Author Topic: POIS NORD RESEARCH STUDY  (Read 148285 times)

Quantum

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #520 on: August 09, 2022, 09:42:23 PM »
I tried to participate in this study over 2 years ago and when I met one of the researchers, it seemed very off to me so I never pursued it. I have been malpracticed by Dr. I Goldstein, a doctor that this forum recommended (guy is highly irresponsible and is still being recommended by the forum, so who really wants to help who?). I really hope that members are being safe when participating in these studies, and I will fully support them if they feel that they have been harmed as a result of negligence or irresponsibility from the doctors or researchers that this forum is mentioning. I would also like admins to do the same. Mistakes happen, but irresponsibility, negligence, and intentional lies are different and should be held accountable. I just hope that members are able to find their relief method on time from people they can truly trust and the information they create so that they can pursue happier lives.

HI Kit,

The goal of the POIS doctors list is to let members know about doctors who know about POIS. A physician who knows about POIS can confirm to a patient if he has POIS or not, based on the criteria set by Dr Waldinger.  He can also offer some understanding and support, rather than thinking the patient is making up a story. This is far better than meeting with a doctor that has no clue about what POIS is, and has no interest in it, and sends you to a psychiatrist.   However, there always has been a warning note at the top of the POIS doctor list stating that those doctors have no established treatment to offer, because nobody knows yet what is the cause of POIS, and there are no recommended treatments for POIS. All POIS treatments that could be offered by the Doctors on this list or any other doctors are EXPERIMENTAL treatments. 

POISCenter had never recommended any treatment for POIS, by any of these doctors or other doctors. We only suggest consulting a doctor that already knows about POIS because those doctors take POIS patients seriously and really want to help.  However,  If anyone accepts to try an experimental POIS  treatment offered by any doctor, it this AT THEIR OWN RISK. 

So, when you say that it is wrong to have Dr. Goldstein on our list of doctors who know about POIS, what you are saying is that you never read the warning at the top of the thread. You act as if we wrote, " go see any of these doctors, they all have treatments they want to try on POIS sufferers, and we recommend you accept any of these treatments, without any discernment".  Sorry, but we never wrote that, quite the opposite.  And, one of the rules of POISCenter is to not give any medical advice.  All we do is share what works for members, like in the POIS types chart, and from there, other members are free to discuss those methods with their doctors or health professionals. 

I am really sorry that this experimental treatment has not been beneficial for you and has caused you problems. However, it is not acceptable to say that we are "highly irresponsible" because the name of Dr. Goldstein is on the POIS Doctors List.  He is a Doctor who knows about POIS and is interested in POIS research, but we have no control over his professional activities, his hypothesis on POIS, and the treatments he wants to explore.  However, when you contacted me in PM about your bad experience with the procedure called TFESI you had from him, I immediately added a warning under Dr. Goldstein's entry on the POIS Doctors list, and this warning is still there to this day.

This cannot be overstated to all members:  there is no established treatment for POIS, so be very, very careful about any treatment offer made by any doctor, even if this doctor is on the POIS Doctors list of POISCenter !  This list is in no way a sponsoring or an endorsement of any treatment they would propose to you, and you have the entire responsibility of evaluating the risks and accepting or not.  Do not hesitate to consult with other physicians before taking a decision, of course.


About the upcoming study, I want to make it clear to anybody that would want to enroll in it:  it will be an experimental study, to try and find what causes POIS, and what markers can be found in the body and blood of POIS sufferers, among other things.  All those members who expect a miracle and a quick fix, like if this study was their last chance in life, would be better not to participate in the study, because their expectations are too high.  Also, POIS will have to be triggered at some point in the stud, because, can you study the effect of POIS if there is no POIS ?  I hope I made it clear, that those who do not have the guts to go through a study should stay home.  The last thing we want is another fragile individual who will cost another 2 years to the POIS community by compromising the 2022 POIS study with an official complaint.   

We all have to understand that participating in this upcoming POIS study is an opportunity to help the entire POIS community, and not necessarily a comfortable one, but a highly valuable one.  Also, this study is highly regulated by strict rules, and there is an independent board that makes sure these rules are respected by the researchers, throughout all of the steps of the study.  This means that everything will be done to ensure the security of the participants, and the maximum comfort for them.  But, again, be prepared to be in a POIS state somewhere during the study, otherwise, how could you study POIS ?  Also, there may be questions about your sexuality, asked with respect and professionalism of course, but some may feel uncomfortable with this. So, before applying to participate in the POIS 2022 study, be sure that you are willing to accept some level of discomfort.  And this will be a great service to the POIS community, as you will help POIS research progress.

 
« Last Edit: August 10, 2022, 07:59:21 AM by Quantum »
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

MisterM

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #521 on: August 11, 2022, 10:21:15 AM »
Is it still possible to sign up for this study?  I live in N.C., but actually went to school at the University of Nebraska!

-M
« Last Edit: August 11, 2022, 10:39:14 AM by demografx »

demografx

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #522 on: August 11, 2022, 10:40:03 AM »
Is it still possible to sign up for this study?  I live in N.C., but actually went to school at the University of Nebraska!

-M

Yes. We will make an announcement as soon as we are ready to roll :)
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: POIS 2023 NORD RESEARCH STUDY
« Reply #523 on: September 02, 2022, 04:10:41 PM »

POIS 2023 NORD RESEARCH STUDY

For the study of post-orgasmic illness syndrome, with funding from POISCenter.com:
Tierney Lorenz, Ph.D., University of Nebraska-Lincoln (Lincoln, NE); Autonomic, endocrine, and immune mediators of post-orgasmic illness syndrome

From Dr Nicole Prause
University of California,
Los Angeles
(UCLA)
POIS co-Investigator

POISCenter-funded 2022 Study posts:
https://poiscenter.com/forums/index.php?topic=3006.0


« Last Edit: January 05, 2023, 11:13:43 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Muon

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #524 on: September 15, 2022, 09:09:36 AM »
Will they be measuring blood pressure pre and post Orgasm? This parameter seems to be overlooked.
« Last Edit: September 15, 2022, 05:40:58 PM by demografx »

demografx

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #525 on: September 15, 2022, 06:13:36 PM »

Will they be measuring blood pressure pre and post Orgasm? This parameter seems to be overlooked.


No, it’s cost-prohibitive in our budget. They would collect so many things if costs were unlimited!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Muon

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #526 on: September 15, 2022, 08:25:25 PM »

Will they be measuring blood pressure pre and post Orgasm? This parameter seems to be overlooked.


No, it’s cost-prohibitive in our budget. They would collect so many things if costs were unlimited!
Understandable, perhaps a target for future studies.

demografx

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #527 on: September 17, 2022, 01:20:04 PM »


For those of you who are not aware that our original scope of study has expanded significantly
Demo



!

VERY EXCITING 2023 POIS RESEARCH NEWS!



“Hey Demo,

My name's Eric and I've been a member of the forum for a while now.  I only learned about the UNL [NORD] study recently and decided to investigate.  After learning of a few deficiencies as a result of limited funding (they weren't going to look into delayed onset symptoms and other autoimmune/inflammatory biomarkers) I decided to get in contact with them to see how much funding they would require to expand their study to cover the things I thought were important.

I asked them to give me numbers for how much they would need for the basic additions I requested along with any other ones they could think of for their "dream" study.  They came back to me with some ideas which I thought were good.

I and my family's foundation have decided to fully fund the "dream" study!  Before I gave them the go ahead, I had asked Quantum if he knew any medical researchers in the forum I could contact.  That's why I'd gotten in touch with him prior.  Thanks again Quantum! 

I also reached out to an autoimmune researcher friend of mine for suggested expansions to the study and she gave me a few that Tierney and Nicole hadn't thought of so those might be added too.

The study will be tracking more inflammatory biomarkers, including delayed onset people, adding research assistants, larger sample size, etc.  I've been asked not to share their hypotheses or the study proposal so I can't share those details.  Suffice it to say, the study should be more comprehensive than before and hopefully allow for some real progress.

I'm personally deeply motivated to increase visibility and research for POIS (since it's taken away a lot of joy from my life).  This study seems like a great start.

Thanks for all your hard work organizing this study!  The funding is almost the easy part, I think what you did was incredible.  Hope you keep up your good work!

Thanks,
Eric”

Thank you, Eric!
Best wishes!
Demo
« Last Edit: January 05, 2023, 11:14:15 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: POIS 2022-3 NORD RESEARCH STUDY
« Reply #528 on: October 27, 2022, 12:39:26 PM »


Dr. Nicole Prause, NORD Co-Investigator,
2022 POIS Research Study



Masumi Padhye, MD Candidate 2023


Dr Prause is at a Urology Conference. It is a joint meeting of ISSM/SMSNA, at which Masumi Padhye (above) is presenting,

“Flibanserin For Post-Orgasmic Illness Syndrome”

In other words, "someone is trying it for POIS".

« Last Edit: November 05, 2022, 01:05:41 AM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Limejuice

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Re: POIS 2022-3 NORD RESEARCH STUDY
« Reply #529 on: October 27, 2022, 02:21:14 PM »
Masumi Padhye seems smart and and is an up and coming star in the medical field - specifically sexual medicine.  Something the industry needs more experts in.
« Last Edit: November 05, 2022, 01:05:09 AM by demografx »

demografx

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Re: POIS 2022-3 NORD RESEARCH STUDY
« Reply #530 on: October 27, 2022, 05:08:25 PM »

Masumi Padhye seems smart and and is an up and coming star in the medical field - specifically sexual medicine.  Something the industry needs more experts in.


Thanks, Limejuice!
« Last Edit: November 05, 2022, 01:04:38 AM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: POIS 2022-3 NORD RESEARCH STUDY
« Reply #531 on: October 27, 2022, 05:32:48 PM »


Dr. Nicole Prause, NORD Co-Investigator,
2023 POIS Research Study



Masumi Padhye, MD Candidate 2023


Dr Prause is at a Urology Conference. It is a joint meeting of ISSM/SMSNA, at which Masumi Padhye (above) is presenting,

“Flibanserin For Post-Orgasmic Illness Syndrome”



Padhye, M1; Trowbridge, P2; Rubin, D3

1 - Chicago Medical School (Rosalind Franklin University of Medicine & Science)
2 - Rush Medical College
3 - Georgetown University (MD Urologist)


Interesting: a case of POIS in a patient physician. I’ve always been curious how a physician handles his/her own POIS.

Also interesting: the novel
*off-label male use* of Flibanserin, which is a drug originally targeted at women - - Demo




Introduction:
Postorgasmic illness syndrome (POIS) is a rare disorder with ~50 cases recorded in the literature over the last 10 years. POIS is characterized by symptoms of flu-like fatigue, myalgias, fevers, mood disturbance, congestion, rhinorrhea and conjunctival pruritus, that begin within seconds to hours after an orgasm for a duration of 2-7 days. The most well described pathophysiologic hypothesis to date is immunologic based hypersensitivity reaction, but other hypotheses include withdrawal from endogenous opioids, dysregulated neuroendocrine response or autonomic nervous system. These mechanisms are elucidated by patient responses to different treatments including, antihistamines, dopamine agonists, benzodiazepines, NSAIDs and SSRIs. However, no standardized treatment has yet been developed.

Objective:
Here we describe a case of intractable POIS in a patient physician, who had a remarkable response to flibanserin nightly and gabapentin nightly for pain.

Methods:
Patient is a 40 year old male with acquired post orgasmic illness syndrome that started 10 years prior. Symptoms include headaches, muscle pain, numbness, weakness, irritability, low energy, anhedonia, and brain fog. Symptoms start 30 minutes after every orgasm and persist for 1 week. He reports fluctuations in his libido when experiencing these symptoms. Orgasms feel good to him and do not change with POIS. Pre-ejaculate and ejaculate trigger his POIS. He reports no problems with erections. He has tension headaches with arousal which affect his day but he does not experience full POIS symptoms. He does not report issues with stress except during POIS symptoms. He is a nonsmoker and has up to two drinks per month. He denies trauma, general pain, back injuries or pain, bowel dysfunction or abnormal penile curvature. He has been able to reduce symptom duration from 1 week to 4 days with a combination of bupropion, lexapro, silodosin, ritalin, and tramadol; however, the duration and intensity of symptoms is still significant. Patient was trialed on a combination of flibanserin and gabapentin. He was advised to take 200 mg gabapentin nightly and 100 mg flibanserin nightly.

Results:
The combination of flibanserin and gabapentin significantly improved the patient's symptom duration and intensity. He now experiences mild symptoms for one day and has stopped taking his other medications. He also reports that his libido has markedly improved, helping him and his wife restore their intimate relationship.

Conclusions:
The use of flibanserin, a serotonin receptor 2A antagonist and serotonin receptor 1A partial agonist has not yet been described in the literature, and supports a role of serotonin in the pathogenesis of POIS. Serotonin 2A is a known inhibitor of the sexual response and has a significant impact on mood, memory and cognition. As such this neuroendocrine dysregulation could modulate many of the symptoms present in POIS including brain fog, anhedonia and low energy. The variability of medications that provide relief in different patients emphasizes the importance of taking a multidimensional and individualized approach to treating patients' distinct presentations.
« Last Edit: May 26, 2023, 10:52:03 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Limejuice

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Re: POIS 2022-3 NORD RESEARCH STUDY
« Reply #532 on: October 27, 2022, 11:49:19 PM »
Question - has this drug been used by other POISers (or a drug of similar class)?  A forum search didn't find anything.
« Last Edit: November 05, 2022, 01:02:59 AM by demografx »

demografx

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Re: POIS 2022-3 NORD RESEARCH STUDY
« Reply #533 on: October 28, 2022, 12:27:56 AM »

Question - has this drug been used by other POISers (or a drug of similar class)?  A forum search didn't find anything.


I’m guessing that it’s a novel approach, Limejuice. It’s certainly an “off-label application”. Meant for females, not males.
« Last Edit: November 05, 2022, 01:01:48 AM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Progecitor

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Re: POIS 2022-3 NORD RESEARCH STUDY
« Reply #534 on: October 28, 2022, 04:32:17 PM »
Question - has this drug been used by other POISers (or a drug of similar class)?  A forum search didn't find anything.

Certainly none has reported about flibanserin, still many similar drugs have been used by members. You could check this post for details:
https://poiscenter.com/forums/index.php?topic=4061.msg43858#msg43858
« Last Edit: November 05, 2022, 01:00:49 AM by demografx »
The cause is probably the senescence of sexual organs and resultant inducible SASP, which also acts as a kind of non-diabetic metabolic syndrome.

demografx

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Re: POIS 2022-3 NORD RESEARCH STUDY
« Reply #535 on: October 28, 2022, 06:53:25 PM »

Question - has this drug been used by other POISers (or a drug of similar class)?  A forum search didn't find anything.


Certainly none has reported about flibanserin, still many similar drugs have been used by members. You could check this post for details:
https://poiscenter.com/forums/index.php?topic=4061.msg43858#msg43858



Thanks, Progecitor!
« Last Edit: November 05, 2022, 01:00:14 AM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

psy

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Re: POIS 2022-3 NORD RESEARCH STUDY
« Reply #536 on: October 29, 2022, 03:25:57 PM »




“Flibanserin For Post-Orgasmic Illness Syndrome”



Has this been published anywhere?
« Last Edit: November 05, 2022, 12:59:31 AM by demografx »

demografx

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Re: POIS 2022-3 NORD RESEARCH STUDY
« Reply #537 on: October 29, 2022, 06:05:33 PM »




“Flibanserin For Post-Orgasmic Illness Syndrome”




Has this been published anywhere?




psy, it has *just now* been presented here:
https://issmsmsna2022.org/
(see announcement at bottom of this page)



It will be published in the Journal of Sexual Medicine


An official journal of the International Society
for Sexual Medicine (ISSM)


I have contacted the presenter, Masumi Padhye:


Masumi Padhye seems smart and and is an up and coming star in the medical field - specifically sexual medicine.  Something the industry needs more experts in.

Limejuice, thanks again,
Demo

« Last Edit: May 26, 2023, 10:48:39 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

psy

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Re: POIS 2022-3 NORD RESEARCH STUDY
« Reply #538 on: October 29, 2022, 08:27:21 PM »
Great, thanks!
« Last Edit: November 05, 2022, 12:58:04 AM by demografx »

demografx

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Re: POIS 2022-3 NORD RESEARCH STUDY
« Reply #539 on: October 29, 2022, 09:45:25 PM »
« Last Edit: November 05, 2022, 12:57:30 AM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business