalf of POIS! Since 2007! You are an Early POIS Forum Founder!!
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Excellent news , i'm recovering from the foot neuropathy caused probably b3 and b6 .. I fought my whole against this disease and against the doctors that i was crazy, the pois must be defeated! Enough! Merry Christmas Greetings from Italy, if you need me please contact me via the web to any test.
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Thanks to all who made this possible. Now HOPE has a name, BARRY KOMISARUK!! :)
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This is ideal. NORD (and steff!) really pulled through for us. I live in upstate new york so I should be able to make it there if I qualify to be a test subject.
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I live in upstate new york
! Awesome!
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Thank you Demo for this wonderful Chrimas present !
And great thanks to you, (http://i858.photobucket.com/albums/ab143/demografx/355DE6CE-72FC-40A3-8871-6621D9C1D0AD.jpg) for all your wonderful work and support on behalf of POIS! Since 2007! You are an Early POIS Forum Founder!!
Indeed if these doctors have chosen to concentrate their energy on MRI's they probably conjecture what we said since 2007 is right.
I think we have now the technology to see the activity on brain of some meds like anti-depressants. If Pois cause unbalanced levels of some neurotransmitters, we could have the hope they will see it.
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Excellent point, b_jim!
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I am happy that we have got a name now. So let's support Dr. Komisaruk in every way we can.
I want to thank everybody that contributed to the POIS Grant.
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Videos by Dr. Barry Komisaruk:
http://bigthink.com/users/barrykomisaruk
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^In one of his videos Dr. Komisaruk mentions that women can think themselves to orgasm. I never knew this, how freaking cool is that!
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What a coincidence. . . I go to Rutgers University... but not the Newark Campus, rather the New Brunswick one.
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^In one of his videos Dr. Komisaruk mentions that women can think themselves to orgasm. I never knew this, how freaking cool is that!
;D
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What a coincidence. . . I go to Rutgers University... but not the Newark Campus, rather the New Brunswick one.
Great! You're close enough!! :)
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Wow, you're extremely close GLC. This is great!! Really, really nice of you to volunteer!
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Wow, you're extremely close GLC. This is great!! Really, really nice of you to volunteer!
I don't think he said that he'd volunteer yet ;D
Did u, GLC?
:)
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Hi Stef,
can I ask you how many applications have been examined by NORD, and from which field of medicine were most of the submissions?
TNKS
poiseidon
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hey demo. can you tell how to post pictures like you do? not as attachments ;-)
[img w idth=400 height=400]http://www.poiseidonpic.com[/img]
1. CLOSE the gap above between "w" and "idth" (WIDTH).
2. Try 400/400 then readjust as needed from preview.
3. Use ANY image URL, e.g., Google Image search result(s).
Like this:
(http://poiscenter.com/forums/index.php?action=dlattach;topic=1012.0;attach=290)
Great thanks!
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Wow, you're extremely close GLC. This is great!! Really, really nice of you to volunteer!
I don't think he said that he'd volunteer yet ;D
Did u, GLC?
:)
Oops, you're right. Well I think he'd be willing to volunteer, right glc? If not, that's okay, I'm sure others live pretty close (even if it's not THAT close lol).
PS: Keep calm and Barry Komisaruk! =D (I love that line, haha)
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Wow, you're extremely close GLC. This is great!! Really, really nice of you to volunteer!
I don't think he said that he'd volunteer yet ;D
Did u, GLC?
:)
Oops, you're right. Well I think he'd be willing to volunteer, right glc? If not, that's okay, I'm sure others live pretty close (even if it's not THAT close lol).
PS: Keep calm and Barry Komisaruk! =D (I love that line, haha)
Haha funny prancer. . thanks for volunteering me. If it came down to it, I don't think I would have a problem volunteering. The only obstacles would be school, and if I am a viable candidate. I know some of us have different symptoms. I can pretty much say all my symptoms are neurological/cognitive... in other words I don't get any physical symptoms, other than eyes turning red (sometimes I sneeze here and then, but may be unrelated to POIS). But I just get extreme "brain" discomfort after "O", right where you feel the "O" in your head, lasting about a couple days now, which used to be weeks. There would also be many questions that would have to be answered like . . how long would this research take, what days. . etc. I would also not want to disappoint any of you guys if the research failed to find anything, even though I am 100% sure something is wrong. But maybe we should think this through.
Also you know what the research involves. . . O'ing without taking anything beforehand. . . AHHHH
But viewing Barry's techniques of using fmri's on the brain, I do think I would be a good candidate
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Thanks, GLC! :)
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Keep calm and Barry Komisaruk! =D (I love that line, haha)
;D
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I live in upstate new york
! Awesome!
Yes! :)
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Is there a deadline to complete the study and if so when would it be set?
FB
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Wow, you're extremely close GLC. This is great!! Really, really nice of you to volunteer!
I don't think he said that he'd volunteer yet ;D
Did u, GLC?
:)
Oops, you're right. Well I think he'd be willing to volunteer, right glc? If not, that's okay, I'm sure others live pretty close (even if it's not THAT close lol).
PS: Keep calm and Barry Komisaruk! =D (I love that line, haha)
Haha funny prancer. . thanks for volunteering me. If it came down to it, I don't think I would have a problem volunteering. The only obstacles would be school, and if I am a viable candidate. I know some of us have different symptoms. I can pretty much say all my symptoms are neurological/cognitive... in other words I don't get any physical symptoms, other than eyes turning red (sometimes I sneeze here and then, but may be unrelated to POIS). But I just get extreme "brain" discomfort after "O", right where you feel the "O" in your head, lasting about a couple days now, which used to be weeks. There would also be many questions that would have to be answered like . . how long would this research take, what days. . etc. I would also not want to disappoint any of you guys if the research failed to find anything, even though I am 100% sure something is wrong. But maybe we should think this through.
Also you know what the research involves. . . O'ing without taking anything beforehand. . . AHHHH
But viewing Barry's techniques of using fmri's on the brain, I do think I would be a good candidate
Yep, still some open questions like what the research would entail exactly and for how long. Those questions might be answered in the next few days/weeks or so. (Plus, no one wants you to do something if you're not 100% comfortable and happy with it either.)
No worries though, there's still plenty of time to discuss and get more details.
------------
Also:
Happy New Year everyone!
2014 looks to me like the best year EVER for finally getting the cure we've all been waiting for!! *fingers crossed*
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Is there a deadline to complete the study and if so when would it be set?
FB
Yep, still some open questions like what the research would entail exactly and for how long. Those questions might be answered in the next few days/weeks or so. (Plus, no one wants you to do something if you're not 100% comfortable and happy with it either.)
No worries though, there's still plenty of time to discuss and get more details.
------------
Also:
Happy New Year everyone!
2014 looks to me like the best year EVER for finally getting the cure we've all been waiting for!! *fingers crossed*
Please see
http://poiscenter.com/forums/index.php?topic=426.msg11163#msg11163
Happy New Year!
Daveman
Demo
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Cheers. happy New Year!
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Daveman & Demo,
Thanks for updates on progress. This offers so much hope for 2014 and beyond. Very exciting.
Was reading a paper from Barry Komisaruk, in regard to some of his previous work in this area, with women. If anyone can advance research about POIS, I am sure others agree, we couldn't have imagined anyone with more credentials to validate things. Well done NORD and Stef too.
Pages 15-20 in this document show how complex the area is, so hopefully there'll be possibilities to get enough research data from sufferers. http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.177.782&rep=rep1&type=pdf
I'd be happy to input also in the study, but am 6,000 miles from the action there at Rutgers, but perhaps us Europe and non US based community members could get local data via MRI to input. Just a thought. Might require private health insurance in some countries. You may have enough people in East Coast USA.
Happy New Year guys!
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Daveman & Demo,
Thanks for updates on progress. This offers so much hope for 2014 and beyond. Very exciting.
Was reading a paper from Barry Komisaruk, in regard to some of his previous work in this area, with women. If anyone can advance research about POIS, I am sure others agree, we couldn't have imagined anyone with more credentials to validate things. Well done NORD and Stef too.
Pages 15-20 in this document show how complex the area is, so hopefully there'll be possibilities to get enough research data from sufferers. http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.177.782&rep=rep1&type=pdf
I'd be happy to input also in the study, but am 6,000 miles from the action there at Rutgers, but perhaps us Europe and non US based community members could get local data via MRI to input. Just a thought. Might require private health insurance in some countries. You may have enough people in East Coast USA.
Happy New Year guys!
Thanks, Colm! You and I are close in longterm misery/history of suffering with POIS!
I'm happy to know I'm not the only one suffering POIS that long! ;D
Happy New Year, guys!
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I reckon 24 years of 7/8 days POIS symptoms cycles could hit you just as hard. Ouch!
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Daveman & Demo,
Thanks for updates on progress. This offers so much hope for 2014 and beyond. Very exciting.
Was reading a paper from Barry Komisaruk, in regard to some of his previous work in this area, with women. If anyone can advance research about POIS, I am sure others agree, we couldn't have imagined anyone with more credentials to validate things. Well done NORD and Stef too.
Pages 15-20 in this document show how complex the area is, so hopefully there'll be possibilities to get enough research data from sufferers. http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.177.782&rep=rep1&type=pdf
I'd be happy to input also in the study, but am 6,000 miles from the action there at Rutgers, but perhaps us Europe and non US based community members could get local data via MRI to input. Just a thought. Might require private health insurance in some countries. You may have enough people in East Coast USA.
Happy New Year guys!
Thanks, Colm! You and I are close in longterm misery/history of suffering with POIS!
I'm happy to know I'm not the only one suffering POIS that long! ;D
Happy New Year, guys!
Appreciate the acknowledgement Demo.
As your signature says "Married, raised a family, started a business". Similar here, but all would have been a lot easier and a happier journey, without this shi**y condition for a lifetime. Am sure you feel something similar.
Great to be sharing the journey with people who have some understanding of this.
Best of regards.
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As your signature says "Married, raised a family, started a business".
Similar here, but all would have been a lot easier and a happier journey, without this shi**y condition for a lifetime. "
Am sure you feel something similar.
Absolutely right on the money, Colm! :)
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Hi,
I contacted Dr David Goldmeier (who co-wrote a POIS paper which can be obtained by the forum admin: Demgrafx/Daveman) to let him know about the new study in New Jersey. I have met Dr G a couple of times (appointments). His response today was:
"Many thanks for letting me know.
Barry has an excellent track record of top rate research
Be well
DG"
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Barry has an excellent track record of top rate research
Be well
Glad to hear that :)
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Very happy to see the co-author of "The Science of Orgasm" Barry Komisaruk will be doing POIS research!
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Hi,
I contacted Dr David Goldmeier (who co-wrote a POIS paper which can be obtained by the forum admin: Demgrafx/Daveman) to let him know about the new study in New Jersey. I have met Dr G a couple of times (appointments). His response today was:
"Many thanks for letting me know.
Barry has an excellent track record of top rate research
Be well
DG"
Maybe the 2 docs could team up somehow as sub-contractors on our Grant? I sense flexibility with Team Rutgers.
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Hi Demo,
David works for the NHS which is the UKs National Health Service and I think he may have the pressures of his day to day which means he could be limited in how much time he can dedicate professional research. Research is not his full-time job. Although to be honest I don't know. We can always ask. Let me know if you need me to do anything on your behalf. I would happilly fill any gaps if there was any admin work needed to be done in the UK to help bring this together.
On a side note, Dr Dexter said to me a few months back that he would like to do POIS research but he just hasn't got the time with his NHS job. I spoke to him on the phone today and he thanked me for sending the details of the new research program. If he has anything interesting to say when I meet him on Tuesday and will share it.
Actually I'm due to see David Golmeier as well but I postpone my appointment because he was on about have a joint session with him and a behavioural/cognitive specialist. The idea very turned me off to honest. At the time I was more focused on finding someone to do a subcutanious semen skin prick test. I found someone in the end and the results were negative. Dr Dexter is very keen for me to have this session with Dr Goldmeier and the behavioural specialist.
Thanks FloppyB
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Hi Demo/Daveman,
I spoke to Dr Dexter yesterday and he advised me even though he is a busy man he has no objection in being approached as part of the new POIS study. He was grateful for keeping him up to date of the study. I have a good relationship with Dr Dexter and I think a big part of that is that he does not have some theory that he is trying to validate.
Thanks FloppyB
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Very happy to see the co-author of "The Science of Orgasm" Barry Komisaruk will be doing POIS research!
YES!! :)
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The research group at Rutgers University-Campus at Newark has just received a grant from the National Organization of Rare Diseases (NORD) to characterize the physical and cognitive symptoms of POIS and test for possible vagus nerve involvement. Upon making all the necessary preparations for the study (which will take approximately 2 months) we will post here a detailed description of the research procedures and a
consent form for your possible participation. In the meantime, if you have questions, please feel free to contact us.
Pooja Lakshmin, MD plakshmin@psychology.rutgers.edu
Barry R. Komisaruk, Ph.D. brk@psychology.rutgers.edu
[cross-posted from Rutgers Research Announcement]
http://poiscenter.com/forums/index.php?topic=1225.msg11331#msg11331]
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^In one of his videos Dr. Komisaruk mentions that women can think themselves to orgasm. I never knew this, how freaking cool is that!
Men, too?
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^In one of his videos Dr. Komisaruk mentions that women can think themselves to orgasm. I never knew this, how freaking cool is that!
Men, too?
I tried it once.... no luck
The closest success I had was in a lucid dream! (very similar to an NE obviously)
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FROM NORD
On Feb 6, 2014, at 12:11 PM, Jason Barron at NORD wrote:
Dear Demo and Daveman,
The announcements for 2013 NORD research grant award recipients have been posted on NORD’s website. For easier navigation and retrieval, I’m including a link to the updated content, here: https://www.rarediseases.org/medical-professionals/research-grants/recipients. Please note that the announcement for the POIS category indicates the sponsorship of the POIS Forum. If you have any other questions or concerns about the grant award and its associated research project, please feel free to contact me at your convenience.
Kind regards,
Jason
---
Jason Barron
Research Administrator
Associate Director, Medical and Scientific Affairs
National Organization for Rare Disorders (NORD)
1779 Massachusetts Avenue NW, Suite 500
Washington, DC 20036
Email: jbarron@rarediseases.org
T (202) 588-5700 x109
F (202) 588-5701
M (203) 482-3398
This e-mail and any attachments may contain confidential and privileged material for the sole use of the intended recipient. Any review, use, distribution or disclosure by others is strictly prohibited. If you are not the intended recipient (or authorized to receive for the recipient), please delete the e-mail, along with any attachments, without copying or disclosing it and notify the sender by reply e-mail immediately. Thank you.
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Sweet! Thanks for sharing with us Demo!
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You're mighty welcome, Prancer.
WE'RE GETTING MUCH CLOSER TO A CURE THAN WE EVER HAVE DREAMED BEFORE!!
I tried university hospitals, and a private pharmaceutical manufacturer to research POIS since 2007. Even raised (pledged) $6,000 from forum members to start.
Nope.
Zero.
It took our great FORUM ADMINS/MEMBERS' A DIFFICULT, HUGE, CONCERTED TEAMWORK EFFORT with STEF and NORD to get this far.
Nothing to sneeze at!!!
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FROM STEF RE TRAVEL TO NEWARK!
Hi All,
The following organization will help provide free air fare to and from medical centers within the USA. They also have a long-distance ground transportation program (i.e. bus, train) They require you to fill out their financial form -- to show that you qualify for their free services -- but they do not make this process difficult.
It takes ~ three weeks for them to make arrangements, FYI.
They've been around for years and are a reliable, trustworthy non-profit organization --
National Patient Travel Center
4620 Haygood Rd, Suite 1
Virginia Beach, VA 23455
Homepage: http://www.patienttravel.org/
Email: info@nationalpatienttravelcenter.org
Phone: 1-800-550-1767
I hope this is helpful to those of you whose finances prevent your traveling to Newark, but are eligible for participation in the fMRi study.
Stef