Post Orgasmic Illness Syndrome (P.O.I.S.)

General Category => Discussion/Communication Research => Topic started by: Quantum on April 25, 2017, 04:05:41 PM

Title: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Quantum on April 25, 2017, 04:05:41 PM
Hi everyone, good news,

Stef just let us know that our new RFP by NORD for the upcoming new study is out !

Here is the direct link to the document:
 https://rarediseases.org/wp-content/uploads/2017/04/NORD_RFP2017_POIS.docx 


Here is the link to the page where it is listed with the other RFP by NORD for April 2017 :
 https://rarediseases.org/for-clinicians-and-researchers/research-opportunities/requests-proposals/


You are free and welcome to transmit this RFP to any MD or researcher or clinic you think would be appropriate and could be interested.


Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 26, 2017, 02:47:25 PM
This is NORD's Summary Description of our new Grant:



(http://i858.photobucket.com/albums/ab143/demografx/3E213CC6-53BD-475B-82A5-353CDE94B14C.jpg)
For more detail please see Quantum's opening post:  
his first link above.


Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 27, 2017, 06:41:39 PM
This went out by email to everyone (including medical researchers!) who subscribes to "POIS Google Alerts". Here's how you can subscribe, too:
http://www.basiccomputerinformation.ca/create-google-alert/



(http://i858.photobucket.com/albums/ab143/demografx/54D1491A-ECFD-4563-9F76-DD3308A6C82C.jpg)

"Full Coverage" link mentioned above:

http://www.prnewswire.com/news-releases/research-grants-available-for-rare-diseases-from-national-organization-for-rare-disorders-nord-300445649.html

Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: ThisType on April 27, 2017, 08:48:40 PM
That's great news!  Do you know if further donations will still go to this RFP or if they would be in reserve for a future RFP?
thanks!
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 28, 2017, 12:30:38 PM



That's great news! 



Do you know if further donations will

still go to this RFP or if they would be in reserve for a

future RFP?


thanks!


Future RFP.

Thanks, ThisType.

Good question!


Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 28, 2017, 07:20:34 PM




(http://i858.photobucket.com/albums/ab143/demografx/42570AEC-5462-4AF0-9E07-DE284860F1C4.png)
(http://i858.photobucket.com/albums/ab143/demografx/9D648C32-F6DF-4F86-81C5-50CE163AA063_1.jpg)






https://rarediseases.org/research-grants-rare-diseases-available-national-organization-rare-disorders/



Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 28, 2017, 10:42:09 PM


Stef just let us know that our new RFP by NORD for the upcoming new study is out !


Many thanks, Stef!


Best,
Demo



Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 29, 2017, 12:41:03 AM



(http://i858.photobucket.com/albums/ab143/demografx/2001-12/7D78A99F-16B0-417F-BD9C-6B903DE5C50A.png)



Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 29, 2017, 12:42:37 AM

Here is some additional *major*

media-outlet NORD Grant publicity,

which might further attract even

more superb and

qualitatively superior POIS

medical researchers!





(http://i858.photobucket.com/albums/ab143/demografx/737386CD-3F6B-45C7-82E6-313E6E9285D1.jpg)


(http://i858.photobucket.com/albums/ab143/demografx/6621079C-54C9-4091-9FB5-4A09B984A63F.jpg)









Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 29, 2017, 04:31:58 PM

(http://i858.photobucket.com/albums/ab143/demografx/3F4E1EE3-D58A-4CD7-A490-BEC5CCD7702A.png)

We're not alone!

(http://i858.photobucket.com/albums/ab143/demografx/6F50B65B-B4F9-42D1-AE1C-358DC1B6A5F1.png.jpeg)







(http://i858.photobucket.com/albums/ab143/demografx/2C01F71A-1A6A-474B-A9A9-59C20EBD5D48.jpg)





Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 29, 2017, 04:47:39 PM


Congratulations on our new NORD Grant

attainment -- to all of us POISers...



                 everywhere!



(http://i858.photobucket.com/albums/ab143/demografx/0AE7377F-EE53-48EC-B46F-8BD63F4BE5EB.jpg)
Forum Member Concentration Approximation. Map
developed and created by POISCenter's
AdminRareDisease "Mat780"




Best wishes to Us All!
Demo



Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 30, 2017, 06:09:25 AM
:) MAC FAQ :)

Q. Who evaluates all of the POIS Grant proposals for NORD (our Grant administrator) and who does the final award/selection of our Researcher/PI (Principal Investigator)? And who monitors/sends us periodic updates?

A. NORD's Scientific and Medical Advisory Committee (also known as "MAC") -- does all of the above.

The NORD MAC ( Medical Advisory Committee ) is comprised of physician/researchers who share their experience and expertise on behalf of patients and families affected by POIS. They are:

Marshall L. Summar, MD, Chair, NORD Strategic Advisory Committee
Division Chief, Genetics and Metabolism
Margaret O’Malley Chair of Molecular Genetics
Children’s National Medical Center
Professor, Pediatrics, George Washington
University School of Medicine and Health Sciences

Frederick Askari, MD, PhD
Associate Professor, Hepatology
Division of Gastroenterology
Director, Wilson Disease Program
University of Michigan Health System

Matthias Baumgartner, Prof DrMed
Associate Professor for Metabolic Diseases
University of Zurich
Head, Division of Metabolics
Children’s Hospital Zurich

Garrett E. Bergman, MD
Senior Director, Medical Affairs
Kedrion USA

Preston W. Campbell, III, MD
Executive Vice President for Medical Affairs
Cystic Fibrosis Foundation
Associate Professor of Pediatrics
Johns Hopkins Cystic Fibrosis Center

Robert M. Campbell, Jr., MD
Division of Orthopaedics
Director, Center for Thoracic Insufficiency
Syndrome
Children’s Hospital of Philadelphia

Harry (Hal) Dietz, MD
Victor A. McKusick Professor of Genetics
and Medicine
Investigator, Howard Hughes Medical Institute
Johns Hopkins University School of Medicine
McKusick-Nathans Institute of Genetic Medicine

Gregory M. Enns, MD
Associate Professor of Pediatrics (Genetics)
Lucile Packard Children’s Hospital
Associate Professor – Med Center Line,
Pediatrics – Medical Genetics
Member, Child Health Research Institute
Stanford University School of Medicine

Marlene Haffner, MD, MPH
President and CEO
Haffner Associates, LLC

James E. Heubi, MD
Director, Clinical Translational Research Center
Co-Director, Center for Clinical and
Translational Science and Training
Associate Dean, Clinical and Translational
Research
Professor, Department of Pediatrics
Cincinnati Children’s Hospital Medical Center

James F. Leckman, MD
Neison Harris Professor of Child Psychiatry
Psychiatry, Psychology and Pediatrics
Yale Child Study Center
Yale School of Medicine

Brendan Lee, MD, PhD
Robert and Janice McNair Endowed Chair in
Molecular and Human Genetics
Professor of Molecular and Human Genetics
Baylor College of Medicine
Investigator, Howard Hughes Medical Institute

James E. Lock, MD
Cardiologist-in-Chief
Boston Children’s Hospital
Alexander S. Nadas Professor of Pediatrics
Harvard Medical School

Mary Jean Sawey, PhD
Senior Vice President, Medical Director
ICC LOWE Inc.

Susan Winter, MD
Medical Director, Genetics and Metabolism
Children’s Hospital Central California

Doris T. Zallen, PhD
Professor of Science and Technology
Studies and Humanities
Virginia Tech University
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on May 01, 2017, 12:55:40 PM
Everyone: post freely here (and at other threads).

The more we post about our Grant, the more it gets picked up and transmitted by Google's search engines.

Google search result/Listing Example (just today):
(http://i858.photobucket.com/albums/ab143/demografx/065D6C61-3809-4848-B088-619E0B7F1806.jpg)
It's picked up from the 3rd & 4th paragraph down below.


And this will thus hopefully get into the hands of..."the perfect Dr. POIS". Who in turn will possibly submit a Researcher
(PI -- or -- Principal Investigator) application for the POIS Grant!
 
Let's let the  w o r l d  know that we wish to conquer this ugly, horrible syndrome that we all have.

Let's help NORD find the perfect "Dr. POIS".

On a budget.

We're good at that.

I'm not asking you all to do anything new! You've already done a GREAT job in building this POISCenter Powerhouse. And gone through a lot of pain to get to this place in our "career".

So...just keep up the good work :)


Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on May 02, 2017, 01:52:41 AM
Re-posted today with *new* how-to-subscribe information

This went out by email to everyone (including medical researchers!) who

subscribes to "POIS Google Alerts". Here's how you can

subscribe, too:


http://www.basiccomputerinformation.ca/create-google-alert/
(http://i858.photobucket.com/albums/ab143/demografx/54D1491A-ECFD-4563-9F76-DD3308A6C82C.jpg)
"Full Coverage" link mentioned above:
http://www.prnewswire.com/news-releases/research-grants-available-for-rare-diseases-from-national-organization-for-rare-disorders-nord-300445649.html

Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on May 02, 2017, 11:16:19 AM
Congratulations on our new NORD Grant attainment -- to all of us POISers everywhere!
(http://i858.photobucket.com/albums/ab143/demografx/0AE7377F-EE53-48EC-B46F-8BD63F4BE5EB.jpg) FROM PREVIOUS PAGE: Forum Member Concentration Approximation. Map developed and created by POISCenter's AdminRareDisease "Mat780"  Best wishes to Us All! Demo
-------------------------------------------------------------------------------------------

(http://i858.photobucket.com/albums/ab143/demografx/00699930-437B-441B-A086-36FA4AC4D708.jpg)

I didn't want our •ASIAN...and •Australia/New Zealand-area (the latter from where our POIS TV documentary originated) great POISer friends to feel left out of this Approximation Chart also developed by "Mat780" :)

Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on May 02, 2017, 03:22:20 PM
Thanks, everyone, for sending me your supportive (or otherwise constructively-critical)
PM'S (Private Messages) about our new research study.

I am happy to continue being your loyal advocate at NORD. And with our final PI choice.
Best
Demo



Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on May 04, 2017, 10:34:53 PM
The info from Quantum's excellent opening post has been posted at The Naked Scientists' POIS  thread under my name.

It's Plagiarism 101 @ its finest!

https://www.thenakedscientists.com/forum/index.php?topic=6576.new#new




Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on May 06, 2017, 01:16:07 AM



Re: Future Grants/RFP's


Cross-posted from another, older thread


Is there right now a way to donate money for the research ?


On Sep 28, 2016, at 8:26 AM: from NORD:

Hello Demo,

It would be wonderful if we could fund another POIS research grant!  There is a $35,000 minimum for issuing a grant ($30,000 for the grant award, plus a $5,000 administrative fee).

Donations can be made to NORD's POIS research fund by navigating to https://salsa3.salsalabs.com/o/51076/donate_page/research-program and selecting POIS from the research fund drop-down menu.

Please let us know if you have any additional questions!

And from prior page post...


That's great news! 

Do you know if further donations will

still go to this RFP or if they would be in reserve for a

future RFP?


thanks!


Future RFP.

Thanks, ThisType.

Good question!


Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on May 15, 2017, 06:27:38 PM
Cross-posted

(http://i858.photobucket.com/albums/ab143/demografx/ED9A3A1E-58CA-45BB-BA04-BC65AD44CBDF.jpg)

A new $14million fund FOR (future) POIS - and other rare disorders - MEDS/PHARMACEUTICALS/TREATMENTS!

https://globalgenes.org/raredaily/fda-sets-up-new-rare-disease-research-fund/
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on June 16, 2017, 04:42:32 PM
Just to help adjust expectations...researchers can submit POIS Grant proposals until 11:59 pm ET on June 23, so NORD will not have the application numbers before the end of the business day.

According to the current timeline, the final PI (Primary Investigator) selection for POISCenter -- by NORD -- will be made in December 2017.


Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: certainlypois2 on June 17, 2017, 04:24:08 PM
do we know how many have submitted as of now
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on June 17, 2017, 05:58:34 PM
Hi, CP2, no they won't say till the 24th or so.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: FloppyBanana on June 24, 2017, 03:16:20 AM
Cross-posted

(http://i858.photobucket.com/albums/ab143/demografx/ED9A3A1E-58CA-45BB-BA04-BC65AD44CBDF.jpg)

A new $14million fund FOR (future) POIS - and other rare disorders - MEDS/PHARMACEUTICALS/TREATMENTS!

https://globalgenes.org/raredaily/fda-sets-up-new-rare-disease-research-fund/

Hi there it's been a while since I have been on here. Has anyone linked in with this organisation?
Thanks FB
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Habibou on September 17, 2017, 08:09:50 AM
Do we have any news regarding a possible research for our condition?
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: MirkoThiel0 on November 03, 2017, 10:39:50 AM
same question then the one above me :)
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Quantum on November 04, 2017, 01:31:30 PM
Hi Mirko,

For the most recent news about POIS research, bookmark that board: http://poiscenter.com/forums/index.php?board=22.0

Currently, first post on the board will tell you about latest news, that is, our new RFP is up on NORD'S website, and has no deadline, so will stay active till our $31000 grant will be awarded to a research team for a new POIS study.

Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on November 05, 2017, 02:04:57 AM
Thanks, Quantum!
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: MirkoThiel0 on November 05, 2017, 06:02:19 AM
Hi Mirko,

For the most recent news about POIS research, bookmark that board: http://poiscenter.com/forums/index.php?board=22.0

Currently, first post on the board will tell you about latest news, that is, our new RFP is up on NORD'S website, and has no deadline, so will stay active till our $31000 grant will be awarded to a research team for a new POIS study.


Thank you Quantum.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on February 08, 2018, 10:37:17 AM
POTENTIAL POIS RESEARCHERS/SCIENTISTS RECEIVED THIS EMAIL TODAY - -
Demo

emphasis mine -

NORD Research Grants

*NORD has reopened the call to submit abstracts and letters of intent for the following grants. The deadline is ongoing and all U.S. and international researchers interested in studying these diseases are encouraged to consider applying. For questions related to these grants, email research@rarediseases.org.*

Cat Eye Syndrome – One (1) grant of up to $30,000 for scientific and/or clinical research studies related to Cat Eye Syndrome. Download RFP.

Malonic Aciduria – One (1) grant of up to $50,000 for scientific and/or clinical research studies related to Malonic Aciduria. Download RFP.


Post-Orgasmic Illness Syndrome – One (1) grant of up to $31,000 for scientific and/or clinical research studies related to Post-Orgasmic Illness Syndrome (POIS). Download RFP.
https://rarediseases.org/wp-content/uploads/2014/11/NORD_RFP_POIS.docx


Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on February 08, 2018, 10:43:45 AM
Everyone: please feel free to send the above to any doctor or organization you feel is qualified. That is how we found our last researcher: WE made the initial contact.

I believe that our chances are improved greatly when the researcher knows who we (POISCenter) are *in advance* of their submitting a proposal to NORD.

Best,
Demo
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on February 08, 2018, 11:58:04 AM

Applications will be accepted on a rolling basis until the funding has been awarded.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on February 26, 2018, 10:17:43 AM
IMPORTANT: Finding our POIS Researcher

As you all know,  the NORD award to a POIS research team (up to $31,000 that POISCenter Members donated) has been sluggishly delayed.

Looking back at our historical success in finding someone to research POIS, I believe that our last research project was influenced by our *early* (pre-award) discussions with Dr K.

I think we all played a role in Dr K’s decision to take us on. He was responding to NORD because he *already* knew us and POIS matched his research goals.

So...I think that a PERSONAL MEMBER effort between POISCenter & researchers is invaluable, perhaps even indispensable in our early careers here to annihilate the still misunderstood POIS.

In conclusion, NORD says “it would be wonderful to have [POISCenter] forum members share the RFP information with their doctors and other relevant contacts.”

============================================================
Therefore...*please* send this link below to a doctor you trust and/or to a researcher you can contact who you think would be a good candidate to study POIS:

RFP: (NORD’s Request for Proposal)

https://rarediseases.org/wp-content/uploads/2014/11/NORD_RFP_POIS.docx

Many thanks and best wishes to us all!
demo





Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on February 28, 2018, 12:22:30 AM
One example (mine) of how we can distribute the NORD Request for Proposal:


On Feb 27, 2018, at 2:13 PM, demografx wrote:

Dear Dr G, [my own large-city university-endocrinologist]

I hope you’re well.

I continue to benefit greatly from your treatment plan that I implemented with you about 8 years ago.

Perhaps you can help us with furthering the research on Post-Orgasmic Illness Syndrome?

I’ve attached a $31,000 grant description which I would hope you can pass along to your colleagues.

Best wishes,

demografx
https://rarediseases.org/wp-content/uploads/2014/11/NORD_RFP_POIS.docx

Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on February 28, 2018, 09:10:45 PM

Observer made an excellent suggestion:

Dr Goldmeier in London.

I think 1-2 forum members visited him.


Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: POISse on March 02, 2018, 09:00:15 PM
I visited Dr Goldmeier last week. He knows about pois, he has seen some other pois sufferer and he is aware of the current research (he mentioned Dr W, Dr K and the Chinese study). Nevertheless he felt a bit helpless and he suggested that I see an immunologist.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on March 03, 2018, 08:17:33 PM
Thank you, POISse!
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on March 07, 2018, 03:00:48 PM
Hi everyone.

Any thoughts about sending out an email to your doc and/or researcher to expedite finding our next POIS consultant?
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: mellivora on March 08, 2018, 03:33:24 PM
Likewise I have visited Dr Goldmeier some years ago. Very nice chap. We tried a couple of things but in the end he was at a bit of a loss how to move forward I'm afraid.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on March 08, 2018, 06:02:20 PM
mellivora, thanks for sharing that!
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Meshal on March 20, 2018, 11:01:05 AM
I'm not sure but from what I understand is that so far members here have donated 31,000$, btw huge appreciation for you guys for doing this, I just found out really haha, I can't express my gratitude. as soon as I manage my POIS I'll be able to collect my money since It's easy to gather dirty money In my country :P 
 
and RFP means that NORD is looking for a research team of a doctor to research about POIS using the 31,000$ the members have donated. Is that correct?

I already prepared a an email to a lot of doctors in my country based on my though above. am I making sense?
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 08, 2018, 10:43:45 AM

...RFP means that NORD is looking for a research team of a doctor to research about POIS using the $31,000 the members have donated. Is that correct?


Yes!
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 08, 2018, 10:45:54 AM

I already prepared an email to a lot of doctors in my

country based on my thoughts above. Am I making

sense?


Yes!

Thank you very much, Meshal!!
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 08, 2018, 10:52:18 AM

...members here have donated $31,000, btw huge appreciation for you guys...I can't express my gratitude.


Thank you, Meshal, I feel the exactly same way! Huge appreciation for all you POISCenter Forum contributors! (Including me :) )
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 08, 2018, 01:16:58 PM


I already prepared an email to a lot of doctors in my

country based on my thoughts above. Am I making

sense?


Yes!

Thank you very much, Meshal!!
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 08, 2018, 01:17:56 PM



Observer made an excellent suggestion:

Dr Goldmeier in London.

I think 1-2 forum members here visited him in London.

To all: feel free to use this email as a “template” to send to your own doctor or researcher

Subject: $31,000 Grant to study POIS

On Feb 28, 2018, at 6:41 PM, demo wrote:

Dear Dr Goldmeier,

I hope you’re well. I have been moderating POIS forums for 10 years.

You and I chatted briefly via email, then I think one or two of our members visited with you at your office.

Perhaps you can help us with furthering the research on Post-Orgasmic Illness Syndrome?

I’ve attached a $31,000 grant description which I would hope you can review and/or pass along to your colleagues.
https://rarediseases.org/wp-content/uploads/2014/11/NORD_RFP_POIS.docx

Best wishes,

Demografx
Administrator
POISCenter.com

ps - please visit our forum!

http://www.poiscenter.com/forums/index.php
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Habibou on April 16, 2018, 03:44:13 PM
Hi, I have an appointment with De Goldmeier the 26th of April so I could let you know what's going on with his thoughts
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Quantum on April 16, 2018, 05:01:02 PM
Thanks Habibou,  looking forward to hear from you :)
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 19, 2018, 06:07:10 AM
Following is a private message posted here with fernab’s permission.


I am searching a good Dr in my country. But not very Lucky for the moment. Saw there is a RFP doc. If I finally find one Who is good enough and interested in investigating. Will let you know.


Hi, fernab!

Thank you for your interest in helping to distribute our RFP!

Best regards,
Demo

cc: POISCenter Admin Team

UPDATE: Forum Member fernab emailed our RFP to an immunologist who showed interest!


Any forum member can send this RFP out to researchers:
https://rarediseases.org/wp-content/uploads/2014/11/NORD_RFP_POIS.docx


Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 24, 2018, 10:59:28 AM

Today  NORD will be sending out another reminder about their current grant opportunities. They will be suggesting that interested researchers submit their application materials to NORD by May 7 in order to ensure that they are considered for the funding.  After May 7, NORD will evaluate the RFP response to determine if the call should remain open.

Priority will be given to proposals submitted by May 7
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: fernab on April 24, 2018, 12:22:55 PM
I visited today an important urologist in my country. And also told him about the NORD RFP. He told me he knows NORD. But unfortunatelly, he also told me he is very occupied to do anything right now. He also knows a few things about POIS. He told me to try a drug to force retrograd ejaculations. That means, seminal liquid don't gets out directlly through the urethra but internally through the bladder. He wants me to test if this way I don't develop the POIS symtoms.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Quantum on April 24, 2018, 01:06:25 PM
I visited today an important urologist in my country. And also told him about the NORD RFP. He told me he knows NORD. But unfortunatelly, he also told me he is very occupied to do anything right now. He also knows a few things about POIS. He told me to try a drug to force retrograd ejaculations. That means, seminal liquid don't gets out directlly through the urethra but internally through the bladder. He wants me to test if this way I don't develop the POIS symtoms.

Hi Fernhab.  He must have prescribed you an alpha-1 blocker such as Flomas/tamsulosin.  I would be interested to know what results you get with this, if you try it.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: fernab on April 24, 2018, 03:02:53 PM
Hi Quantum,

I think you are right. It's a alfa-1A blocker called silodosine. Alfa-1A adrenergic Receptors blocker. According to the drug description. Tomorrow will talk about it to my family doctor.

Will let you know if I finally try It.

Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 26, 2018, 11:35:03 AM

Today  NORD will be sending out another reminder about their current grant opportunities. They will be suggesting that interested researchers submit their application materials to NORD by May 7 in order to ensure that they are considered for the funding.  After May 7, NORD will evaluate the RFP response to determine if the call should remain open.

Priority will be given to proposals submitted by May 7

Here is the link to NORD’s email about the reminder:
https://conta.cc/2K7jLlr
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: fernab on April 26, 2018, 11:50:19 AM
Hi demo,

When you say ' After May 7, NORD will evaluate the RFP response to determine if the call should remain open.  '

Means there is still no proposal? Has not yet any arrived?? Do you have any info about that?
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 26, 2018, 02:50:54 PM
Hi demo,

When you say ' After May 7, NORD will evaluate the RFP response to determine if the call should remain open.  '

Means there is still no proposal? Has not yet any arrived?? Do you have any info about that?

No proposals yet :(
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: fernab on April 26, 2018, 04:08:48 PM
I told my inmunologist that may 7 could be a deadline date for applying for this fund.

He told me he would also tell to a good friend he has in an important hospital in NY.

Thinking a little about this, what should be necessary to make It interesting for a researcher?

It's a question of the number of people suffering this awful sindrom. It is not a big enough number?

If it was because of that. Can we do something to help this number becomes higher? If doctors knew better this illness maybe the number of people would be higher? If we think about it. Maybe yes.

Just because doctors would be able to detect more sufferers than they are able to detect right now. How many sufferers could be out there suffering POIS without knowing it? Doctors play an important role to make this number bigger.

And for this reason I try to spread the word about POIS to every doctor I visit. And letting him know about the NORD RFP as well.

I think we all can do something to change a bit this situation. It is somehow also our responsability.

What do you think about this?
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: certainlypois2 on April 26, 2018, 04:27:03 PM
would it be okay to just send messages to random local doctor.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: mike_sweden on April 27, 2018, 12:58:26 AM
where is the updated document?
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: fernab on April 27, 2018, 02:37:09 AM
Just a little above un this thread we have this:

To all: feel free to use this email as a “template” to send to your own doctor or researcher

Subject: $31,000 Grant to study POIS

On Feb 28, 2018, at 6:41 PM, demo wrote:

Dear Dr Goldmeier,

I hope you’re well. I have been moderating POIS forums for 10 years.

You and I chatted briefly via email, then I think one or two of our members visited with you at your office.

Perhaps you can help us with furthering the research on Post-Orgasmic Illness Syndrome?

I’ve attached a $31,000 grant description which I would hope you can review and/or pass along to your colleagues.
https://rarediseases.org/wp-content/uploads/2014/11/NORD_RFP_POIS.docx

Best wishes,

Demografx
Administrator
POISCenter.com

ps - please visit our forum!

http://www.poiscenter.com/forums/index.php
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: fernab on April 27, 2018, 02:45:04 AM
would it be okay to just send messages to random local doctor.

Of course this is something we can do.
But, if you visit a doctor you can also take advantage and comment on it. Maybe the message is somehow stronger if he sees a real sufferer. But if course, everyone is completelly free of doing the way he feels better.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: fernab on April 27, 2018, 06:12:21 AM
Hi,

I have recently contacted a medicine university in my country, were showed me interest in the NORD fund for researching on POIS. I sended them the RFP as well as the recent reminder about the May 7.

Maybe Medicine Universities is a good place to distribute the RFP.

fernab.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 27, 2018, 07:58:33 AM
Hi,

I have recently contacted a medicine university in my country, were showed me interest in the NORD fund for researching on POIS. I sended them the RFP as well as the recent reminder about the May 7.

Maybe Medicine Universities is a good place to distribute the RFP.

fernab.


Thank you, fernab, for posting about this.

It is very important.

For all of us.

We crowd-funded amongst ourselves (POISCenter members!): $31,000++ for this project.

Amazing!

So let’s finally get ourselves cured! We can’t do it alone, without competent, POIS-dedicated medical research!

Thanks for letting me whine ;D


ps - send out the RFP! Make our money do MORE!
https://rarediseases.org/wp-content/uploads/2014/11/NORD_RFP_POIS.docx

Or this shorter link/url:
https://tinyurl.com/y96dnkmq

THANK YOU, EVERYONE
demo



Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 27, 2018, 03:30:29 PM
where is the updated document?

Here, mike_sweden:
https://rarediseases.org/wp-content/uploads/2014/11/NORD_RFP_POIS.docx

Or this shorter link/url:
https://tinyurl.com/y96dnkmq
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 27, 2018, 03:31:49 PM
would it be okay to just send messages to random local doctor.


Yes!

Thank you, certainlypois2!


Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 27, 2018, 03:55:38 PM

I think we all can do something to change a bit this
[sluggish POIS researcher recruitment] situation.

It is somehow also our responsibility.

What do you think about this?


Yes it is!!!
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 27, 2018, 03:57:44 PM
My personal experience is that a researcher can be found successfully by hearing directly from...a POIS sufferer!

Not just from NORD.


Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 27, 2018, 06:36:57 PM
I sent this today to my GP (who is influential. He was the Chief Medical Officer at the US Olympics Games)

Dear Dr G,

I hope you’re well.

I continue to benefit greatly from your treatment plan that I implemented with you about 8 years ago.

Perhaps you can help me with furthering the research on Post-Orgasmic Illness Syndrome?

I’ve attached a $31,000 grant description which I would hope you can pass along to your colleagues.

Any feedback from you, Dr G, to help this along would be GREATLY appreciated!

Best wishes,

[demo]
https://rarediseases.org/wp-content/uploads/2014/11/NORD_RFP_POIS.docx



Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 28, 2018, 01:45:42 AM


Maybe Medical Universities are a good place to distribute the RFP.


Yes!

Excellent suggestion!


Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on October 26, 2018, 06:26:47 PM

IMPORTANT ANNOUNCEMENT


I just checked in with NORD - we're still on track! 


NORD's MAC (Scientific & Medical Advisory Committee) 

https://tinyurl.com/y86fwt4t

is now reviewing the full POIS study proposals from

Research Teams and they hope to announce our $31,000

POIS Research Grant awardee by the end of the year!



Thank you again, magnificent POIS donor$!


Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: certainlypois2 on October 27, 2018, 02:49:44 PM
Nice news
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: fernab on October 27, 2018, 03:07:59 PM
Yes, very good!

I was recently trying to contact a researcher I have been un contact with before summer. But, unfortunately, I could not contact him again. Neither by phone nor by email.

Very busy? Lack of interest? ... I do not know with certainty which of the two is the problem ... but at least I tryed everything I could.... Again, reading this is very good news. We need it very much!
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on October 27, 2018, 07:55:51 PM
Thank you, certainlypois2 and fernab!
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on December 04, 2018, 09:05:15 PM
I visited today an important urologist in my country. And also told him about the NORD RFP. He told me he knows NORD. But unfortunatelly, he also told me he is very occupied to do anything right now. He also knows a few things about POIS. He told me to try a drug to force retrograd ejaculations. That means, seminal liquid don't gets out directlly through the urethra but internally through the bladder. He wants me to test if this way I don't develop the POIS symtoms.

Hi Fernhab.  He must have prescribed you an alpha-1 blocker such as Flomas/tamsulosin.  I would be interested to know what results you get with this, if you try it.

I tried it manually, with a technique promulgated by Mantak Chia.

It didn’t work. My POIS was as bad as ever.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on December 13, 2018, 11:58:39 AM
NORD POIS Research Grant news:

NORD is still planning to have the final POIS Research Grant awardee decision by the end of the month, but it is of course possible that the timeline will shift into January. 

We are close!

Best wishes for the Holidays, everyone!
Demo



Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on December 18, 2018, 06:10:03 PM

Just received

“Congratulations to all of us

from NORD

for reaching 750+ Members!!”


Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Defsync on December 21, 2018, 11:28:55 AM
Ye know, the way this group has been conducting itself, doing its own research collection, questioning EVERYTHING, going out and sifting through tens of thousands of online docs and research, got me thinking the other day after I watched the Gary Cooper film on lou gehrig (the father of ALS). After poking around some reddit threads on MS and ALS, it struck me that, there are hundreds of thousands out there who desperately want answers, but no one is organizing those people to do what WE have been doing here.

Wouldnt it be an interesting thing, if we were to do maybe a PSA video, not specifically on POIS, but a video on how people struck with rare diseases, can organize and conduct research themselves in order to assist the actual organizations conducting medical research? How to get NORD grants?

We have learned that medical society suffers from the same faults and misgivings and falsehoods as any societal organization by virtue of "humans err", and that NOTHING can be assumed when one is seeking answers to their own rare medical conditions.

So the idea is, we create a PSA video on youtube, instructing how people with rare diseases can come together, by creating their OWN forums, their OWN surveys, how to correspond with actual medical colleges and researches, and by doing such a video at the end when people ask well shit where did you guys learn to get so good at doing this, we tell them a little bit about POIS and who we are. By helping other groups of rare diseases learn how to effectively help their own cause in finding a cure for theirs, it could help point people to want to help us spread the word as well. And would be less icky than a video just talking bout how O's make u crazy and painful =P

Oh and hi and merry xmas and all that. ;P

Oh yeah and to those who want a social hobby thats forgiving of people who might suffer from POIS, I would suggest boardgaming =) I've cofounded a local boardgaming club, the only one of its kind in this area strictly for tabletop gaming (and not trying to sell you something, like a gaming store), and we have our own clubhouse in a fancy part of town and been pretty successful at funding it as a non-profit. =)
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Nas on December 21, 2018, 01:55:23 PM
Ye know, the way this group has been conducting itself, doing its own research collection, questioning EVERYTHING, going out and sifting through tens of thousands of online docs and research, got me thinking the other day after I watched the Gary Cooper film on lou gehrig (the father of ALS). After poking around some reddit threads on MS and ALS, it struck me that, there are hundreds of thousands out there who desperately want answers, but no one is organizing those people to do what WE have been doing here.


On one side we are completely lucky that we live in the age of Internet, wherein unlimited information is available with a click of a button. We did so much testing and theorizing I feel like we almost solved the mystery of POIS. Yet few of us found any relief method. I'm still stuck living in limbo where I don't know what will be my future and how I would construct relation ships with other people. I was hoping that soon enough at least I would find a remedy, but evidently I haven't, I've tried every goddemn thing that had been mentioned in this forum, yet, no relief...   
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: certainlypois2 on December 23, 2018, 03:03:20 PM
Nice to see you back  defsync
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on December 23, 2018, 03:55:58 PM

Nice to see you back  Defsync



Yes, ditto!

As Defsync mentioned, he posted in 2007! And b_jim! If I

missed anyone, please remind me!


Demo


(https://www.deltageeks.net/wp-content/uploads/2017/02/12-years-anniversary.jpg)


Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Defsync on December 24, 2018, 01:25:53 PM

Nice to see you back  Defsync



Yes, ditto!

As Defsync mentioned, he posted in 2007! And b_jim! If I

missed anyone, please remind me!


Demo


(https://www.deltageeks.net/wp-content/uploads/2017/02/12-years-anniversary.jpg)


aw thanks! =) So, you guys are preparing to get another NORD grant, and of course Im going to give my unsolicited advice.

I would let them know the issues you had with the last one, 1) they stalled for a year and a half because they the idea of men masturbating for research made them feel icky (haha but seriously you know what i mean) 2) they put the kabosh on it because of a complaint, ignoring the fact that this condition can SEVERLY IMPACT A PERSONS COGNITION AND CAUSE MINOR DEMENTIA, so there needs to be an undersatnding in place that ensures the reasearch completes and that "complaints" are handled keeping in mind the one with the complaint might not be in the right mind when making it (I have no specifics on the complaints made against rutgers, this isnt a statement that i know what that was about, im just suggesting this because it makes a ton of sense.)

3) MY situation has changed somewhat. I am able to travel away from home for a week at a time if necessary. In other words, I am willing to submit myself for research, and let em pick my brain. It would also give me the opportunity to introduce to the research the idea of doing rigorous cognition tests before and after, because no offense, the cognition loss is the shit that wrecks MY life, and im sure others as well, so I would like to have actual labrotory proof of it. <--- now keep in mind, if we prove that, at least I believe, that would get a LOT more people to pay attention to us and could possibly help us with way more research money. Keep in mind that if proven, in a condition thats not tested for at all, it could put the entire sexual psychology industry on its knees, now that theres a new element that could be affecting people that no one was aware of. just saying. It would become a huge news item, I believe. Could open up the door in funding like never before.

So yeah, however, as Im sure some remember, Im a bit of a loose cannon, so if I go, I hope someone like quantum or demo goes as well, as you really dont want me to be the "face" of this, Im just good at being a grunt and getting the mission accomplished in the best way possible with good ideas.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Muon on December 24, 2018, 01:48:40 PM
...ignoring the fact that this condition can SEVERLY IMPACT A PERSONS COGNITION AND CAUSE MINOR DEMENTIA...

Perhaps my comment is a bit off-topic but the dementia part scares me sometimes especially since my brother has tested positive for BDNF, where low BDNF levels are associated with Parkinson and Alzheimer disease aside from depression and stress. I can't remember who told me this but there were a few older POIS patients who developed Parkinson's in their 40's.Click here (https://www.dropbox.com/sh/2af7202xa3gqpiw/AACrvZK9pbVvp0kUXOAO1NCba?dl=0&preview=Bro+1-5+BDNF%2BCD57%2BGRactivity%2BLP_PLA2%2BCOMT(GENTEST).pdf)
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Nas on December 24, 2018, 06:16:58 PM
...ignoring the fact that this condition can SEVERLY IMPACT A PERSONS COGNITION AND CAUSE MINOR DEMENTIA...

Perhaps my comment is a bit off-topic but the dementia part scares me sometimes especially since my brother has tested positive for BDNF, where low BDNF levels are associated with Parkinson and Alzheimer disease aside from depression and stress. I can't remember who told me this but there were a few older POIS patients who developed Parkinson's in their 40's.Click here (https://www.dropbox.com/sh/2af7202xa3gqpiw/AACrvZK9pbVvp0kUXOAO1NCba?dl=0&preview=Bro+1-5+BDNF%2BCD57%2BGRactivity%2BLP_PLA2%2BCOMT(GENTEST).pdf)
I can't believe I'm saying it, but, should we start taking Alzheimer medications? I mean, nothing for me worked to fix my cognitive ability. I might as well try to preserve what is left of it.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Defsync on January 03, 2019, 02:59:09 AM
...ignoring the fact that this condition can SEVERLY IMPACT A PERSONS COGNITION AND CAUSE MINOR DEMENTIA...

Perhaps my comment is a bit off-topic but the dementia part scares me sometimes especially since my brother has tested positive for BDNF, where low BDNF levels are associated with Parkinson and Alzheimer disease aside from depression and stress. I can't remember who told me this but there were a few older POIS patients who developed Parkinson's in their 40's.Click here (https://www.dropbox.com/sh/2af7202xa3gqpiw/AACrvZK9pbVvp0kUXOAO1NCba?dl=0&preview=Bro+1-5+BDNF%2BCD57%2BGRactivity%2BLP_PLA2%2BCOMT(GENTEST).pdf)
I can't believe I'm saying it, but, should we start taking Alzheimer medications? I mean, nothing for me worked to fix my cognitive ability. I might as well try to preserve what is left of it.

Lord no. I have. Out of everything I've ever tried, alzheimers scripts nearly killed me. You dont want details. Acetylcholinesterase inhibitors are no joke man, and have to be carefully titrated up over long periods of time before they become effective.

On the topic of NORD grants, I feel like as a group we should look at multiple universities and researchers, and have round robin discussions on who might be the best for a grant. Getting chummy with one researcher then deciding hey you know what, lets give em a shot is probably not the best method for choosing people who are going to take POIS research 110% seriously. I also think doctors in sexual medicine shouldnt be considered, and instead the focus should be on neurologists, like the one who did the study about dementia in men post vasectomy. Doctors who have an inclination into POIS-like interactions, but whose main discipline is neurology.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on January 04, 2019, 01:15:51 AM

I also think doctors in sexual medicine shouldn’t be considered...


Why not?


Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on January 26, 2019, 01:55:45 PM
NORD just informed me that the POIS search results on NORD's website now include data from NIH's (National Institutes of Health) GARD (Genetic and Rare Diseases Information Center).


https://rarediseases.org/?s=pois&submit=


https://rarediseases.org/gard-rare-disease/10809/postorgasmic-illness-syndrome/


Thanks to POISCenter members, including Stef, who helped put this together starting a few years ago!
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on January 31, 2019, 11:12:52 AM
We are lucky if this research uncovers a tiny part of the mechanism of POIS
Thank you for expressing a realistic expectation!

Please also keep in mind that NORD considers this current research to be a  “baby step” with “seed money” that we ourselves raised at POISCenter. The ultimate goal is to attract BIG players, like the National Institutes of Health, with 6-and-7-figure Grants (funding: $32 Billion/year) to explore POIS in the company of research on major illnesses, such as cancer.

This rarely happens as a first step.

So we are on a journey to prove ourselves as being worthy of major research *after* a first study is reputably published and will hopefully garner major medical attention.

Quantum’s recent announcement of our now having attained 750+ registered POISers at the forum made a very good impression at NORD. We look serious!

Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: fernab on January 31, 2019, 11:27:58 AM
Those are good news!
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on January 31, 2019, 11:35:23 AM
Yes! Thank you, fernab!
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on February 01, 2019, 10:03:04 AM

Our POIS Research Team & Project

https://rarediseases.org/for-clinicians-and-researchers/research-opportunities/research-grant-recipients/

From NORD:

Dear Demo,

We are very pleased to tell you that NORD's Medical Advisory Committee has selected the following POIS research project for funding:

Principal Investigator:Tierney Lorenz, PhD

Institution: University of Nebraska-Lincoln

Project Title: Autonomic, endocrine, and immune mediators of Post-Orgasmic Illness Syndrome

Congratulations!  We recognize that this has been a long journey for the POIS community and are so excited that this grant funding will be used to support Dr. Lorenz and her team in advancing the field of POIS research.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Nas on February 01, 2019, 11:12:59 AM


Project Title:                                    Autonomic, endocrine, and immune mediators of Post-Orgasmic Illness Syndrome


Exactly what we need!
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on February 01, 2019, 11:14:46 AM
Thanks, Nas!!
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Quantum on February 01, 2019, 02:06:07 PM

We now have a new POIS Research Team!!

https://rarediseases.org/for-clinicians-and-researchers/research-opportunities/research-grant-recipients/

From NORD:

Dear Demo,

We are very pleased to tell you that NORD's Medical Advisory Committee has selected the following POIS research project for funding:

Principal Investigator:Tierney Lorenz, PhD

Institution: University of Nebraska-Lincoln

Project Title: Autonomic, endocrine, and immune mediators of Post-Orgasmic Illness Syndrome

Congratulations!  We recognize that this has been a long journey for the POIS community and are so excited that this grant funding will be used to support Dr. Lorenz and her team in advancing the field of POIS research.


Great !   We now have a POIS study that will soon enter the preparation phase :)

Thanks everyone for your patience !

The title is very interesting, I hope we will have more details soon :)

But just the title indicates that the study will probe at least 3 possible causes of POIS:   nervous system/autonomic , hormones ( endocrine), and auto-immune aspects.  Sounds great !   

Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on February 01, 2019, 02:22:31 PM

Thank you, Quantum!


Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: fernab on February 01, 2019, 02:27:45 PM
Totally agree with Quantum. Sounds really great!!
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on February 01, 2019, 02:31:14 PM
Thanks, fernab!!
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on February 01, 2019, 03:17:09 PM
Many, many thanks again to everyone here who

contributed your hard-earned fund$ to this new POIS

Study!

Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on February 01, 2019, 03:24:16 PM


Our POIS Research Team


(http://cb3.unl.edu/wp-content/uploads/2018/08/Lorenz_cropped.jpg)

Dr. Tierney Lorenz, our Primary Investigator

(https://liberoscenter.com/wp-content/uploads/2015/04/DSC_1260.jpg)

Dr. Nicole Prause, our Co-Investigator




The POIS data will be collected at Dr. Prause’s lab (Liberos LLC) in Los Angeles, but both Dr. Lorenz and Dr. Prause will be analyzing it.
www.liberoscenter.com

Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Quantum on February 01, 2019, 10:08:35 PM
Thanks for the info, Demo !
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on February 01, 2019, 10:09:47 PM
My pleasure, Quantum!


Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Quantum on February 01, 2019, 10:13:40 PM
Some more info on the primary investigator fo the "poiscenter-funded POIS study" :

https://psychology.unl.edu/tierney-lorenz

The Research interest paragraph shows she has interesting background to investigate the cause of POIS, having studied the link between immunity, hormones, nerouvs system , psychological profile, etc.... and sexual health :

"Dr. Lorenz's research examines the interaction between women's mental, physical and sexual health. The Women, Immunity and Sexual Health (WISH) lab investigates the ways that sexual behavior impact women's immune and endocrine function, as well as ways to help women with mental and/or physical health conditions have happy, healthy sexual lives. We also focus on helping survivors of sexual trauma through basic science and clinical research. Our research draws from evolutionary and feminist science perspectives, and uses methods from multiple fields, including measures of hormones and immune markers, psychophysiological measures of sexual and autonomic arousal,  clinical trials, surveys and interviews, and more. "



Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on February 02, 2019, 12:09:05 AM
Very interesting, Quantum.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on February 02, 2019, 12:14:51 AM

Thanks everyone for your patience !


Yes! Thank you *everyone*, with just a little extra thanks to the early donor$!





Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Jimmy on February 02, 2019, 04:02:03 AM
Im really happy to hear the great news!

I see the selection of the research team is brilliant!! this time. When you read through their profiles, you feel they are they are specialized in POIS.

Thank you demo & everyone!

Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Vandemolen on February 02, 2019, 05:45:55 AM
The Project Title ‘Autonomic, endocrine, and immune mediators of Post-Orgasmic Illness Syndrome’ sounds promising. Thanks Demo, Quantum, Steffie, NORD and all the others.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on February 02, 2019, 03:03:43 PM
Im really happy to hear the great news!

I see the selection of the research team is brilliant!! this time. When you read through their profiles, you feel they are they are specialized in POIS.

Thank you demo & everyone!
Thanks, Jimmy!
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on February 02, 2019, 03:04:48 PM
The Project Title ‘Autonomic, endocrine, and immune mediators of Post-Orgasmic Illness Syndrome’ sounds promising. Thanks Demo, Quantum, Steffie, NORD and all the others.
Thanks, Vandemolen!
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on February 11, 2019, 01:28:19 AM
Dr. Tierney Lorenz: one of our POIS Research
Team Primary Investigator’s presentations
https://m.youtube.com/watch?v=00Xwyq2xzGM

Women, Immunity and Sexual Health | Dr. Tierney Lorenz |
Kinsey Institute (now at U of NE)

(https://pbs.twimg.com/media/BocBt5-IIAAOfVY.jpg)


(https://www.iu.edu/~images/dams/260293_actual.jpg)



Dr Lorenz (now at University of Nebraska, previously at Kinsey Institute)  is not speaking about POIS, this is just to give you an idea of the type of research she specializes in.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on February 11, 2019, 01:29:18 AM
Dr. Nicole Prause: one of our POIS Research
Team Co-investigator’s TEDx presentations
https://m.youtube.com/watch?v=aK-zBBSqFV4

Studying Sexual Rewards: It may not be orgasm | Dr. Nicole Prause | TEDxBoulder

Prior to founding Liberos LLC, Dr Prause was also with Kinsey, plus UCLA.


(https://s3.amazonaws.com/podcast_thumbnails/podcasts/thumbnails/000/000/666/large/1-P1630136.JPG?1478706790)


(http://bouldersource.com/wp-content/uploads/2015/09/Tedx-Boulder.jpg)

Dr Prause is not speaking about POIS, this is just to give you an idea of the type of research she specializes in.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Muon on February 11, 2019, 10:00:30 AM
Her articles:

https://www.ncbi.nlm.nih.gov/pubmed?term=Lorenz%2C%20Tierney%20K%5BAuthor%5D
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on February 11, 2019, 12:15:41 PM

Her [Dr Lorenz] articles:

https://www.ncbi.nlm.nih.gov/pubmed?term=Lorenz%2C%20Tierney%20K%5BAuthor%5D


Thank you, Muon!!


Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Muon on February 17, 2019, 12:18:20 PM
Could we kick participants who complain about the upcoming study out this time around? I don't want to see another loose cannon slowing down the study or even canceling it.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: fernab on February 17, 2019, 02:50:29 PM
Who is complaining? In which thread??
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Muon on February 17, 2019, 03:03:08 PM
Who is complaining? In which thread??

Our previous study funded by poiscenter was cancelled because of complaints from one single patient.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: fernab on February 17, 2019, 03:14:39 PM
Must we agree at 100% to continue with this program? Which are the rules??
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on February 17, 2019, 03:16:53 PM
We are committed.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: fernab on February 17, 2019, 03:19:31 PM
Ok demo, thx for the info.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on February 24, 2019, 10:21:49 PM
You’re most welcome, fernab!
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on March 05, 2019, 09:01:49 AM
YouTube videos by Dr. Tierney Lorenz, our POIS Research Primary Investigator:

5 YouTube videos:
https://m.youtube.com/channel/UCuJkuWAgvwtzz6kE9dFN0CQ/videos

https://m.youtube.com/watch?v=00Xwyq2xzGM

https://m.youtube.com/watch?v=RVDRbsoMEBQ


Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on March 05, 2019, 09:11:24 AM

YouTube videos by Dr. Nicole Prause, our POIS Research Co-Investigator

https://m.youtube.com/watch?v=aK-zBBSqFV4

https://m.youtube.com/watch?v=SWolDGHom_4

https://m.youtube.com/watch?v=5wihRWBiz5s

https://m.youtube.com/watch?v=GzpwA8M0SdY

https://m.youtube.com/watch?v=pNEDAdF0LVU

https://m.youtube.com/watch?v=2kReu0ZRhag

https://m.youtube.com/watch?v=Ss2RxCZ6Li8

https://m.youtube.com/watch?v=wfXBRw48vao
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Nas on March 06, 2019, 12:28:47 PM
Dr. Nicole Prause, our POIS Research Co-investigator

Her lab is 20 minutes from my house, so I will visit, either as POISCenter representative, POIS Research study volunteer, or both.

(http://s3.amazonaws.com/production.mediajoint.prx.org/public/piece_images/505944/FullSizeRender_small.jpg)
God's speed!
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: fernab on March 06, 2019, 12:37:22 PM
Hi Demo,

Have they began with the research program?.... Or not yet?
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Muon on March 06, 2019, 12:38:27 PM
I thought you were located in Chile Demo???
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on March 06, 2019, 02:50:52 PM
Muon, Daveman, our co-founder/admin, is from Chile.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on March 06, 2019, 02:55:10 PM
Hi Demo,

Have they began with the investigation program?.... Or not yet?

Fernab, we’re only at the beginning contractual stages between NORD and our investigative team :(

I am, however, in touch with them about weekly. Just simple things, e.g., videos they’ve made (see previous page).


Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on March 06, 2019, 02:59:45 PM
Dr. Nicole Prause, our POIS Research Co-investigator

Her lab is 20 minutes from my house, so I will visit, either as POISCenter representative, POIS Research study volunteer, or both.

(http://s3.amazonaws.com/production.mediajoint.prx.org/public/piece_images/505944/FullSizeRender_small.jpg)
God's speed!
Noted, Nas!
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: fernab on March 06, 2019, 03:00:44 PM
Ok, Demo. I don't know how this things normally goes. Will they share with us any schedule? I mean start date and how long will last the research? For instance?
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on March 06, 2019, 03:25:30 PM
fernab, the contract is for one year. We haven’t officially “started” yet. Prolly April.

We will get periodic progress summaries from NORD. The investigators only get paid as they demonstrate progress - in writing - according to guidelines established by NORD’s MAC (the investigators’ “boss”):

https://poiscenter.com/forums/index.php?topic=2462.msg21005#msg21005

This link is more up-to-date:
https://rarediseases.org/about/leadership/medical-advisory-committee/
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: fernab on March 06, 2019, 03:38:34 PM
Ok Demo, thx for the info. Sounds good.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on March 24, 2019, 03:36:53 PM
(http://www.jonlevytlb.com/wp-content/uploads/2017/11/tip-028-banner.jpg)

From our 2019 POIS Study co-investigator:

http://www.jonlevytlb.com/the-science-of-sex-with-dr-nicole-prause/


Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: fernab on March 27, 2019, 10:45:35 AM
Hi Demo,

Do you know if our researchers (Tierney Lorenz and Nicole Prause) will take into account all the possible root causes for POIS commented all around this Forum? .... Like for instance the possible theory of any latent herpes virus family infection, or the use of some drugs as finasteride (5-alpha-reductase) producing an hormonal imbalance, or many others theories...?
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on March 27, 2019, 12:25:43 PM
fernab, at this time, I only know what you know, that  the researchers (and NORD) have decided to look into “autonomic, endocrine, and immune mediators of POIS”. The 2 players (NORD and the investigators) really call the research, methodology and implementation shots. But I can tell you that - based on my interactions with them thus far - they are very empathetic to our suffering and will try hard to help us within our very modest research budget. I sense flexibility.

In that vein, I hope they can or will consider requests just as you have now made.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: fernab on March 27, 2019, 12:30:10 PM
Ok Demo, thank you for the info.

Just in case herpes virus family was confirmed to be behind POIS.... It seems there is a promising vaccine solution to herpes virus even as a therapeutical solution for those already with a latent virus infection:

http://www.virology.ws/2018/05/24/a-live-attenuated-herpes-simplex-virus-vaccine-candidate/
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Nas on March 27, 2019, 12:36:57 PM
Hi Demo,

Do you know if our researchers (Tierney Lorenz and Nicole Prause) will take into account all the possible root causes for POIS commented all around this Forum? .... Like for instance the possible theory of any latent herpes virus family infection, or the use of some drugs as finasteride (5-alpha-reductase) producing an hormonal imbalance, or many others theories...?
They're most likely going to build on previous papers published on POIS, hence the title of their investigation. So don't expect them to tackle stuff we talk about in this forum, I don't even expect that they read some of the stuff on this forum.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: fernab on March 27, 2019, 12:42:47 PM
Hi Nas,

Probably it will be as you say... But Demo says he senses flexibility.... We will see anyway....
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on March 27, 2019, 01:54:20 PM
Hi Demo,

Do you know if our researchers (Tierney Lorenz and Nicole Prause) will take into account all the possible root causes for POIS commented all around this Forum? .... Like for instance the possible theory of any latent herpes virus family infection, or the use of some drugs as finasteride (5-alpha-reductase) producing an hormonal imbalance, or many others theories...?
They're most likely going to build on previous papers published on POIS, hence the title of their investigation. So don't expect them to tackle stuff we talk about in this forum, I don't even expect that they read some of the stuff on this forum.

Hi Nas,

Probably it will be as you say... But Demo says he senses flexibility.... We will see anyway....


I agree with both of you! :)


Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on March 27, 2019, 06:03:36 PM
Hi Demo,

Do you know if our researchers (Tierney Lorenz and Nicole Prause) will take into account all the possible root causes for POIS commented all around this Forum? .... Like for instance the possible theory of any latent herpes virus family infection, or the use of some drugs as finasteride (5-alpha-reductase) producing an hormonal imbalance, or many others theories...?

fernab, I sent your Q. above - - and my posted reply to you - - to the researchers. I just got a reply:

“Thanks for the heads up Demo

In response to fernab’s question - we will be testing two specific theoretic models for POIS symptoms: auto-allergy to ejaculate vs. autonomic-endocrine dysregulation leading to hyperactive inflammatory responses following arousal and orgasm. Sadly we will not have the ability to systematically test all of the possible mechanisms, nor all of the treatments that have been developed by the community. I am amazed at the ingenuity and the persistence of the POISCenter users, and all of the work they have done to try to sound out their own theories - these efforts should be commended. But for the purposes of this research we need to take things one at a time in a systematic way, in a large enough sample to draw sound conclusions. Hence our focus on these two specific models.

That said, we will be asking as many questions as we can of the folks who participate, to try to understand how their in-lab results match up to their experiences, symptoms, treatment histories, etc. So understanding what sorts of questions are worth asking (e.g., have you ever used finasteride) is extremely important - and for that, we are actively looking through the POISCenter forum to think carefully about those assessments. Fernab and the other users can rest assured that we are listening!
TKL“



I replied with: MANY THANKS!!


Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on March 27, 2019, 06:23:02 PM

So don't expect them to tackle stuff we talk about in this forum, I don't even expect that they read some of the stuff on this forum.


Nas, you, Quantum and others have expressed that sentiment. I disagree that it’s true here with this new group.

Dr. L (Dr Lorenz uses that name for many patients & students) wrote:

“...we are actively looking through the POISCenter forum to think carefully about those assessments. Fernab and the other users can rest assured that we are listening! “
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Nas on March 27, 2019, 07:18:49 PM

So don't expect them to tackle stuff we talk about in this forum, I don't even expect that they read some of the stuff on this forum.


Nas, you, Quantum and others have expressed that sentiment. I disagree that it’s true here with this new group.

Dr. L (Dr Lorenz uses that name for many patients & students) wrote:

“...we are actively looking through the POISCenter forum to think carefully about those assessments. Fernab and the other users can rest assured that we are listening! “
Awesome reply!
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on March 27, 2019, 07:25:51 PM
Thanks, Nas!


Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: fernab on March 28, 2019, 03:24:23 AM
You were totally right Demo! Seems Dr. L is very sensitive to our forum! I find it fantastic!

As researchers, I completely understand that they need to take one thing a time and explore it in a systematic way. I totally agree on that. Suppose this is the normal procedure in any serious research work.

But I tought that we all already knew that POIS it is not due to an auto-allergy to semen. Are they study it just to confirm that It is not due to this? And try to prove It is rather due to autonomic-endocrine dysregulation?

Suppose it is something like this.... For sure there is a good reason they do it like this. I totally trust them... No need you pass this question again to them. We will see anyway. It is just to talk between us. Thank you so much to pass my previous question Demo!
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Nas on March 28, 2019, 06:01:07 AM
Hmmmm I agree with Fernab. I hope the investigation focuses on other type of immune responses rather than just focusing of allergy. Yet all papers published on POIS confirm that there are no IgE concentration so maybe they're already aware of that?
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Muon on March 28, 2019, 08:35:47 AM
I wonder how they will define a standard or protocol for penile stimulation. What's the shape of the device, pressure, acceleration, frequency, what's the length of the thrusting motion? Are these parameters constant or do you let them change in time? Different penis sizes could lead to deviations of the aformentioned parameters. This could be more tricky than you would think.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: fernab on March 28, 2019, 09:01:25 AM
Suppose they will know what to do and how to do it. We don't have to forget that also a few women also are suffering POIS?

Edit:
'....autonomic-endocrine dysregulation leading to hyperactive inflammatory responses following arousal and orgasm...' in this new part (vs. the other we already know it is not due to an auto-allergy) something we all would like to know I suppose is.... Which biomarker would be a good one to detect these inflammatory responses. It is possible to detect somehow this inflammation? Because this could lead at least to a diagnosis method.... But I also suppose that this, that many of us are wondering since long time ago...that we could think it should be simple to find or detect maybe It is not at all easy to discover or find.... What do you think guys??
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Nas on March 28, 2019, 10:27:57 AM
I wonder how they will define a standard or protocol for penile stimulation. What's the shape of the device, pressure, acceleration, frequency, what's the length of the thrusting motion? Are these parameters constant or do you let them change in time? Different penis sizes could lead to deviations of the aformentioned parameters. This could be more tricky than you would think.
I also believe that stimulating material could be present, from picture to videos, but in all honesty this could lead to anomalies in post operative mediation functionality, in which it is better to use blackjack and hookers for optimal accuracy. 
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: fernab on March 28, 2019, 10:57:50 AM
Hmmmm I agree with Fernab. I hope the investigation focuses on other type of immune responses rather than just focusing of allergy. Yet all papers published on POIS confirm that there are no IgE concentration so maybe they're already aware of that?
Maybe is just a matter of givng continuity to previous research works and lead the research to the other part:

'....autonomic-endocrine dysregulation leading to hyperactive inflammatory responses following arousal and orgasm...'

But it is possible to measure somehow these inflammatory responses? ???
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on March 28, 2019, 11:01:11 AM
You were totally right Demo! Seems Dr. L is very sensitive to our forum! I find it fantastic!

As researchers, I completely understand that they need to take one thing a time and explore it in a systematic way. I totally agree on that. Suppose this is the normal procedure in any serious research work.

But I tought that we all already knew that POIS it is not due to an auto-allergy to semen. Are they study it just to confirm that It is not due to this? And try to prove It is rather due to autonomic-endocrine dysregulation?

Suppose it is something like this.... For sure there is a good reason they do it like this. I totally trust them... No need you pass this question again to them. We will see anyway. It is just to talk between us. Thank you so much to pass my previous question Demo!
Thanks, fernab! I took a chance sending, because we have not yet officially “started”, UNL admin has to approve our “sex” project, we are still a controversial subject in the world of research, so...expect some delays in getting authorization.

I am a bit troubled too about repeating what we know. I wouldn’t mind troubling the investigative team again if we can come up with enough...evidence...to dismiss the allergy theory.

fernab, could I ask you to help manage collecting the forum wisdom to that end? If you can summarize members ‘ “short & sweet” comments to *refute* allergy, I’ll discuss with Drs Lorenz & Prause! Take your time, we have at least 8 weeks or so before “starting”

Ok with you?
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: fernab on March 28, 2019, 11:17:50 AM
Yes Demo, of course!!

I remember that Observer and Quantum told me directly that It was already proven by a chinese Dr's group (if I'm not mistaken ) or something similar.... Nas have you seen those official papers describing and proving that It is not an auto allergy?

Do you know were are those official papers? Suppose it is scientific and public information. Right?
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on March 28, 2019, 11:19:01 AM
Great, fernab!!!
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on March 28, 2019, 11:23:03 AM
If the Chinese study did that, it would be wonderful! But fernab, the investigators will also respect what forum members think as well! But let’s not burden them with more than a few SHORT paragraphs at most!


Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: fernab on March 28, 2019, 11:26:55 AM
Ok.... UNL stands for University of Nebraska Lincoln, right?

Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on March 28, 2019, 11:28:15 AM
Exactly.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Nas on March 28, 2019, 11:31:57 AM
Fernab I think every single paper on POIS refuted the involvement of serum IgE concentrations in POISers.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on March 28, 2019, 11:32:07 AM
...it is better to use blackjack and hookers for optimal accuracy.
;D ;D ;D
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on March 28, 2019, 11:59:28 AM
...there are no IgE concentration so maybe they're already aware of that?
Let’s not assume anything.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on March 28, 2019, 12:02:38 PM
fernab, feel free to create a new thread. Up to you.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: fernab on March 28, 2019, 12:03:43 PM
Ok Demo
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Nas on March 28, 2019, 12:39:45 PM
...there are no IgE concentration so maybe they're already aware of that?
Let’s not assume anything.
I wouldn't, but that's what POIS papers say. Beside the fact that it doesn't make sense that you have IgE concentrations for your own semen.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: fernab on March 28, 2019, 12:53:56 PM
I created this thread to add any other references that state clearly that POIS is not due to an auto-allergy.

Anybody can add any reference on it.

Here:
https://poiscenter.com/forums/index.php?topic=2973.0
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Spartak on March 29, 2019, 10:04:34 PM
Dr. Nicole Prause, our POIS Research Co-investigator

Her lab is 20 minutes from my house, so I will visit, either as POISCenter representative, POIS Research study volunteer, or both.

(http://s3.amazonaws.com/production.mediajoint.prx.org/public/piece_images/505944/FullSizeRender_small.jpg)
God's speed!
What a beautiful woman.
Great news, wish them best of luck!
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on March 29, 2019, 11:24:35 PM
Thanks, Spartak!
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on March 30, 2019, 11:59:35 AM
We don't have to forget that also a few women also are suffering POIS?
I haven’t seen a credible case yet.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 01, 2019, 02:40:03 PM
From the NORD researchers (thank you fernab, nanna1, et al!)


We intend to test both models (the autoimmune and autonomic/endocrine/inflammation models) as rigorously as possible. We have included the auto-immune hypothesis as (a) it is currently one of the few models that has been formally proposed and documented in the research literature, and thus any reviewer of our research would want to know why we didn’t consider it, and (b) we see evidence of POIS patients (including some on the POISCenter forum) continuing to seek treatment for a perceived auto-allergy, so there are at least some members of the community who will benefit from additional research into the model. Both for the purposes of being systematic, and to show external reviewers (and any future funders we approach to continue the research), we need to test the “standard” model against anything new we propose.

Luckily, the means by which we are testing the auto-allergy model should add no additional burden to the participants (or the research funds) as we have constructed our study to test head-to-head our hypothesized model (the autonomic/endocrine/inflammatory model) against the “standard" hypothesis (i.e., the auto-allergy model). The same measures will be used in either case - if they go one way it will support our model, and if they go the other way it will support the auto-allergy model.

Cheers
Dr L


Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 02, 2019, 03:51:30 PM
POST MOVED FROM FAMILIAR PLACE


To me, this is GREAT NEWS from the researchers!

“[We will] show...future funders we approach to continue the research...”
From: https://poiscenter.com/forums/index.php?topic=2462.msg28805#msg28805

This is the first commitment I’ve ever seen - - in my 12 years here - - from outside POIS researchers who are willing to commit to a long term strategy to successfully get this ugly disorder of ours...possibly CURED!

:) Thank you, RESEARCH TEAM! :)
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 03, 2019, 10:59:57 PM
Dr Nicole Prause, our POIS study co-investigator, talked to Reader's Digest about what happens in the brain during sex. Sex sex. Actual sex. And masturbation.
https://www.rd.com/health/wellness/happens-to-brain-when-have-sex/



Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: fernab on April 04, 2019, 03:41:38 AM
Dr Nicole Prause, our POIS study co-investigator, talked to Reader's Digest about what happens in the brain during sex. Sex sex. Actual sex. And masturbation.
https://www.rd.com/health/wellness/happens-to-brain-when-have-sex/


The following chemicals are mentioned on that article. All seems to be neurotransmiters, neurohormones or hormones:

Prolactine
Dopamine
Norepinefrine
Serotonin
Vasopressin
Oxytocin


Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 04, 2019, 11:20:40 AM
Thank you very much, fernab! Excellent extraction of some key items from the article. Pertinent to some of our forum’s investigations.

We have now moved on to the next page, so I have inserted my article posted quote. Hope that’s ok with you.


Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 04, 2019, 11:48:19 AM



To me, this is GREAT NEWS from the researchers!

“[We will] show...future funders we approach to continue the research...”
From: https://poiscenter.com/forums/index.php?topic=2462.msg28805#msg28805

This is the first commitment I’ve ever seen - - in my 12 years here - - from outside POIS researchers who are willing to commit to a long term strategy to successfully get this ugly disorder of ours...possibly CURED!

:) Thank you, RESEARCH TEAM! :)


Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: fernab on April 04, 2019, 12:29:21 PM
Thank you very much, fernab! Excellent extraction of some key items from the article. Pertinent to some of our forum’s investigations.

We have now moved on to the next page, so I have inserted my article posted quote. Hope that’s ok with you.
Perfect Demo!
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: devastated on April 07, 2019, 03:13:42 PM
Well done demo (and everyone else involved)! At last some truly hopeful news!

I was so disappointed / depressed lately that had even stopped checking the forum. After all, this year I "celebrate" 3 decades of heavy and life-ruining POIS. Following the community ever since 2007 from the Nakedscientists forum has left me perplexed more than anything else.

Is there any way for us residing in Europe to somehow assist during this process? Will there be any formal questionnaires addressed to remote POIS sufferers for example?

Thanks once again for not giving up the efforts!



Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Nas on April 07, 2019, 05:16:14 PM
From: Postorgasmic Illness Syndrome: What do we know so far? (http://www.rarediseasesjournal.com/articles/postorgasmic-illness-syndrome-what-do-we-know-so-far.pdf)

"Further research on the reactivity of healthy men to autologous semen, the roles of neurotransmitters in POIS as well as the relationship between POIS and PE need further investigation."

First Point: The role of reactivity to semen in healthy men is necessary to discern if Waldinger's method is an objective diagnosis criteria for POIS.
"They performed a SPT and other intracutaneous tests in a patient with POIS and three healthy controls5. The results countered the immunemediated hypothesis; three healthy men without POIS showed positive skin test reactions to injection with autologous semen."

Second Point: The role of brain symptoms seem to be odd and out of place considering the immune reaction that is associated with POIS, deeper investigation on this topic could save POIS sufferers from the most debilitating aspect of POIS.

Third Point: PE also seems odd but perhaps relevant towards discerning the mysterious mechanism of POIS.
 
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Nas on April 07, 2019, 07:30:11 PM
I also want to emphasize that we're not telling the Researchers how to do their job, what ever is posted here in this forum is only a friendly reminder and almost an effort to aid the current investigation. I hope they understand this because we're 100% not as qualified as the research team! :)
It's also why I think this forum is still a community based forum and not an academic forum by all means.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 08, 2019, 08:14:49 AM
Premature ejaculation.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: fernab on April 08, 2019, 08:22:16 AM
Ok. Thank you Demo!
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 08, 2019, 08:25:11 AM
devastated,  thanks for the compliments. Unfortunately there is no way to participate in the study itself.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 08, 2019, 11:57:52 AM

Ok. Thank you Demo!
You’re welcome, fernab.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Observer on April 08, 2019, 02:05:28 PM
Hi Demo,

Do you know if our researchers (Tierney Lorenz and Nicole Prause) will take into account all the possible root causes for POIS commented all around this Forum? .... Like for instance the possible theory of any latent herpes virus family infection, or the use of some drugs as finasteride (5-alpha-reductase) producing an hormonal imbalance, or many others theories...?
They're most likely going to build on previous papers published on POIS, hence the title of their investigation. So don't expect them to tackle stuff we talk about in this forum, I don't even expect that they read some of the stuff on this forum.

Well, I think we should wait and see their approach. I am confident they will get major conclussions after doing this research.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 08, 2019, 02:20:59 PM
Observer, thanks for reinforcing.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 22, 2019, 08:38:07 PM
I’m discussing this
sometimes-delayed POIS onset of symptoms after sex
with our NORD researchers.
Thanks EVERYONE! Please see fernab’s poll!

https://tinyurl.com/y2ryobmq
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 23, 2019, 08:46:21 PM
IN THE NEWS!

Innovation Crush blog: text and PODCAST
Dr. Nicole Prause (our POIS Study co-Investigator)
All Sex Everything
Apr 23, 11:06 AM

Around 25:00 on the podcast she mentions POIS and our new project briefly

(https://static1.squarespace.com/static/51e46531e4b0b50a199639bd/t/55ba2145e4b028aa8f30990b/1438261599192/dr-nicole-prause.JPG)


https://tinyurl.com/y26xk5ks
Title: POIS 2019-2020 NORD RESEARCH STUDY
Post by: Limejuice on April 24, 2019, 11:30:53 AM
Thanks for the video - she sounds ready for the study! Personally I’m excited about this study! It’s been an ongoing effort for 6 years that our community has lead... the vision, planning, funding, etc. Essentially this is how we control our fate - get our own personal POIS Dr instead of seeing Drs that don’t understand or want to help.

Special thanks to those members that devote significant time and energy towards this - Demo and others!
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 24, 2019, 11:46:24 AM
Limejuice, many thanks for your support!!

And thank you for your magnificent contributions to/from the.......

(https://fehac.nl/wp-content/uploads/2013/07/Oldtimer-Club-De-Hondsrug.png)
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Observer on April 24, 2019, 05:23:32 PM
I really like Dr. Prause’s background and her focus on the changes orgasm has in our body. As I said before, I suspect the neurotransmitters released in the moments after the orgasm play a significant role in POIS, and probably something is not occurring as it should. The release of a "wrong" neurochemical cascade could result in POIS symptoms.

We should be encouraged for her previous studies and her knowledge about the brain response to orgasm.
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 24, 2019, 05:46:27 PM
Thanks so much, Observer!!

Observer is also A Member In Good Standing ( ;D ) of the...


(https://fehac.nl/wp-content/uploads/2013/07/Oldtimer-Club-De-Hondsrug.png)

Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 26, 2019, 11:58:47 AM




IN THE NEWS!

Innovation Crush blog: text and PODCAST
Dr. Nicole Prause (our POIS Study co-Investigator)
All Sex Everything
Apr 23, 11:06 AM

Around 25:00 on the podcast she mentions POIS and our new project briefly

(https://static1.squarespace.com/static/51e46531e4b0b50a199639bd/t/55ba2145e4b028aa8f30990b/1438261599192/dr-nicole-prause.JPG)


https://tinyurl.com/y26xk5ks

Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: demografx on April 30, 2019, 09:50:22 PM



Dr. Nicole Prause, our POIS Research

Co-investigator, was in a PBS-TV Series



(https://i.pinimg.com/736x/16/6f/11/166f11557822818422306b6d28cb5ff6.jpg)

(https://image.pbs.org/video-assets/pbs/secret-life-of-scientists/232041/images/mezzanine_632.jpg.focalcrop.1200x630.50.10.jpg)


Her video:

https://tinyurl.com/y4trvo6o

Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Disaster on December 17, 2019, 12:58:38 AM
What ever came of the 2018 study search? Can you fill me in or provide me a link to info? Thanks
Title: Re: Our New RFP ( Request For Proposal) for the new study is out !
Post by: Quantum on December 17, 2019, 11:23:08 AM
What ever came of the 2018 study search? Can you fill me in or provide me a link to info? Thanks

In preparation phase, will unfold in the next months.  Medical research is a very slow process, with tons of regulations and controls.