VERY EXCITING 2025 POIS SCIENTIFIC 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
NORD/POIS RESEARCH STUDY UPDATEEveryone, please keep your fingers crossed (a proven scientific methodology :) ). Today is the FULL IRB REVIEW of our self-funded POIS study at University of Nebraska - Lincoln (UNL) & University of California, Los Angeles (UCLA) laboratory - L.A.
From Dr Nicole Prause
May 8, 2019:
Hi Demo,
Dr. Lorenz and I received the pre-review from
the IRB [defined in IRB explanatory post above - Demo] just yesterday. We read the comments, and they appear very reasonable. That is, we expect that we can fully satisfy all of the questions. We have a meeting scheduled between the two of us next week to generate our response.
The full review remains scheduled for May 30th. The pre-review is just a chance to catch anything that the reviewer feels would have been likely to create questions during the full review to speed up the process.
Feel free to share this information.
NP
One further note on this subject: this study is a basic science investigation into the mechanisms that lead to POIS symptoms, not an intervention study. So Dr. Lorenz & Dr. Prause won’t have multiple recruitment sites (like you might see in a treatment study, where there are multiple clinical centers tracking different cohorts of patients). Just the one in Los Angeles, where they can use the very specialized testing center at Liberos, LLC.
The Institutional Review Board (IRB) is an administrative body established to protect the rights and welfare of human research subjects recruited to participate in research activities conducted under the auspices of the institution with which it is affiliated.
In our case, it’s the UNL (University of Nebraska - Lincoln) IRB
I will try to alert the FB members. What should I tell them? To make accounts in this forum? Or they can send me their email address and I can send them to you?It looks like our email system is *not* ready to use. We will use posting.
Orwellian measures, a small step closer to 1984.Come to Iraq, you can see the link here haha.
Thanks for the invitation Nas but there is no need. Western Europe is already transforming into the next Middle East, I just have to be patient.Orwellian measures, a small step closer to 1984.Come to Iraq, you can see the link here haha.
Can't acces the link because of EU censorship, nice:
Yes, I see the same error message...
But it’s in Arabic!!Orwellian measures, a small step closer to 1984.Come to Iraq, you can see the link here haha.
Thank you Demo for putting the complete text!!
Nas, would u mind re-posting *gifs* please in another section?sure
We’re showing this thread to researchers. Just want to make the joking smaller here, like our “Arabic” link humor.
If u think it’s unfair I’ll move my joking as well.
Thanks!
Demo
You’re a gentleman-and-a-scholar, Nas!Google disappoints no one :D
(Dunno If u heard that expression, it might be old school! ;D )
Nas, feel free to re-post anything Grant-related here @ FBIronically there are two POIS groups on FB. One is run by Fernando from Brazil.
I only ask that you credit us as the source. Unless you see it elsewhere first. In that case, please inform us, too ;D
Our aim is to help *all* POISers, worldwide, not just our forum members.
Nas, can you coordinate with Fernando from Brazil?I'll try. I'm too busy lately doing abseloutly nothing so be patient on me Demo ;D
"direct health problems like postorgasmic illness syndrome, in which men are struck with headaches and fatigue following ejaculation. It might be due to some sort of autoimmune response to ejaculate, or it might have something to do with the number of contractions these men have, which the device can measure."
(https://media.wired.com/photos/5d26836e9a6762000863be69/master/w_1164,c_limit/Science_spiralprobe325.jpg)
POIS is mentioned in this article.
”How we made our orgasm detector”
Dr. Nicole Prause, our NORD POIS Co-Investigator
https://www.wired.com/story/the-strange-saga-of-the-butt-plug-turned-research-device/
"direct health problems like postorgasmic illness syndrome, in which men are struck with headaches and fatigue following ejaculation. It might be due to some sort of autoimmune response to ejaculate, or it might have something to do with the number of contractions these men have, which the device can measure."
(https://media.wired.com/photos/5d26836e9a6762000863be69/master/w_1164,c_limit/Science_spiralprobe325.jpg)
POIS is mentioned in this article.
”How we made our orgasm detector”
Dr. Nicole Prause, our NORD POIS Co-Investigator
https://www.wired.com/story/the-strange-saga-of-the-butt-plug-turned-research-device/
What? how the heck does that relate to the symptoms we suffer from?
This is not a question for the researchers but just an observation:Thanks, Muon. Interesting! If you still want to pass along to NORD researchers, please remind me when the POIS Study gets rolling.
All 3 patients (myself, my brother and Simon66) on this forum tested negative for IL-6. Other inflammatory cytokines like IL-1b and TNF-alpha also showed normal results.
Where are the results of all the main POIS Surveys taken place here. Are they possible to download for me somewhare?
Links to POIS Research Studies abstracts (Those articles cannot be accessed in full for free, because of copyright issues) :
http://www.ncbi.nlm.nih.gov/pubmed/11995603
http://www.ncbi.nlm.nih.gov/pubmed/21241453
http://www.ncbi.nlm.nih.gov/pubmed/21241454
http://www.ncbi.nlm.nih.gov/pubmed/25630453
http://onlinelibrary.wiley.com/doi/10.1111/j.1743-6109.2010.01707.x/abstract
Poster Presentation: http://f1000research.com/posters/1758
http://casereports.bmj.com/content/2010/bcr.10.2009.2359.short?rss=1
https://www.researchgate.net/publication/316834619_Post-Orgasmic_Illness_Syndrome_Where_Are_We ( 2017-07, new article, available in whole, but it is only a short review )
http://www.smr.jsexmed.org/article/S2050-0521(17)30116-6/abstract ( 2017 Review article by Department of Urology of Tulane University)
https://www.sciencedirect.com/science/article/pii/S2050116118300199 ( Korean case report, 2017-12, full article available for free)
https://www.nature.com/articles/s41443-019-0154-7 ( article published by LPM following the POIS 2018 survey done online, in which many members here have participated)
full article at : https://rdcu.be/bFIqy
Link to Waldinger's latest review article (August 2016) on POIS, Full text - - Quantum: this entire post sent to NORD researchers :
http://tau.amegroups.com/article/view/11107/11778
My impression, Nas, is that they’re not very fond of the auto-immune theory either. But since the literature addresses it, they must at least spend *some* time on it. My speculation.Who? the investigation team?
They believe time is much more well spent testing neurological changes that lead to the many brain symptoms in POIS.
My impression, Nas, is that they’re not very fond of the auto-immune theory either. But since the literature addresses it, they must at least spend *some* time on it. Just my speculation.Yeah, the doctors also recognize that. Debunking the most popular hypothesis of POIS is definitely part of investigative work.
Very specific equipment that you probably not gonna have access to in clinics. I'll ask them about the specific devices if you want though.
What test do they suggest?
Yes why not.Very specific equipment that you probably not gonna have access to in clinics. I'll ask them about the specific devices if you want though.
What test do they suggest?
So it really depends on where you want to investigate.
Yes why not.
Is this coming from yourself or are these words theirs?So it really depends on where you want to investigate.
Yes why not.
For example if you're looking within the dopamenergic pathway, you need a pet/mri, which is hard to get access to.
But if you could, which would probably cost a s*** tone, why not give it a test?!
s this coming from yourself or are these words theirs?No it's theirs, why?
Because you did get that answer very quickly.s this coming from yourself or are these words theirs?No it's theirs, why?
Because you did get that answer very quickly.What can I say, it's the age of social media.
. Trust me no one here is going to be suicidal for sneezing after POIS.
The doctors I spoke to...Not trying to break anyone’s anonymity, but can you reveal anything more about these doctors? Mainly because it’s so unusual to find *any* doctor with empathy or understanding of POIS! And research! How did you find them? This is all out of simple curiosity, I’ll understand if you decline to respond. Also, can you say anything about your own educational/occupational background? You seem well versed in some medical understanding. Thank you!
”Crowdfunded [from our forum!!] grant will help UNL researcher study sex-related condition [POIS]”
Dr. Tierney Lorenz, our POIS Study Principal Investigator
(http://cb3.unl.edu/wp-content/uploads/2018/08/Lorenz_cropped.jpg)
Journal Star link:
http://tinyurl.com/y48syzo6
Impressive, Nas.One of my biggest hopes for many years was to find an MD with POIS. You did it!
:) 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 POIS research progress & 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 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 Dr med
Associate Professor for Metabolic Diseases
University of Zurich
Head, Division of Metabolics
Children’s Hospital Zurich
Preston W. Campbell, III, MD
President and Chief Executive Officer
Associate Professor of Pediatrics
Johns Hopkins Cystic Fibrosis Center
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, MB, ChB
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 and Professor 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
VP, Medical Director
Scientific Services
TRIO, an FCB Health Network Company
Susan Winter, MD
Clinical Professor, Pediatrics, UCSF
Clinical Geneticist, Genetic Medicine and Metabolism, Valley Children’s Hospital
Doris T. Zallen, PhD
Professor Emerita of Science and Technology
Studies and Humanities
Virginia Tech University
Great Research News!
From: Dr. Nicole Prause
cc: Dr. Tierney Lorenz
Subject: Scientists, start your engines!
Hi Demo,
We officially have the grant funds in the accounts to spend them! I've started prepping my lab space and will begin equipment orders. I now need to hire the research assistant and do a bunch of testing, so do not expect enrollment for at least another month, but we are officially green-lit...totally...finally. :)
Thank you for your patience and have a good weekend!
Nicole Prause, Ph.D.
Yayyyy!
Congrats on this Demo. And thank you for making this happen!
Since this study has been greenlit, could we start collecting money for a potential follow up study? We could minimize the loss of time by skipping the fundraising inbetween studies.Muon, my apology for the inaccuracy of my earlier reply. It is now corrected (above).
Hi, Muon,What is the reason behind this? We can't just repeat the same process with NORD? So this is basically a one-time deal?
At this time (but it could change), NORD will not support our efforts beyond this UNL study.
Ok thanks Demo.Welcome.
Hello, it certainly has been asked before, but do you know whether it would be possible for europeans to take part in the study? When all tests could be done within, let’s say, a weeks timeframe I am seriously considering flying to L.A..
CarloFrancesco
I just received some added information from Dr. Lorenz:
POIS Study volunteer recruitment ads will appear here at the forum in about a month.
POIS volunteer testing will be done in Los Angeles. The testing itself takes place over one day, and there is a follow up set of surveys, but those can all be completed online. Testing will be done at Liberos, LLC:
http://www.liberoscenter.com/
I will most probably volunteer.
Demo
For more info on the Study:
https://tinyurl.com/y42f7hqe
Great to see movement! I’m really happy that we're getting down to business!
I'm taking vitamin D daily and there's more sunshine as well. I have little to no POIS for the moment. In the winter it shows up a little bit more, but still not too bad.
Don't know if it's because I'm older, lower testosterone, but the
Vitamin D definitely works.
Emphasis mine - - Demo
The big question remains....
Why did Daveman become a poiscenter forum lurker? :)
[Because] everything is all under great control! :) :)
Hi Demo;
Yes, we have taken vagal contributions into account.
Cheers
Dr L
Will there be a way to go to the research team nord or pois to perform tests ?Perhaps Demo can answer this one, he knows more.
Will there be a way to go to the research team nord or pois to perform tests ?Perhaps Demo can answer this one, he knows more.
Hopefully the research team can make progress on this painful research and we can have quality of life...Forum members here have bet $35,000 of their own hard-earned money that this POIS progress will happen. I believe it will.
Look for the volunteer recruiting ads soon, around December.There may be slight delays due to POIS-study equipment purchases.
What? how the heck does [the NORD research anal probe] relate to the symptoms we suffer from?
What? how the heck does [the NORD research anal probe] relate to the symptoms we suffer from?
Unnecessarily negative!
They were very gracious with your reply, but now I’m going to be much more careful what I recommend/pass along.
Try some more conciliatory wording next time.
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.
This is amazing news!!!
Thank you! From Demo, the POISCenter Admin/Mod Team & The POIS Researchers!
Does anybody know for how long the experiments are going to run? I want to fly from Europe to LA and participate, really, this is our chance.
Wow, exciting [POIS Study news]! Thank you Demo. I will check it out soon in more depth.
have a great week,
Animus
Thanks so much, Demo! I've already started looking at flights and will pm you once I am ready to make the specific plan.Investigator, please make sure you qualify before booking flights!
Hm, altough I have classical POIS symptoms, I do unfortunately not qualify. I don’t know anything about study design(a potential candidate probably shouldn’t) but has this something to do with the fact that I do not have any prior injuries(hard facts) which could correlate with(cause) POIS. ??? Or is there preference for Americans because of the language barrier or legal reasons? Maybe I should redo the questionnaire with a vpn.We do not screen out anyone based on their location. Please do not fill out the survey again, as we will report you as two people not qualifying for the same reason, if we do not catch the duplication.
"When you have an orgasm, do you have any of these symptoms start right away, last at least 2 days, and happen with every orgasm?"
I think this is clearly meant to ask if you have POIS symptoms. However, technically speaking, the symptoms don't really "start right away" in most of us. For me, they usually appear within 24 hours. Yes, occasionally they do start away, but then this would not be the case "with every orgasm." Waldinger described POIS in terms of symptoms starting a few hours following an orgasm, not "right away."
I really think "right away" should mean "within several hours and up to a day" here. In the last POIS survey that we were filling out, the questions meant to identify if the participant has POIS or not was worded more in line with the language of Waldinger and were streamlined at POIS more directly.
Speaking of making the phone appointment, I called this number several times, but it was voice mail, asking me for my contact info. But I don't want to be called while I am in the office and other people could hear. Should I leave my contact info to this voicemail or just keep trying to call again?
Noted, I won’t redo it. But I was thinking that I have classical POIS symptoms. All of them mentioned in the questionnaire minus the influenza like feeling and feaver. But of course other background infos do matter.
Regards
"When you have an orgasm, do you have any of these symptoms start right away, last at least 2 days, and happen with every orgasm?"
I think this is clearly meant to ask if you have POIS symptoms. However, technically speaking, the symptoms don't really "start right away" in most of us. For me, they usually appear within 24 hours. Yes, occasionally they do start away, but then this would not be the case "with every orgasm." Waldinger described POIS in terms of symptoms starting a few hours following an orgasm, not "right away."
I really think "right away" should mean "within several hours and up to a day" here. In the last POIS survey that we were filling out, the questions meant to identify if the participant has POIS or not was worded more in line with the language of Waldinger and were streamlined at POIS more directly.
Investigator, it’s a good point, and as you noted, the researchers aren’t trying to exclude people whose symptoms start shortly after, but maybe not immediately after, orgasm.
Dr. Prause and Dr. Lorenz will discuss.
We are only asked to call if we request a phone appointment within the hour (changed from 24 hours) , because they may not be able to accomodate our request that soon. If we pick any times in the future, they will automatically reserve the time, they will see it, and they manually confirm that they have seen it and will call.
Hope that helps. In general, we do not need to call.
We are only asked to call if we request a phone appointment within the hour (changed from 24 hours) , because they may not be able to accomodate our request that soon. If we pick any times in the future, they will automatically reserve the time, they will see it, and they manually confirm that they have seen it and will call.
Hope that helps. In general, we do not need to call.
I am still confused about this. After I completed the questionnaire, I saw a little calendar with available time slots for a short 10-minute phone appointment. These were all within the next few days. Once I click on a specific time slot, a little pop-up window appears and says "to book this time slot, call ()---" I called several times (it was during business hours in LA), but it's a voicemail that answers.
Now, I can't get to the mini-calendar again, because the only way to get there is to go through the survey, which we shouldn't do. But I still have the number written down. However, it's voicemail that answers. What should I do, should I just leave a message with my name and contact info, and ask them to call me when they have a chance, and if I can't answer, to call me again? Thanks for the clarification!
We are only asked to call if we request a phone appointment within the hour (changed from 24 hours) , because they may not be able to accomodate our request that soon. If we pick any times in the future, they will automatically reserve the time, they will see it, and they manually confirm that they have seen it and will call.
Hope that helps. In general, we do not need to call.
I am still confused about this. After I completed the questionnaire, I saw a little calendar with available time slots for a short 10-minute phone appointment. These were all within the next few days. Once I click on a specific time slot, a little pop-up window appears and says "to book this time slot, call ()---" I called several times (it was during business hours in LA), but it's a voicemail that answers.
Now, I can't get to the mini-calendar again, because the only way to get there is to go through the survey, which we shouldn't do. But I still have the number written down. However, it's voicemail that answers. What should I do, should I just leave a message with my name and contact info, and ask them to call me when they have a chance, and if I can't answer, to call me again? Thanks for the clarification!
Investigator, the researchers advise to please call the number and leave a message with your contact info and a time you could be reached. That way the team will be able to give you a followup call, confirm your eligibility, and answer questions you have about the study.
TO EVERYONE, please take the survey and, if you are eligible, sign up for a follow up call - it is very brief, just 10 minutes, and the purpose is to check your medications (which would be hard to do in an online survey) and schedule your actual lab session. The only time you would see the number (and not have a time you book for a phone appointment) would be if you tried to sign up for a spot that day - so just look for an appointment the next day.
If for whatever reason you can’t sign up for that call right away, you can take down the number and leave a message with a time you can be reached - but the best thing is to sign up for a call at the time you go through the survey.
So sad that many of us can not afford to participate.Spartak, I empathize fully with the sadness.
But I am crossing fingers for the best results.
Are we also supposed to fill out the survey if it's unlikely that we will travel to LA for the actual study? Is the survey itself already a data collection that is analyzed? I don't know whats being asked but it could potentially be helpful if analyzed by researchers as oppossed to the surveys here on the board analyzed by lay people. To describe say the comorbities, demographics, etc. of POIS sufferers.
Please post here when the recruiting ads are posted and please provide a link. I am in the SF area and would drive down for any research testing.Samir, are you caught up with the Los Angeles POIS Study info?
Please post here when the recruiting ads are posted and please provide a link. I am in the SF area and would drive down for any research testing.Samir, are you caught up with the Los Angeles POIS Study info?
Please see if you qualify!
Regards,
Demo
Thank you! I'm looking forward to hopefully being a part of it. :)Please post here when the recruiting ads are posted and please provide a link. I am in the SF area and would drive down for any research testing.Samir, are you caught up with the Los Angeles POIS Study info?
Please see if you qualify!
Regards,
Demo
Update: CONGRATULATIONS, Samir, on qualifying!!
I qualify. :)
I qualify. :) And I think many of us here would qualify--but you must fill out the survey as that is the first step.
The researchers are still actively looking for recruits and will schedule the lab day in LA around your schedule including doing it on weekends so I strongly urge you to take the survey to see if you qualify. Flights in and out of LA are quite cheap if you plan it in advance and may be the best investment you've ever made in your own battle against POIS. :)
Thank you for helping set up the study. For the first time in my life I feel a big sense of hope that we'll have a common cure for this inside of my lifetime. :)
I'm not able to participate in the study, but I'd like to thank everyone who's able to attend! Good luck everyone.
I had the chance to talk briefly one on one with a neuroscience professor and find it important to share here one of the things he said. I explained him about POIS and about the upcoming study. Here is an extraction of what he said:
1) A lot of his research is funded by the National Institute of Health (NIH), even though it is not directly related to health - it is really "basic science". It could have potential implications to health at some point in the future, but these are not direct or immediate. To put it differently, NIH can be very generous.
2) NIH is pretty conservative, though, and would most likely not fund POIS studies at the current stage. He says that what is known about POIS as of now would not be sufficient at the moment to make a good proposal for NIH funding. Basically, he said that a crowdfunded study is by far the best bet for us, given the current stage of POIS research. So yes, we are doing the (only) right thing.
3) HOWEVER, and this is most important, ***IF*** the upcoming POIS study finds some marker (could be autonomic, immune, or endocrine - whatever marker) that is different in us than it is in the control group, then NIH, he believes (based on his experience) would be interested to fund further studies. It is sufficient for the research team to be able to "sniff" something that could be wrong in us, and then it would be possible to make a case for further NIH funding.
To put 2 and 3 differently: NIH would not pay just on the basis of us saying they have brain fog after orgasm; however, if the LA study finds, say, that we all have low/high [...something...] or some weird physiological neurological response to orgasm, then his guess is that it would be much easier to obtain further funding from NIH. And he said that on our own, everyone just doing lab tests that he finds appropriate, it is quite unlikely that we hit such a marker. He was also impressed that a study has been designed on such a small budget, this is really remarkable and we all appreciate it.
His words sounded pretty encouraging to me.
Very interesting, [Investigator], thank you for sharing the professor's insights into funding.
His comment on us needing to find a marker is very insightful. The fact that we cannot "prove" we are in POIS other than by describing our symptoms has been holding us back for many years.
A test for POIS would be a huge breakthrough.
emphasis mine - - Demo
Is there the possibility of future follow up testing in the period post-orgasm? I'm concerned that saliva and blood samples are being taken before orgasm and then never again.
Articles from Dr Tierney Lorenz (https://scholar.google.com/citations?hl=nl&user=oRm8qGsAAAAJ&view_op=list_works&sortby=pubdate)
Articles from Dr Nicole Prause (https://scholar.google.com/citations?hl=nl&user=yySl87AAAAAJ&view_op=list_works&sortby=pubdate)
I had the chance to talk briefly one on one with a neuroscience professor and find it important to share here one of the things he said. I explained him about POIS and about the upcoming study. Here is an extraction of what he said:
1) A lot of his research is funded by the National Institute of Health (NIH), even though it is not directly related to health - it is really "basic science". It could have potential implications to health at some point in the future, but these are not direct or immediate. To put it differently, NIH can be very generous.
2) NIH is pretty conservative, though, and would most likely not fund POIS studies at the current stage. He says that what is known about POIS as of now would not be sufficient at the moment to make a good proposal for NIH funding. Basically, he said that a crowdfunded study is by far the best bet for us, given the current stage of POIS research. So yes, we are doing the (only) right thing.
3) HOWEVER, and this is most important, ***IF*** the upcoming POIS study finds some marker (could be autonomic, immune, or endocrine - whatever marker) that is different in us than it is in the control group, then NIH, he believes (based on his experience) would be interested to fund further studies. It is sufficient for the research team to be able to "sniff" something that could be wrong in us, and then it would be possible to make a case for further NIH funding.
To put 2 and 3 differently: NIH would not pay just on the basis of us saying they have brain fog after orgasm; however, if the LA study finds, say, that we all have low/high [...something...] or some weird physiological neurological response to orgasm, then his guess is that it would be much easier to obtain further funding from NIH. And he said that on our own, everyone just doing lab tests that he finds appropriate, it is quite unlikely that we hit such a marker. He was also impressed that a study has been designed on such a small budget, this is really remarkable and we all appreciate it.
His words sounded pretty encouraging to me.
Well, first of all, the research give all of us HOPE
I certainly do not interact much, but I am always following the news of the forum and I ALWAYS come in this topic to follow the updates on this research! It represents hope for me too, this syndrome has already hindered my life too much, I really am not the same person I was before adolescence, I remember that I felt happier more easily and that my thinking was much faster than it is today, I feel every day that passes as if I am losing my life.
This year I finish my college, degree in mathematics, but I don't know if I will be able to lead a teaching career due to the cognitive effects of POIS, I am afraid of not being able to organize my thoughts in the classroom.
Relationships, without a chance, since adolescence I already had in mind that I would live alone.
I really wanted to be part of the research as a volunteer, but I am from Brazil and at the moment I am not able to travel, so I am really hoping that through this research they will discover the cause and possibly a cure, it will make a huge difference in the lives of many people.
(I have already contacted Dr. Dr Keity Souza Santos, but unfortunately she cannot help me)
Los Angeles POIS study discussion @ reddit
https://tinyurl.com/s869zl4
Los Angeles POIS study discussion @ reddit
https://tinyurl.com/s869zl4
This type of direct communication with the research team is comforting during these uncertain times and creates more transparency.
I bet our research team is using this 'down time' to fine-tune their thinking and approach to our study. With researchers so motivated and involved this virus challenge could actually be an opportunity.I like that thinking
I [Eric] and my family's foundation have decided to fully fund the "dream" study!
THANKS ERIC
Wow, excellent. Something we/you, have looked for for a long time!
ERIC is King!
That's incredibly generous and exciting Eric! We are extremely lucky to have your support!
This is incredible. I can't thank you enough Eric.
I [Eric] and my family's foundation have decided to fully fund the "dream" study!
This blew my mind. Eric, thank you so much from the bottom of my heart.
I share Muon’s hope that they'll look at mast cell activation as part of the study.
What amazing news! Thank you Eric :)
VERY EXCITING POIS RESEARCH NEWS!
I [Eric] and my family's foundation have decided to fully fund the "dream" [POIS] study!
Superb news!!!
Dr. Nicole Prause today:Hello Demo,
“My laboratory study with Dr. Tierney Lorenz funded by the National Organization for Rare Diseases [through donor contributions @ POISCenter.com] on post-orgasmic illness syndrome is obviously on hold for COVID-19.”
Dr. Nicole Prause today:Hello Demo,
“My laboratory study with Dr. Tierney Lorenz funded by the National Organization for Rare Diseases [through donor contributions @ POISCenter.com] on post-orgasmic illness syndrome is obviously on hold for COVID-19.”
I am curious if there enough POIS volunteers who already have confirmed that they can participate in the study?
ERICCCCCC, THANKKSSSSSS !!!!!!!
8) 8) 8) 8)
...we recently got great news: The [POIS] Research Study is expanding in scope.
Thank you, it’s been a long long life struggle. And I’m still hoping for research to discover how to treat myself without becoming a groggy mess :)
We have both put a lot of time and energy into beating POIS. The new research into POIS is exciting, and I really hope they can find a treatment for everybody.
Great stuff, Eric. Highly appreciated(https://upload.wikimedia.org/wikipedia/commons/thumb/e/e0/SNice.svg/1200px-SNice.svg.png)
VERY EXCITING POIS RESEARCH NEWS!
I [Eric] and my family's foundation have decided to fully fund the "dream" [POIS] study!
Hi Demo,
Thank you so much for keeping me in the loop.
This is Wonderful news!! Many many thanks to Eric and his Family for funding more comprehensive research. It's amazing that they will do their "dream" project. And I'm excited for the researchers to have that opportunity...
This will most surely advance the scientific investigation into POIS. In a major way.
Congratulations for keeping up the good fight, keeping people connected, and managing the forum. Many many thanks.
Please keep me in the loop. Thank you,
Animus.
Any news on when the study will resume?I will ask the POIS Research Team. Thank you, Aladin!
VERY EXCITING POIS RESEARCH NEWS!
"I [Eric] and my family's foundation have decided to fully fund the "dream" [POIS] study!"
https://tinyurl.com/y85suu2p
Well, again Eric, many thanks for what you have done and the positive consequences we are witnessing about it right now. You're a real hero!
VERY EXCITING POIS RESEARCH NEWS!
"I [Eric] and my family's foundation have decided to fully fund the "dream" [POIS] study!"
https://tinyurl.com/y85suu2p
I haven't been here in a while and what a good surprise. Not all heroes wear capes... Thank you Eric, your gesture will be remembered.
Really many thanks for ERIC for his donation , I am sure this will have a great and positive effect overall on the latest NORD research.
I am sure all of the forum members do appreciate this.
THANK YOU
I believe this is this first standardized protocol of climax collecting biomarkers of inflammation before and after climax. We also are capturing brain and peripheral physiological measures to further characterize male orgasm.
I believe this is this first standardized protocol of climax collecting biomarkers of inflammation before and after climax. We also are capturing brain and peripheral physiological measures to further characterize male orgasm.
This is fantastic news. The problem we have now is we have no way to quantify POIS scientifically. If they can find some abnormal biomarkers that are associated with POIS then they will be able to quantify it. Once we can quantify it then we can test various treatments and see their effects on said biomarkers. Of course what biomarkers are abnormal will also give great clues about which treatments should be tested first.
I filled out the research study online questionnaire. It informed me that I qualify but I didn't see an option to click on 'new client' to arrange the telephone call. I only saw an 'existing client' log in option. Is the option to register as a new client still functional?
When it'll start?
I filled out the research study online questionnaire. It informed me that I qualify but I didn't see an option to click on 'new client' to arrange the telephone call. I only saw an 'existing client' log in option. Is the option to register as a new client still functional?When it'll start?
From The POIS Research Team:
“Thanks for bringing this to our attention. The study recruitment is still on hold while we wait on our IRB to finalize their approval for the expanded project that was made possible by the family donation. Once that is completed, we have some small administrative details to work out on getting those funds into an account we can access. In the meantime, however, we do want the website to allow folks to register so we can contact them as soon as we are able to start scheduling – so we will look into what’s happening with the scheduling app.”
Thanks, hurray!
I appreciate your explaining IRB, not everyone knows about it.
From The POIS Research Team:
“Thanks for bringing this to our attention. The study recruitment is still on hold while we wait on our IRB to finalize their approval for the expanded project that was made possible by the family donation. Once that is completed, we have some small administrative details to work out on getting those funds into an account we can access. In the meantime, however, we do want the website to allow folks to register so we can contact them as soon as we are able to start scheduling – so we will look into what’s happening with the scheduling app.”
Drew1312 asked a good question about
2020-2021 POIS Research Study: brain measurement of POISers, so I’m reprinting the POIS Research Team reply below.
“Hi Demo,
There are many ways to measure brain responses. We use electroencephalography, abbreviated EEG. EEG is excellent for monitoring events that happen very quickly in time, whereas fMRI is better for identifying where in the brain events are having an impact. EEG relies on electrical changes, while fMRI relies on changes in blood oxygenation. This means that EEG will pretty much always be better for time and fMRI will pretty much always be better for location. We use EEG because the events surrounding climax are (1) thought to occur very rapidly, and (2) I have a large body of EEG data that is useful/published for comparison.
NP
Dr. Nicole Prause, PhD
Co-investigator
POIS 2020-2021 Research Study”
https://clinicaltrials.gov/
If you look for POIS you won't find anything..
[Scholarly Articles from our 2 POIS Scientific Researchers]
Articles from Dr. Tierney Lorenz (https://scholar.google.com/citations?hl=nl&user=oRm8qGsAAAAJ&view_op=list_works&sortby=pubdate)
Articles from Dr. Nicole Prause (https://scholar.google.com/citations?hl=nl&user=yySl87AAAAAJ&view_op=list_works&sortby=pubdate)
Demo, do we know what it takes in terms of Covid-19 numbers in order for the study to proceed? When the situation improves, are they depending on a green light from any sort of central authority, medical or otherwise?
Clues, it will all be based on Los Angeles city guidelines.Clues, I just heard back from the researchers that adds to my above reply. They are taking into account the situation on the ground in Los Angeles, as well as any guidance they receive from the various groups that provide oversight to the project (e.g., the UNL IRB).
Demo, do we know what it takes in terms of Covid-19 numbers in order for the study to proceed? When the situation improves, are they depending on a green light from any sort of central authority, medical or otherwise?Clues, it will all be based on Los Angeles city guidelines.Clues, I just heard back from the researchers that adds to my above reply. They are taking into account the situation on the ground in Los Angeles, as well as any guidance they receive from the various groups that provide oversight to the project (e.g., the UNL IRB).
The Institutional Review Board (IRB) is an administrative body established to protect the rights and welfare of human research subjects recruited to participate in research activities conducted under the auspices of the institution with which it is affiliated.
In our case, it’s the UNL (University of Nebraska - Lincoln) IRB
Thanks for the update!:)
From Dr. Tierney Lorenz (POIS Study PI [Principal Investigator]) :
“We are glad to be moving the project forward, although I know the pace is frustratingly slow. (Thank you for your continued patience!)
We are hopeful that this study will garner further clinical interest, but also interest from basic scientists who are researching the physiologic mechanisms of arousal and orgasm. Sometimes the most compelling information about basic physiology comes from rare conditions like POIS. One of my mentors on residency described this kind of work as “tracking down what makes the car rattle so you can learn how to build an engine”. This is part of why our study is mechanistic, rather than intervention oriented (at least at this stage) - the more we can show that understanding POIS will help not only POISers but also, well, everyone, the more likely we will be able to convince larger funders like NIH that it is worth pursuing.
Best -
Dr L “
This was in response to my email thanking the researchers greatly for their longterm commitment to curing POIS!
The NIH invests nearly $39.2 billion annually in medical research!!
Demo
Worth repeating...From Dr. Tierney Lorenz (POIS Study PI [Principal Investigator]) :
“We are glad to be moving the project forward, although I know the pace is frustratingly slow. (Thank you for your continued patience!)
We are hopeful that this study will garner further clinical interest, but also interest from basic scientists who are researching the physiologic mechanisms of arousal and orgasm. Sometimes the most compelling information about basic physiology comes from rare conditions like POIS. One of my mentors on residency described this kind of work as “tracking down what makes the car rattle so you can learn how to build an engine”. This is part of why our study is mechanistic, rather than intervention oriented (at least at this stage) - the more we can show that understanding POIS will help not only POISers but also, well, everyone, the more likely we will be able to convince larger funders like NIH that it is worth pursuing.
Best -
Dr L “
This was in response to my email thanking the researchers greatly for their longterm commitment to curing POIS!
The NIH invests nearly $39.2 billion annually in medical research!!
Demo
Can you give us an update on the research, demo?
Are the interviews being conducted? Are people being tested?
Or is everything on hold until the covid-crisis is solved?
Demo, do we know what it takes in terms of Covid-19 numbers in order for the study to proceed? When the situation improves, are they depending on a green light from any sort of central authority, medical or otherwise?Clues, it will all be based on Los Angeles city guidelines.Clues, I just heard back from the researchers that adds to my above reply. They are taking into account the situation on the ground in Los Angeles, as well as any guidance they receive from the various groups that provide oversight to the project (e.g., the UNL IRB).
Demo,
As always we are closely monitoring the situation in LA, and adhering to guidance from both local health authorities and from UNL. In the meantime, we are making sure the LA lab is properly outfitted to deal with the biological safety considerations that COVID creates (e.g., making sure we have proper protective gear). When we can safely move forward with reopening participant recruitment, we will do so with an initial emphasis on healthy controls so as to minimize the risk to participants with POIS. Please rest assured that we will alert you as soon as we are able to have POIS participants in the lab again.
Thanks for your ongoing patience;
TKL
Muon:
1) Should anal contractions always happen during orgasm?
2) What does it mean if anal contractions are absent during orgasm?
Dr. Nicole Prause via demo's email:
Hi,
1) Contractions are the main way we define orgasm physiologically, but contractions do not need to be present to experience pleasure and have fulfilling sexuality.
2) We don't know. I'm working on it. :)
Nicole Prause, Ph.D.
thanks, Demo!Aladin, personally, I don’t see that happening. There are many other NORD studies of rare disorders...in the same boat as ours :)
I hope there is no risk that the funding might be cut if the crisis continues to rage...
I plan to do a cytokine test as well and will let you know how it goes (an immunologist advised me to do one).We had a discussion about cytokine measurements over here: https://poiscenter.com/forums/index.php?topic=3207.msg37838#msg37838
NEW POIS Interview
From: Dr Nicole Prause, PhD
To: Demografx
Date: December 30, 2020
“Hi Demo!
I talk a bit about the condition, our study, and an extension in this interview about halfway in
Dr Nicole Prause - Advancing Research In Sexual Psychophysiology, Sexual Biotechnology, And Sex-Tech - YouTube
NP”
Dr Nicole Prause, PhD
Co-investigator
POISCenter-funded
POIS Research Study 2020-2021
https://youtu.be/rFiehQLjPpk
NEW POIS Interview
From: Dr Nicole Prause, PhD
To: Demografx
Date: December 30, 2020
“Hi Demo!
I talk a bit about the condition, our study, and an extension in this interview about halfway in
Dr Nicole Prause - Advancing Research In Sexual Psychophysiology, Sexual Biotechnology, And Sex-Tech - YouTube
NP”
Dr Nicole Prause, PhD
Co-investigator
POISCenter-funded
POIS Research Study 2020-2021
https://youtu.be/rFiehQLjPpk
I watched it yesterday. I?m surprised they only got 1 test subject done so far (she states in the video). I know there was a covid delay but I believe this was started in 2018, then was supposed to be recruited in early 2019, then that was delayed for equipment, and then I saw the delay for the extra funding. Do we know how much extra funding was provided for the Dream project or what are the extras being added? From my understanding studies do not have to be a mystery, even if they are investigative/observational studies rather than treatment/interventional studies. Maybe with psychological/behavioral studies that is the norm, but when researchers physically draw blood from patients to look for immune markers, hormones, ect.. no matter what they tell the patient it will not affect the results. That aspect they should fully disclose. So this is very strange to me. Even for the purpose of letting other researchers know what is being tested so maybe they could do different research(if there are any out there). When you go on ClinicalTrials.gov they show everything. Lastly how many patients are being recruited both healthy and POIS?
I honestly didn?t know the study started recruiting at all otherwise I would have advertised it on the facebook page. It was not advertised at all on the facebook page yet. I remember there was a problem with the survey where we were all getting rejected no matter what we entered. And that is worrying if really bad symptom POIS guys cant be included.
For the people who don't wanna watch the whole thing.
At 16:20 she starts talking about it.
https://youtu.be/rFiehQLjPpk
My wife and INice !are gettingreceived the 1st Pfizer Covid vaccinetomorrow. In L.A.
Hope this bodes well for resuming the *Liberos portion of the 2021 POIS Research study in L.A.!
cc: Dr Lorenz
Dr Prause
*Liberos is the West L.A. POIS-testing laboratory headed by Dr Prause
My wife and Iare gettingreceived the 1st Pfizer Covid vaccinetomorrow. In L.A.
Hope this bodes well for resuming the *Liberos portion of the 2021 POIS Research study in L.A.!
What do you mean by the "Liberos portion" of the study? Is there another research organisation taking part?
Nice, congrats on the vaccination!
What do you mean by the "Liberos portion" of the study? Is there another research organisation taking part?
Clues, the POIS physical testing portion (Orgasm measurement, blood work, brain, etc.) is taking place at Liberos, LLC, a laboratory in West L.A. founded by NORD’s POIS co-investigator, Dr. Nicole Prause.
I'm also a bit annoyed the study did not progress at all in 2020.
The study could have been done with mask (FFP2/N95) wearing requirement and it would have been perfectly safe.
At least that's how the covid summer 2020 was in Germany :-(
Suggestion for Dr. Lorenz:
IL-8 in seminal plasma (sIL-8) could be measured to probe for inflammation of the male genital tract.
https://sci-hub.se/https://pubmed.ncbi.nlm.nih.gov/23611586/
Sent.
Is moving [the POIS Research Study laboratory work] to another state an option?
Highly unlikely. Ties to UCLA. I don’t see Dr Prause uprooting her entire LA-based practice.
I feel like Anakin burning on the Mustafar
;D Dear Anakin ;D
Thanks for posting!
...If the [POIS Research] fundraising could be trusted and anonymous. How do you handle donations at the present?...
If the POIS study is going to measure Interferon-gamma then I suggest measurements to be taken =>24h post O as well. Argument:
https://poiscenter.com/forums/index.php?topic=2545.msg40256#msg40256
You may want to send this post to the researchers. Not only for the above argument but also for type IV hypersensitivity behaviour.
If the POIS study is going to measure Interferon-gamma then I suggest measurements to be taken =>24h post O as well. Argument:
https://poiscenter.com/forums/index.php?topic=2545.msg40256#msg40256
You may want to send this post to the researchers. Not only for the above argument but also for type IV hypersensitivity behaviour.
Sent, Muon. Thanks!
Are the researchers aware of Nanna1s extensive "transient immune supression" theory? To me it seems to be the most detailed theory posted on this forum.
Are the researchers aware of Nanna1s extensive "transient immune supression" theory? To me it seems to be the most detailed theory posted on this forum.What is intresting, 2-3 poisers reported recently complit dioposite from this
Are the researchers aware of Nanna1s extensive "transient immune supression" theory? To me it seems to be the most detailed theory posted on this forum.
Mushnikk, which link should I send?
Have you tried any noradrenaline reuptake inhibitor medicines?Are the researchers aware of Nanna1s extensive "transient immune supression" theory? To me it seems to be the most detailed theory posted on this forum.What is intresting, 2-3 poisers reported recently complit dioposite from this
theory, no pois after norephiderphine incrising medication...
Some of them took it as prepack only..
Are the researchers aware of Nanna1s extensive "transient immune supression" theory? To me it seems to be the most detailed theory posted on this forum.
Mushnikk, which link should I send?
He's thinking of this thread : Transiently Induced Immune Deficiency and therapy (https://poiscenter.com/forums/index.php?topic=3151.0), which is a sequel of this one : Ideas on Herpes Induced POIS (https://poiscenter.com/forums/index.php?topic=2683)
Are the researchers aware of Nanna1s extensive "transient immune supression" theory? To me it seems to be the most detailed theory posted on this forum.
Mushnikk, which link should I send?
He's thinking of this thread : Transiently Induced Immune Deficiency and therapy (https://poiscenter.com/forums/index.php?topic=3151.0), which is a sequel of this one : Ideas on Herpes Induced POIS (https://poiscenter.com/forums/index.php?topic=2683)
Yes, that is the one that I meant. Not only the most detailed hypothesis but also thought of by someone with a science background (I believe a Phd in biochemistry).
Does anybody here have any news from the team of researchers who were looking into POIS in LA this year?I qualified for this study and spoke to them about scheduling, but then the pandemic hit and everything went silent. If they are seeing patients again, then I need to reach back out to them.
We get regularly the NORD newsletter here, but any news about the pois research in particular?
I guess the operations have been slowed down because of the corona measures, but i had understood that they started seeing some members for a study.
Does anybody here have any news from the team of researchers who were looking into POIS in LA this year?I qualified for this study and spoke to them about scheduling, but then the pandemic hit and everything went silent. If they are seeing patients again, then I need to reach back out to them
We get regularly the NORD newsletter here, but any news about the pois research in particular?
I guess the operations have been slowed down because of the corona measures, but i had understood that they started seeing some members for a study.
California aims to fully reopen the economy June 15 -
Today’s Los Angeles Times headline
https://tinyurl.com/2mfd2rcw
I sent the above to our POIS Research Group. They were very pleased to receive it.
As we all know, recruiting volunteers for the 2021-2022 POIS Research Study in Los Angeles at the Liberos, LLC laboratory has been put on hold due to COVID-19 restrictions in L.A.
Now we finally can see significant progress!
We’re *slowly* getting back to the 2021-2022 POIS Research Study lab work portion
in Los Angeles - - the City is starting to open up!
We’re *slowly* getting back to the 2021-2022 POIS Research Study lab work portion
in Los Angeles - - the City is starting to open up!
:o
Hi Clues, does your :o mean you’re surprised?
Hi Clues, does your :o mean you’re surprised?
No, just very excited! :)
Since I registered here, I have lost my father-in-law to a stroke a few years back, my mother to ALS two years back and my dad just last September to covid.
Thank you so much for the condolences. It's been brutal the last few years and POIS hasn't helped that's for sure, although I have found a regimen to minimize the effects as best possible. GNC's Mega Men Performance and Vitality vitamin pack helps substantially.
Since I registered here, I have lost my father-in-law to a stroke a few years back, my mother to ALS two years back and my dad just last September to covid.
I’m so very sorry to hear that!!
My condolences, Samir.
News For
POIS Research Study - -
“L.A. County expected to hit COVID-19 herd immunity by end of July”
(https://ca-times.brightspotcdn.com/dims4/default/37946bf/2147483647/strip/true/crop/6000x4000+0+0/resize/840x560!/format/webp/quality/90/?url=https%3A%2F%2Fcalifornia-times-brightspot.s3.amazonaws.com%2F6b%2Ff2%2Fae8679f847e28ee4b33b10c9c391%2Fla-photos-1staff-768021-la-fo-ep-015.FO.jpg) Diners eat inside E.P. restaurant in West Hollywood on Saturday.
https://tinyurl.com/4fdfhdue
Thank you so much for the condolences. It's been brutal the last few years and POIS hasn't helped that's for sure, although I have found a regimen to minimize the effects as best possible. GNC's Mega Men Performance and Vitality vitamin pack helps substantially.
Since I registered here, I have lost my father-in-law to a stroke a few years back, my mother to ALS two years back and my dad just last September to covid.
I’m so very sorry to hear that!!
My condolences, Samir.
emphasis mine to focus topic reply - but it’s not my endorsement - - demo
Good news, Demo :) If we can get enough people vaccinated, we'll finally be able to go back to normal again. Maybe the POIS Research Study will able to start later in the year :)
The dream study getting underway is exciting! Thanks for the breaking news!My pleasure!
Great news! Keep us posted!
Maybe researchers can take this in consideration:I too have OCD, ADHD, Asperger's and I feel like all of those appeared/worsened in same time or at least getting POIS made other things worse
https://jamanetwork.com/journals/jamapediatrics/article-abstract/2775248
I always felt that there is a link between my ADHD and every other sensitivity, including POIS I have.
Thank you, Journey, sent to researchers along with Spartak’s post.There could be something with the groin/genital/hip area such as something with nerves or something immunity reacts to or some structural difference that might be behind POIS as some get POIS-like symptoms from anything that moves/stretches the hip/groin area and it could be sexual activities just activate it the strongest, it could be worth investigating if there are any nerve/muscular/bacterial/bloodvessel/bone/structural imbalances, if it is possible it would be nice to forward this to POIS research team too
Done.Thank you, Journey, sent to researchers along with Spartak’s post.There could be something with the groin/genital/hip area such as something with nerves or something immunity reacts to or some structural difference that might be behind POIS as some get POIS-like symptoms from anything that moves/stretches the hip/groin area and it could be sexual activities just activate it the strongest, it could be worth investigating if there are any nerve/muscular/bacterial/bloodvessel/bone/structural imbalances, if it is possible it would be nice to forward this to POIS research team too
Impressive Amazon reviews:
https://www.amazon.com/GNC-Mega-Men-Multivitamin-Caplets/product-reviews/B00416PMU2?reviewerType=all_reviews
The Institutional Review Board (IRB) is an administrative body established to protect the rights and welfare of human research subjects recruited to participate in research activities conducted under the auspices of the institution with which it is affiliated.
In our case, it’s the UNL (University of Nebraska - Lincoln) IRB
Impressive Amazon reviews:Interesting. I looked at the number one negative review and it talks about how much Niacin is in it--which might explain why it does work so well. But this is actually different than the vitality pack, which sams club just started carrying again at wholesale prices (1/2 of gnc retail prices). Of course, this is after I bought a supply from gnc thinking sams wouldn't carry it again. ::)
https://www.amazon.com/GNC-Mega-Men-Multivitamin-Caplets/product-reviews/B00416PMU2?reviewerType=all_reviews
Can't wait for this to be back on! The only way to figure this thing out for real will be with studies. We can all come up with our own management in the meantime, but it will be nice to know exactly what is going on and have a real treatment for it.POIS 2021-2022 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”
Dr Nicole Prause is our POIS Research Study co-Investigator
Since we are all now getting closer to re-starting the 2021-2022 POIS Research Study (sorry we can’t tell you exactly when due to COVID status in Los Angeles), it might be a good time for those of you who are unfamiliar with it - - to review what it’s all about:
https://poiscenter.com/forums/index.php?topic=3006.0
Since we are all now getting closer to re-starting the 2021-2022 POIS Research Study POISer volunteer tecruiting (sorry we can’t tell you exactly when due to COVID status in Los Angeles), it might be a good time for those of you who are unfamiliar with it - - to review what it’s all about:
https://poiscenter.com/forums/index.php?topic=3006.0
Can't wait for this [2021-2022 POIS Research Study] to be back on! The only way to figure this thing out for real will be with studies. We can all come up with our own management in the meantime, but it will be nice to know exactly what is going on and have a real treatment for it.
Through a crowdfunded grant totaling $31,000, Lorenz and California-based neuroscientist and sex researcher Nicole Prause will study post-orgasmic illness syndrome, or POIS, the rapid onset of flu-like symptoms in men at the conclusion of sex.
"It's a fairly rare condition, and it hasn't gotten much clinical attention," Lorenz said of the disease, which is commonly marked by coughing and sneezing, sore throats and stuffy noses as well as other physical symptoms.
Some men have reported cognitive difficulties such as a loss of attention span or memory loss.
I don't mean to sound negative or overly critical, but I think it is important to say this: I don't understand how a specialist that is going to carry out a study about POIS syndrome can describe it the way she did here. It is not a condition that affects only men (I'm not the only woman here who has described the same symptoms shared by men), it's not even only about sex for most of us (exercise intolerance, chemical sensitivities...), and I doubt that "coughing and sneezing" is the most common symptom. If I were asked about it, I would rather say it's marked by a generalized inflammatory response (fever, muscle pain and stiff joints, swollen lymph nodes, sore throats, headaches, fatigue, cognitive impairment...).
Hasn't it been like 4 years since this study was trying to take off and still no progress? This thing is probably never coming out in our lifetime.
Hasn't it been like 4 years since this study was trying to take off and still no progress? This thing is probably never coming out in our lifetime.
Has anyone any idea around when will the study restart considering everything?
Has anyone any idea around when will the study restart considering everything?
A message from our POIS research team
We appreciate the patience of the POIS community, particularly given the long wait everyone endured to even get the project funded in the first place. We are still working on the administrative and institutional approvals that are needed to restart after the pandemic. While we’d love to give a definitive answer on when those roadblocks will be cleared, unfortunately, the timeline is out of our hands as we work through multiple different offices and institutions. That said, our commitment to the research has not changed: the project will get done, even if it has been delayed much longer than any of us would have liked.
The commitment from the research team is encouraging and comforting. Thank you for sharing!
Thank you for that, Limejuice!
Your Forum Contributions have been greatly appreciated. Since the Civil War years! (Remember Ulysses Grant and his bloodletting to relieve POIS?) ;D
All the very best,
Demo
(https://i.natgeofe.com/n/c3c3a875-9dc1-428d-bc6c-b1bcbe675c30/Life_of_George_Washington_Deathbed-e1445911206453.jpg)
Have we been scammed? Still waiting for the "administration work getting done"
Relax :-) The world does not revolve around us and Covid made everything worldwide slower than expected.
I think there is a lot that one can fix for his/her own health without doctors or studies, so it's not like we're totally lost.
Relax :-) The world does not revolve around us and Covid made everything worldwide slower than expected.Almost nothing has done much for my primary (puberty/first-orgasm induced) POIS and it seems to worsen with each year, some symptoms can be even on abstinence
I think there is a lot that one can fix for his/her own health without doctors or studies, so it's not like we're totally lost.
But guys since there is such an incredibly long delay I think we should start fundraising for the next study. Why wait at this point? I have a theory that I posted recently and I think we should fund an Investigational Radiologist to run a study for it. I believe that we have a form of pelvic congestion syndrome and that the add blood and blood movement that is triggered by the Orgasm is what is causing POIS a large number of us.Yes, it is possible to prepare many studies at the same time so why not? More studies means better understanding of POIS+data to show doctors/sceptics/other people
you think it is okay that some POISers have it so bad that they risk losing many things in life and might have permanent psychological issues from it just because this far the medical estabhlishment has acted avoidant about POIS and similar conditions?
It doesn't matter how much I exercise/eat/supplement - even a single nocturnal emission on my 8-month streak would make it hard to focus/think/memorize for days and give this tight foggy feeling in my headyou think it is okay that some POISers have it so bad that they risk losing many things in life and might have permanent psychological issues from it just because this far the medical estabhlishment has acted avoidant about POIS and similar conditions?
Sorry! With the "Relax" i was just talking about the claim that it is a scam. I am NOT saying "Relax, POIS is no big issue for you"
I'm not browsing Reddit much but I see you also post a lot there..=> To be honest I'm quite worried about you but don't really know how to help.
Did you try seeing a doctor for your symptoms, but not mentioning orgasm/masturbation/etc? (you mentioned having general health issues)
How is your diet, what are you eating? Are there any things you might be over-eating or under-eating?
Are there any regular supplements / vitamins you take?
Are you getting regular movement outside, e.g. taking walks?
It would still be interesting to hear the answer to those questions, maybe someone has ideas or comments to it.Immunity can react to semen/prostate fluids/pathogens in them/certain neurochemicals that are released during orgasm/ejaculating the most BUT CAN ALSO BE RELEASED OTHER TIMES - e.g. there is substance x that releases a lot during ejaculation thus it being the strongest POIS trigger but it may be released by something else too in smaller amounts e.g. certain foods or semen production alone can make slight activation of it without any sexual stimulation thus for some symptoms emerging milder on abstinence or from other triggers
I've seen things on the forum that were really surprising to me. One high profile member had a vegan diet (-> high risk for definciences IMHO) but switched away from it and says he is cured (but through something else, not through the diet switch. but who knows what side effect the diet switch had?)
At least two members wrote they can't handle B complex (but apparantely never tried different B complex or leaving our certain B vitamins).
Those kind of things probably add up over the years and lead to issues. (Just my 5 cent).
And if even long abstinence does not help... then... maybe the issue is not only orgasms but general health problems. Orgasm is just one trigger.
That's why it would be interesting to know what doctors say to your case.
I can also move the discussion to your personal thread (https://poiscenter.com/forums/index.php?topic=3632.0) then we don't need to be off topic here.
You spend a lot of time posting on reddit, might as well spend some time for this :-)
Journey, you doing a great yob on reddit, you atracted big amountThanks, it is motivating to see that my efforts have results
of poiser in only 1 year. You saving lives!
So wish me luck I will be faster as Nicole Prause :)
…we are all here to help one each other…
I have a feeling the research progress including this prestige step is going to increase exponentially.
Dr Prause’s commitment to POIS is a godsend for us. Her passion and expertise give us the best chance of success.
From Dr. Tierney Lorenz (POIS Study PI [Principal Investigator]) :
“We are glad to be moving the project forward, although I know the pace is frustratingly slow. (Thank you for your continued patience!)
We are hopeful that this study will garner further clinical interest, but also interest from basic scientists who are researching the physiologic mechanisms of arousal and orgasm. Sometimes the most compelling information about basic physiology comes from rare conditions like POIS. One of my mentors on residency described this kind of work as “tracking down what makes the car rattle so you can learn how to build an engine”. This is part of why our study is mechanistic, rather than intervention oriented (at least at this stage) - the more we can show that understanding POIS will help not only POISers but also, well, everyone, the more likely we will be able to convince larger funders like ~ ~ NIH ~ ~ that [POIS] is worth pursuing.
Best -
Dr Lorenz”
Dr Lorenz is the PI (Primary Investigator) for the NORD 2022 POIS Research Study
This was in response to my email thanking the researchers greatly for their longterm commitment to curing POIS!
The ~ ~ NIH ~ ~ (National Institutes of Health) invests nearly
*** $39.2 billion annually ***
in medical research!!
Demo
'Each seed planted can bare a bountiful harvest' and our research team is planting acres of seeds. Harvests also don't grow overnight...
It is not a condition that affects only men (I'm not the only woman here who has described the same symptoms shared by men), it's not even only about sex for most of us (exercise intolerance, chemical sensitivities...), and I doubt that "coughing and sneezing" is the most common symptom. If I were asked about it, I would rather say it's marked by a generalized inflammatory response (fever, muscle pain and stiff joints, swollen lymph nodes, sore throats, headaches, fatigue, cognitive impairment...).
Does anyone have an update on this?
… if this [POIS 2022] study ever happens…
Does anyone have an update on this [2022 POIS Study] ?
From Dr. Tierney Lorenz (our 2022 POIS Study PI [Principal Investigator)]
“We are glad to be moving the project forward, although I know the pace is frustratingly slow. (Thank you for your continued patience!)
We are hopeful that this study will garner further clinical interest, but also interest from basic scientists who are researching the physiologic mechanisms of arousal and orgasm. Sometimes the most compelling information about basic physiology comes from rare conditions like POIS. One of my mentors on residency described this kind of work as “tracking down what makes the car rattle so you can learn how to build an engine”. This is part of why our study is mechanistic, rather than intervention oriented (at least at this stage) - the more we can show that understanding POIS will help not only POISers but also, well, everyone, the more likely we will be able to convince larger funders like ~ ~ NIH ~ ~ that [POIS] is worth pursuing.
Best -
Dr Lorenz”
Dr Lorenz is the PI (Primary Investigator) for the NORD 2022 POIS Research Study
This was in response to my email thanking the researchers greatly for their longterm commitment to curing POIS!
The ~ ~ NIH ~ ~ (National Institutes of Health) invests nearly
*** $39.2 billion annually ***
in medical research!!
Demo
Does anyone have an update on
[the 2022 POIS Research Study]?
I’ve sent [both the 2022 POIS researchers] this question directly [disregarding demografx’s status reports to the forum]
https://twitter.com/Orgasmicillness/status/1508790526904000512?s=20&t=FaxiSFWFNW64xja5x3zeGA
I think Muon is not the only person here who has expressed mistrust in the way the research process is being conducted and in the possibility of obtaining any positive result from this study. And I'm glad to see the numbers are growing. It wasn't enough to let the money go to a study conducted by a psychologist, now the process has to be obscure and confidential too. As far as I know, the funders are the people here, not only the moderators, so, actually, the funders have very little information as to how the process is going and what exactly they are waiting for. All we get is flashy posts about NORD news and podcasts.
But of course, the answer to the very legitimate demand for transparency is to try and publicly shame a forum member. How nice and democratic.
I'm glad I wasn't here when the funding was happening, as I would have donated and would now be deeply regretting having contributed to this particular study. Let's hope we can at least express our opinions here without being censored, right? Since forum members who are literally calling us neurotic and anxious and saying that all we need to do is visit a psychiatrist and read poetry are perfectly allowed to express their wonderful opinions of all of us.
Personally, I can't be more disappointed in this forum, it isn't physically possible. And yes, great things have been done, I'm very grateful to many people here for their ideas and support, I think and it's wonderful that this place exists. But that's not what I'm talking about. Just wanted to state it.
We have to be resilient and have to be patient. And the meantime, try to find at least some personal method to lower your symptoms and mitigate the negative effects of POIS in your life. In other words, brace yourself and be ready for a rather long wait before modern medical science brings you a solution.
We have to be resilient and have to be patient. In the meantime, try to find at least some personal method to lower your symptoms and mitigate the negative effects of POIS in your life. In other words, brace yourself and be ready for a rather long wait before modern medical science brings you a solution.
This.
Huge improvement is possible, there is a lot of examples in the forum.
Thanks, Demo and Quantum, for the detailed replies!
As far as the research itself goes, I understand the time and effort it takes to complete all the process and bureaucracy that makes a scientific study possible, especially one in the field of medicine, where everything is so controlled and exaggeratedly regulated. Since I didn't donate for this, because I wasn't here back then anyway, it's not like I have any say in the matter (and it seems that none of the funders do), but I just wanted to make clear that it's not the delay that I'm complaining about. Plus, I also think it's nice that the study progressed towards a coordination between NORD and UCLA, as I agree that it gives more visibility to this project and to POIS in general.
There is, however, one thing that does irk me about the way Dr. Prause replied in Twitter. She said something to the extent of "we are in constant contact with the funders regarding progress", and it doesn't seem like that is exactly the case. If there are confidentiality issues and the researchers don't want to (or can't) give us information regarding what stage of the process they're exactly in, I don't find her reply reasonable or truthful. If, on the other hand, the mods here have more information than we do, I suppose there are reasons for this. Anyway, I don't really care much about this study as I don't believe it will solve anything apart from helping us have more visibility in the medical community (sorry, I hope I'm wrong but I'm just not optimistic at all in this regard).
But my real concern is, will this increased visibility be good or bad for us? With a disease like POIS, that is constantly belittled as a psychological or psychiatric problem by doctors and patients alike, what will happen if nothing at all is found in a study like this? Have you thought of the implications of this for the future of POIS research? If a psychologist and a neuroscientist (because that's exactly what our researchers are, and yes, I very much doubt the work of NORD in choosing them for a study on POIS) find nothing physically wrong in patients with POIS, not for the lack of a physical issue but for a lack of funding to perform a broad enough investigation, we're done for. Doctors are dismissive enough of us already without researchers with authority telling them we're people with a psychosomatic illness.
Again, I hope this won't be the case, and I will be immensely happy, same as probably everybody else here, if some clue is found. But I personally wanted to share my opinion that the outcome might be worse than most people are realizing. Do you want to know what happened to me a week ago?
I visited a doctor for the first time in years and talked to him about POIS. He doubted that it was a disease that existed and told me I was making things up until I showed him about the NORD and the study that is currently underway. As soon as he looked up the researchers, he smiled and told me that there must be a reason why a prestigious organization like NORD, that clearly knew what is was doing, had chosen a psychologist for our study. He wrote me a referral for a psychiatrist and that was it. Laughing in my face, basically.
Do I think that these doctors are not capable of conducting the study? No, it's not that. They might as well greatly help us by making huge progress, we never know, and I hope that is the case; I don't doubt their capabilities, I do wonder why they were chosen. But this is the reality of what is happening, and what will happen if, for example, they conclude that nothing is wrong with us and the NORD decides to remove POIS from the list of rare diseases, thinking it's psychological, psychosomatic, or psychiatric, because professionals with authority in those fields said so?
I'm very, very worried about the future if this study goes wrong. That's all I'm saying, and I think it's a valid concern and that the situation is very delicate. But I also understand that nothing can be done now, and that all we can do is wait. Thanks for listening anyway.
Demo , for years, has done everything in his power and used all of his (excellent) PR abilities to extract information from NORD, and every little bit he gets, he shares it on the forum.
Demo , for years, has done everything in his power and used all of his (excellent) PR abilities to extract information from NORD, and every little bit he gets, he shares it on the forum.
Quantum, thank you! I’m so happy that someone here appreciates my efforts over the last 15 years!
;D ;D ;D
What we, the millions of people with POIS, need is a consolidated effort from all of us to make something happen. This meager research effort that NORD is undertaking is cute and all, but they may not outpace the heat death of the universe. Even if they manage to, the size of the study may result in next to no results. I read they have what? Like $32k worth of funding? That's nothing. Most of these people are working as volunteers.
There are enough of us that if we could come together and focus on generating crowd sourced funding for a real study that moves fast and attracts serious research, we could make massive leaps forward. Maybe even multiple studies.
I agree with what you said about the need for more funding and research efforts, but I don't believe at all that there are millions of POIS sufferers in the world. Where did you get that idea from?
We have a very small number of people here in this forum
Does that sound like POIS? To me, it sounds like people with generic health issues that are fatigued after sex, having issues because of a million possible reasons, and looking for answers online.
I only see a few dozen people (maybe more, I've never actually counted them, but in any case, a small number) who are consistently participating and who report a medical history and symptoms that are clearly what we all share and call POIS.
There have to be many more POIS sufferers in the world than the ones who have found this forum, that's for sure, but how do we reach them? It's very likely that they don't even know there's a name for their disease.
What we, the millions of people with POIS, need is a consolidated effort from all of us to make something happen. This meager research effort that NORD is undertaking is cute and all, but they may not outpace the heat death of the universe. Even if they manage to, the size of the study may result in next to no results. I read they have what? Like $32k worth of funding? That's nothing. Most of these people are working as volunteers.
There are enough of us that if we could come together and focus on generating crowd sourced funding for a real study that moves fast and attracts serious research, we could make massive leaps forward. Maybe even multiple studies.
Like I said there are millions of people, that if we all only donated $1 dollar we'd have a massive study or even series of studies all under way ASAP. Now imagine donating 5, 10, or even 20 dollars. Donating a single lunch and coffee's worth towards the thing that can change our lives. We all have the power to do this and we've already shown that by pooling our collective knowledge and research we can make strides on treatment for ourselves alone. This NORD study is happening because of us, it's just not enough, we need more than this. Imagine 5 studies all actively turning out more insight with millions of dollars pushing it forward.
We need a new or at least more engaging website that filters information better, grabs attention, and helps the members of our community engage better. Helps them catalog their experiences and information in a readily accessible and easily sharable way. I have spare time and am a software developer by trade with a few friends that are looking for a hobby project. Maybe I could prototype something? That could serve as a nexus to snowball a social movement bringing more people in, start a real funding campaign, and get progress moving at a real measurable pace that we can count on. That we can put our hope into. Look at how fast the world responded to covid. Effective vaccine's in a years time and full breakdown of the virus's capabilities and mutation tracking at unprecedented levels. The power is out there to get this solved, we just need to harness a fraction of it by working together instead of being lazy and hoping someone else will do it for us. It really is just us that'll make this happen.
From Dr. Tierney Lorenz (our 2022 POIS Study PI [Principal Investigator)]
“We are glad to be moving the project forward, although I know the pace is frustratingly slow. (Thank you for your continued patience!)
We are hopeful that this study will garner further clinical interest, but also interest from basic scientists who are researching the physiologic mechanisms of arousal and orgasm. Sometimes the most compelling information about basic physiology comes from rare conditions like POIS. One of my mentors on residency described this kind of work as “tracking down what makes the car rattle so you can learn how to build an engine”. This is part of why our study is mechanistic, rather than intervention oriented (at least at this stage) - the more we can show that understanding POIS will help not only POISers but also, well, everyone, the more likely we will be able to convince larger funders like ~ ~ NIH ~ ~ that [POIS] is worth pursuing.
Best -
Dr Lorenz”
Dr Lorenz is the PI (Primary Investigator) for the NORD 2022 POIS Research Study
This was in response to my email thanking the researchers greatly for their longterm commitment to curing POIS!
The ~ ~ NIH ~ ~ (National Institutes of Health) invests nearly
*** $39.2 billion annually ***
in medical research!!
Demo
What we, the millions of people with POIS, need is a consolidated effort from all of us to make something happen. This meager research effort that NORD is undertaking is cute and all, but they may not outpace the heat death of the universe. Even if they manage to, the size of the study may result in next to no results. I read they have what? Like $32k worth of funding? That's nothing. Most of these people are working as volunteers.
There are enough of us that if we could come together and focus on generating crowd sourced funding for a real study that moves fast and attracts serious research, we could make massive leaps forward. Maybe even multiple studies.
Like I said there are millions of people, that if we all only donated $1 dollar we'd have a massive study or even series of studies all under way ASAP. Now imagine donating 5, 10, or even 20 dollars. Donating a single lunch and coffee's worth towards the thing that can change our lives. We all have the power to do this and we've already shown that by pooling our collective knowledge and research we can make strides on treatment for ourselves alone. This NORD study is happening because of us, it's just not enough, we need more than this. Imagine 5 studies all actively turning out more insight with millions of dollars pushing it forward.
We need a new or at least more engaging website that filters information better, grabs attention, and helps the members of our community engage better. Helps them catalog their experiences and information in a readily accessible and easily sharable way. I have spare time and am a software developer by trade with a few friends that are looking for a hobby project. Maybe I could prototype something? That could serve as a nexus to snowball a social movement bringing more people in, start a real funding campaign, and get progress moving at a real measurable pace that we can count on. That we can put our hope into. Look at how fast the world responded to covid. Effective vaccine's in a years time and full breakdown of the virus's capabilities and mutation tracking at unprecedented levels. The power is out there to get this solved, we just need to harness a fraction of it by working together instead of being lazy and hoping someone else will do it for us. It really is just us that'll make this happen.
Well, that is not very kind to express that much ungratefulness. I hope you will show a more cooperative spirit in your future POIS website and POIS study, that would help.
I have been saying here to finally upgrade the forum as it looks like some ancient suitcase from the 1940s and may repulse many new-comers but POISers here are lazy or something and no one ever puts any concentrated effort to make meaningful organized changes as you said
What we…with POIS, need…[is NOT some] meager research effort that NORD is undertaking…
Hi Slight,
Sorry to read you come here essentially to express how much you are not satisfied…
…the forum…looks like some ancient suitcase from the 1940s…
Well, that is not very kind to express that much ungratefulness…
I have been saying here to finally upgrade the forum as it looks like some ancient suitcase from the 1940s and may repulse many new-comers but POISers here are lazy or something and no one ever puts any concentrated effort to make meaningful organized changes as you said
I am sure sr/nofap groups host hundreds of thousands of POISers
We got like 300-400 new users to /r/POIS from /r/nofap and /r/semenretention by many info spreading operations and in one day we got 100 POISers
However, once my post got around 30 upvotes the /r/nofap mods deleted it when it was growing more popular
…I read they [NORD’s 2022 POIS Research Study] have what? Like $32k worth of funding?
That's nothing.
Hi Slight,
Sorry to read…….
1. Read this: https://poiscenter.com/forums/index.php?topic=3781.msg40119#msg40119 (https://poiscenter.com/forums/index.php?topic=3781.msg40119#msg40119). You will see all that has been done and also, you will read that our POIS Study has now far more than the initial 32K of funding - an anonymous, generous donor from a family foundation has enhanced the NORD grant so that the research team added all the tests they have dreamed of adding to the upcoming 2022 POIS study. So, once the pandemic will lift and the study will be allowed to begin, we will have a great, great study going on, more in dept than originally planned. This had been announced in this very research thread you are posting in, more than a year ago ( https://poiscenter.com/forums/index.php?topic=3006.msg40175;topicseen#msg40175 (https://poiscenter.com/forums/index.php?topic=3006.msg40175;topicseen#msg40175) ). Clearly, you missed that great news, even if this thread is clearly titled "POIS 2021-2022 NORD RESEARCH STUDY".
Quantum, i wanted to add this below to your excellent overview above!
Demo!
VERY EXCITING 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
!
VERY EXCITING 2022 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
Amy update about the study? Will it continue in 5 years or so?Hi Drew, see at https://poiscenter.com/forums/index.php?topic=3006.msg44252#msg44252
Amy update about the study? Will it continue in 5 years or so?Hi Drew, see at https://poiscenter.com/forums/index.php?topic=3006.msg44252#msg44252
(https://liberoscenter.com/wp-content/uploads/2015/04/DSC_1260.jpg)
I had a very pleasant meeting this morning with Dr. Nicole Prause,
POISCenter-funded 2022 NORD Study’s POIS researcher/co-Investigator
https://poiscenter.com/forums/index.php?topic=3006.0
As most of you know, our 2022 POIS Study lab work, directed by Dr Prause, has now been officially approved to be conducted by UCLA (University of California, Los Angeles).
*****With UCLA now as the POIS Study lab researcher, our study has much more prestige!
As Dr Prause indicates: “Two universities
[UCLA and UN-L (University of Nebraska - Lincoln)] make the NORD [POIS] study sound like a powerhouse. :)” *****
I visited her POIS laboratory, which was very impressive, especially the computer systems. I even saw that the ejaculate-sample bottles had already arived for the POIS Study!
https://www.liberoscenter.com/
(http://cb3.unl.edu/wp-content/uploads/2018/08/Lorenz_cropped.jpg)
Dr. Tierney Lorenz,
our PI (Primary
POIS Investigator)
Amazing that you met with her!
[Dr. Nicole Prause, 2022 POIS Study researcher] Thank you for leading the research and organizing everything!
Can you share your first impressions on meeting her? Do you think she's the right fit for our study?
!
VERY EXCITING 2022 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
Well, i personaly think that
all this yob wich is done from some old mebers is incredible, beacuse we
are so "rare" and small comunity.
It would be wery hard to replicate all this
even in todays times.
So a big respect for all that
you all together done so far.
After reading Demo's reply about Dr Prause I can't help but think that in many ways the long delays in our self-sponsored research has been a blessing in complete disguise. After all how could an extended multi-year delay be beneficial?
Well, as Demo said, to find a researcher who's a complete fit A to Z is extremely difficult and well worth the wait as a lesser study could simply be a waste of money, energy, and lead us back to square one. In addition, one of our very generous friends Eric (above) and his family has recently offered to fund a 'dream study' requiring much more resources, ultimately giving us all the best chance to know as much as possible about POIS - that would not have occurred if our study was already done and over with. Also, our leadership team are all much wiser about the complicated and intricate process of medical research having gone through a study iteration that failed, and can make more informed decisions regarding our dream study (along-side Eric). Lastly, all of us members now have more realistic expectations and a better understanding of what is about to happen. Volunteer members for the study can also be better prepared (which is around the corner!)!
I think we are actually lucky in our research timing in that we've worked hard, never gave up, and were in the right place at the right time as a result of preparation, hard work, and overcoming obstacles. Us POISers create our own luck.
(https://liberoscenter.com/wp-content/uploads/2015/04/DSC_1260.jpg)
I had a very pleasant meeting this morning with Dr. Nicole Prause,
POISCenter-funded 2022 NORD Study’s POIS researcher/co-Investigator
https://poiscenter.com/forums/index.php?topic=3006.0
As most of you know, our 2022 POIS Study lab work, directed by Dr Prause, has now been officially approved to be conducted by UCLA (University of California, Los Angeles).
*****With UCLA now as the POIS Study lab researcher, our study has much more prestige!
As Dr Prause indicates: “Two universities
[UCLA and UN-L (University of Nebraska - Lincoln)] make the NORD [POIS] study sound like a powerhouse. :)” *****
I visited her POIS laboratory, which was very impressive, especially the computer systems. I even saw that the ejaculate-sample bottles had already arived for the POIS Study!
https://www.liberoscenter.com/
(http://cb3.unl.edu/wp-content/uploads/2018/08/Lorenz_cropped.jpg)
Dr. Tierney Lorenz,
our PI (Primary
POIS Investigator)
Wow, that must have been a really interesting visit! Thanks for keeping us all up to date on events, Demo.
!
VERY EXCITING 2022 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
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.
Nice! I actually just gave a two hour interview about orgasm data yesterday (it does not release until September 2022).
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.
Nice! I actually just gave a two hour interview about orgasm data yesterday (it does not release until September 2022).
(https://liberoscenter.com/wp-content/uploads/2015/04/DSC_1260.jpg)
Dr. Nicole Prause,
POISCenter-funded 2022 NORD Study’s POIS researcher/co-Investigator
Well, looking forward to it in September!
Hi guys, So when is this study finally starting? We lost so much valuable time on the 1st study and now many years because of the pandemic.Hi Disaster,
I want to point out that it is supposed to be a collab between the doctor in California and the Dr. in Texas. Could they have not just shifted the lab to Texas where Texas is much more lenient about COVID restrictions?
I want to point out that it is supposed to be a collab between the doctor in California and the Dr. in Texas. Could they have not just shifted the lab to Texas where Texas is much more lenient about COVID restrictions?
There is no “Dr in Texas”.
I want to point out that it is supposed to be a collab between the doctor in California and the Dr. in Texas. Could they have not just shifted the lab to Texas where Texas is much more lenient about COVID restrictions?
There is no “Dr in Texas”.
So Dr. Tierney Lorenz is not part of the study anymore? Wasn?t she in Texas when they first were chosen for the study? I see she is in Nebraska now, so then Nebraska and not Texas. Or am I confused and she was never part of the study? ???
The question still stands, not do the study in Nebraska where there are probably a lot less covid restrictions?
The question still stands, not do the study in Nebraska where there are probably a lot less covid restrictions?
It’s totally irrelevant.
There are no covid barriers to study POIS volunteers in Los Angeles. And it is totally impractical to
move 1,500 miles away (!) the POIS laboratory - - with all its equipment, employees, longstanding tenure, from Los Angeles to…Nebraska!!
And we have the added prestige (to Nebraska) of lab work being initially conducted at UCLA! (University of California Los Angeles). And, as Dr. Prause indicates, 2 universities studying POIS makes the study sound like a powerhouse!
And Dr Lorenz’ co-investigator, Dr Prause, in Los Angeles, was selected because she is the best qualified teammate to have for the POIS Study.
We are working with the top researchers in the world, and we are lucky that they want to work with us. It doesn't need to be said - they dedicate they're life to this work and know what is best for our case. It would behoove us to listen, take their adivce, and learn from the best - not pretend to know more than them, continuously challenge/annoy them, and push them away from us.
I only speak for myself (and not the community), but as a POISer I am stubborn, hard to deal with, terrible at relationships, and communication. I feel blessed that these experts want to work with me/us, especially after the last failed research attempt due to POIS instability.
!
VERY EXCITING 2022 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
We are working with the top researchers in the world, and we are lucky that they want to work with us. It doesn't need to be said - they dedicate they're life to this work and know what is best for our case. It would behoove us to listen, take their adivce, and learn from the best - not pretend to know more than them, continuously challenge/annoy them, and push them away from us.
I only speak for myself (and not the community), but as a POISer I am stubborn, hard to deal with, terrible at relationships, and communication. I feel blessed that these experts want to work with us, especially after the last failed research attempt due to POIS instability, which they are well aware of.
[Emphasis mine,
Demo]
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.
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
Will they be measuring blood pressure pre and post Orgasm? This parameter seems to be overlooked.
Understandable, perhaps a target for future studies.
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!
!
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
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.
(https://liberoscenter.com/wp-content/uploads/2015/04/DSC_1260.jpg)
Dr. Nicole Prause, NORD Co-Investigator,
2023 POIS Research Study
(https://pbs.twimg.com/profile_images/1565755424455925761/C0l-0Vh-_400x400.jpg)
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”
Question - has this drug been used by other POISers (or a drug of similar class)? A forum search didn't find anything.
Question - has this drug been used by other POISers (or a drug of similar class)? A forum search didn't find anything.
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
(https://liberoscenter.com/wp-content/uploads/2015/04/DSC_1260.jpg)
“Flibanserin For Post-Orgasmic Illness Syndrome”
Has this been published anywhere?
(https://liberoscenter.com/wp-content/uploads/2015/04/DSC_1260.jpg)
“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
(https://els-jbs-prod-cdn.jbs.elsevierhealth.com/cms/asset/atypon:cms:attachment:img:d55e6:rev:1593736005333-2309:pii:S1743609519X00120/cover.tif.jpg)
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
Great, thanks!
The new POIS paper will be published in The Journal of Sexual Medicine
(https://els-jbs-prod-cdn.jbs.elsevierhealth.com/cms/asset/atypon:cms:attachment:img:d55e6:rev:1593736005333-2309:pii:S1743609519X00120/cover.tif.jpg)
An official journal of the International Society
for Sexual Medicine (ISSM)
For more info on ISSM:
https://www.issm.info/members/join-us
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!
Anything on the [2023 POIS Research] study?
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
This forum is very new to me, but pois is not, unfortunately. I suppose I am trying to find out the availability of the research study and if it has space for someone that has time to commit to such a service. Secondly, I am still learning about pois, treatments, and experiences. Thank you. - R
Thank you, Demografx. I am actually speaking of the study being conducted at The University of Nebraska / Lincoln.
Im pretty excited for the study and hope, i can be part of it, even as a german!
Thank you Demo and all the doctors for this chance,
also all the helpful people in this community,
God bless!
(https://miro.medium.com/max/1400/1*b2wnLQyZeI4y0dcLByavug.png)The doctors/researchers should make a POIS-specific video/article/something
Myths About Porn Addiction: With Dr. Nicole Prause, Ph.D.
Dr. Nicole Prause is the co-Investigator of the POISCenter-funded 2023 NORD Study on POIS
(https://www.sexandpsychology.com/wp-content/uploads/img-165-scaled.jpg)
I sat down to have an interview with Dr. Prause about the myth of "porn addiction" and how it became so widespread. We cover what the science really says, addiction, and the history of anti-porn.
Joe Duncan
Mar 4, 2023
https://tinyurl.com/nh932chx
The time stamp (1:14:45) is where Dr. Prause talks about the 2023 POIS study!
(http://cb3.unl.edu/wp-content/uploads/2018/08/Lorenz_cropped.jpg)
Dr. Tierney K. Lorenz is the Primary Investigator of the POISCenter-funded 2023 NORD Study on POIS
(https://miro.medium.com/max/1400/1*b2wnLQyZeI4y0dcLByavug.png)
Myths About Porn Addiction: With Dr. Nicole Prause, Ph.D.
Dr. Nicole Prause is the co-Investigator of the POISCenter-funded 2023 NORD Study on POIS
(https://www.sexandpsychology.com/wp-content/uploads/img-165-scaled.jpg)
I sat down to have an interview with Dr. Prause about the myth of "porn addiction" and how it became so widespread. We cover what the science really says, addiction, and the history of anti-porn.
Joe Duncan
Mar 4, 2023
https://tinyurl.com/nh932chx
The time stamp (1:14:45) is where Dr. Prause talks about the 2023 POIS study!
(http://cb3.unl.edu/wp-content/uploads/2018/08/Lorenz_cropped.jpg)
Dr. Tierney K. Lorenz is the Primary Investigator of the POISCenter-funded 2023 NORD Study on POIS
The doctors/researchers should make a POIS-specific video/article/something
The doctors/researchers should make a POIS-specific video/article/something
Hi Journey, upon completion of the study the researchers are required by NORD to craft an article to be submitted for publication (including their method, procedure, results, and final thoughts). Would that have the POIS specific information your wanting?
That is good however a general type of social media posts focusing on POIS generally are also good and the more of them the higher the odds an unaware POISer finds it and more people know of POIS and can tell someone it's a thing if they ever meet someone talking of nofap benefits or post-orgasm symptomsThe doctors/researchers should make a POIS-specific video/article/something
Hi Journey, upon completion of the study the researchers are required by NORD to craft an article to be submitted for publication (including their method, procedure, results, and final thoughts). Would that have the POIS specific information your wanting?
I think we just have to be patient.
There is a lot of improvements (for most people?) that can be done by lifestyle/diet/supplements, so waiting for the research is not a magic bullet.
(And I know you had improvements already with certain changes, so that's a great win!)
Also: The research might only bring results for certain types of POIS which might not be yours...
I think we just have to be patient.Research is needed to boost acknowledgement/knowledge on which area to focus on to cure POIS as many doctors/people are sceptical of it due to not enough research/popularity which can make it harder for a POISer to be understood
There is a lot of improvements (for most people?) that can be done by lifestyle/diet/supplements, so waiting for the research is not a magic bullet.
(And I know you had improvements already with certain changes, so that's a great win!)
Also: The research might only bring results for certain types of POIS which might not be yours...
The [Flibanserin] case report has been published in [scientific] literature. [see Muon link at page bottom].
Flibanserin for Post-Orgasmic Illness Syndrome: A Case Report (https://academic.oup.com/jsm/article-abstract/20/Supplement_1/qdad060.222/7164839)
Paper specific discussion thread.
…Conclusion: we’re very fortunate!
(https://pctu.edu.vn/vnt_upload/library/06_2020/jama-journal.jpg)
(https://avatars.sched.co/a/17/10032932/avatar.jpg?063)
“…659 clinical trials for rare diseases [are] registered at ClinicalTrials.gov…[representing] close to 7000 rare disorders…
https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2763223
Therefore, I estimate only 10% of all rare
disorders (like POIS) are scientifically studied.
Conclusion: we’re very fortunate!
…Conclusion: we’re very fortunate!From the 2023 POIS Research Team:
(https://pctu.edu.vn/vnt_upload/library/06_2020/jama-journal.jpg)
“…659 clinical trials for rare diseases [are] registered at ClinicalTrials.gov…[representing] close to 7000 rare disorders…
https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2763223
Therefore, I estimate only 10% of all rare
disorders (like POIS) are scientifically studied.
Conclusion: we’re very fortunate!
Understandable, perhaps a target for future studies.
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!
I think Muon is not the only person here who has expressed mistrust in the way the research process is being conducted and in the possibility of obtaining any positive result from this study. And I'm glad to see the numbers are growing. It wasn't enough to let the money go to a study conducted by a psychologist, now the process has to be obscure and confidential too. As far as I know, the funders are the people here, not only the moderators, so, actually, the funders have very little information as to how the process is going and what exactly they are waiting for. All we get is flashy posts about NORD news and podcasts.
But of course, the answer to the very legitimate demand for transparency is to try and publicly shame a forum member. How nice and democratic.
I'm glad I wasn't here when the funding was happening, as I would have donated and would now be deeply regretting having contributed to this particular study. Let's hope we can at least express our opinions here without being censored, right? Since forum members who are literally calling us neurotic and anxious and saying that all we need to do is visit a psychiatrist and read poetry are perfectly allowed to express their wonderful opinions of all of us.
Personally, I can't be more disappointed in this forum, it isn't physically possible. And yes, great things have been done, I'm very grateful to many people here for their ideas and support, I think and it's wonderful that this place exists. But that's not what I'm talking about. Just wanted to state it.
I think many members seem to have forgotten that it is NORD , the National Organization for Rare Disorders, that is responsible for the legal and scientific supervision of this study.
Many years ago, it had been chosen that poiscenter would go for a credible organization, in order to end up with a credible scientific study, not a low-level quality study that no researchers and no MD will read. There are many parameters to be considered for real, professional supervision of all the steps in the study: submitting the study projects, choosing the best project, then accepting the study design, revising the ethical aspects of the study, the financial aspect, and so on. You need a fine Board of Supervisors for this, and NORD has it.
When you say that "I think Muon is not the only person here who has expressed mistrust in the way the research process is being conducted and in the possibility of obtaining any positive result from this study", you are clearly expressing that you do not think NORD is a trustworthy organization, and that they cannot supervise correctly a scientific study, and that they may not have chosen a competent research team, and they may not be doing a vigilant follow-up on the study.
Now, I would like to remind everyone that, the way it works, NORD is responsible for what happens with the funds and the study, and the only information the funders will receive are, first, what research team will be awarded the grant, a brief description of the study, and then, the Interim Reports that we receive after some milestones have been attained in the study, once it is started. I think we will receive the article and complete results when they will be published. Apart from this, NORD is not accountable to us, but, however, they do all they can to keep us informed, even if they have much on their plate (helping over 300 rare disorders associations like ours). This supposed right for the "funders" you are referring to, to receive more explanations from NORD, simply does not exist. However, Demo , for years, has done everything in his power and used all of his (excellent) PR abilities to extract information from NORD, and every little bit he gets, he shares it on the forum.
So, this discourse about expressing "mistrust in the way the research process is being conducted" and lack of transparency does not make sense at all, from my point of view. NORD's Medical Advisory Committee is made up of experts who work voluntarily! ( https://rarediseases.org/for-clinicians-and-researchers/research-opportunities/research-grant-program/ (https://rarediseases.org/for-clinicians-and-researchers/research-opportunities/research-grant-program/) ), and NORD has limited staff and still helps over 300 groups like ours.. We should thank them for their generosity, not complaining about not being updated as often as we would like to. Asking for more from NORD staff is just not appropriate, let us just be grateful for all the help we get from them.
Also, still in line with your disappointment about NORD, could you explain, please, what you would suggest as an alternative for a professional and recognized organization to supervise a POIS study that you would organize along with all those who are disappointed with what is going on with the study on poiscenter? You could organize a few Zoom think-tanks with all those who are dissatisfied with NORD tenure and poiscenter. You say they are growing in number and that you are happy with it, so you will get all the help you need for this rather demanding task. For my part, I will be happy to read your detailed strategy and your project plans. Don't forget to take into consideration that you need to have the money to pay the supervising organization in order to do a professional job and lead to a valid research publication. This cannot be done by a group of laypeople, but need highly qualified persons. Of course, It will be quite hard to beat NORD's price, since their Medical Advisory Committee is made of volunteers experts...
I would also like to remind everybody that POIS research is in an embryonic state, at this point in history. For now, just to have a research team being interested in going ahead with a real POIS study is to be valued in itself. We have to start somewhere, and not all researchers are willing to take the risk of finding absolutely nothing! Researchers all think about their career plan and their professional evolution, you know - they do not want to be associated with a project that goes nowhere and have no clue, they want a breakthrough and hope for recognition. So, for now, we should be grateful to have a team willing to really help us and make things move ahead. The other teams wait and see, they want to have some solid evidence, some gained knowledge, before diving in the pool.
And, please, to everyone, I would like you to realize that a first study will not be enough to heal everyone's POIS, be realistic. We may get very good leads about the main types of POIS and what causes them, and possible investigational treatments. Maybe this will be enough for certain members to find major relief for their symptoms. But please, don't set your expectations too high, for a first real POIS study.
I would also like to refer all those who are deeply disappointed to read my account of what has been done so far by poiscenter.com about research: https://poiscenter.com/forums/index.php?topic=3781.msg40119#msg40119 (https://poiscenter.com/forums/index.php?topic=3781.msg40119#msg40119) . This will give you a better perspective and how it really works.
Personally, I cannot recall how many emails I have written, in the last 8 years, to so many research teams and doctors who have written scientific papers about POIS, in order to build connexion and foster new POIS projects. It has sometimes produced interesting results, like the 2019 POIS survey, and in 2021, Dr. Nathan's experiment, and some interactions with a new POIS Panel made of many specialists and doctors.
We all were very disappointed that a troubled subject ( who we don't know the identity) made us lose 3 years because of an undue complaint that ended up in a lengthy investigation, and finally, the cancellation of the Rutgers study. And again, we are all very upset and downhearted by this new delay created by the COVID pandemic, that made us lose another year. at the least. We have to be resilient and have to be patient. And the meantime, try to find at least some personal method to lower your symptoms and mitigate the negative effects of POIS in your life. In other words, brace yourself and be ready for a rather long wait before modern medical science brings you a solution.
Guys the delay on this study is unreal. It was announced May 2019. 1 year before COVID started. It?s fully over 1 year since restrictions have ended. This coming May 2024 will be 5 years and the study still hasn?t started. All we have done is promote these doctors doing the study. We did the same exact thing on the first study and look where that went. If you count that 1st study we have fully gone 1 full decade of study finding without any study results at all. At what point do you stop promoting? 7,8, 10 years with no results? Guys are asking all the time on the FB group and I have no where to send them. I have 809 vetted members now and not a single place to send these guys. I tell them about this study for the last 4.5 years. The communication about this study is very poor and even more poor about the study. It should not be a secret what or how POIS is being studied. If you look at ALL of the NIH list of Clinical Studies there is a clear paper on the exact design of the study and what is being used. Even in a Placebo double blond study there are specific details about the testing and what is being reported and recorded in the studies. The only thing that is hidden is who is getting the placebo and who is not. The only reason I can think of why they wouldn?t what to share this info is scrutiny. But that is not how clinical studies work. I can provide links to studies just like this with every detail of the study listed during recruiting phase if anyone wants to see what I mean. I think 4.5 years is pretty patient. I think our study must not be a priority at this point. NORD doesn?t have a time limit on the studies they approve? Sorry this is just frustrating as prob ably the sickest person on the planet with POIS having to wait a decade with no study even started.ugh
But, there is no money to do with a POIS medication or cure. That's the way it works. You should see all the new, very effective drugs that come out each year for cancer or for diabetes! You sure have heard of the new class of wonder drugs for diabetes, the GLP1, like semaglutide ( Wegovy/Ozempic), and the new Moonjaro, which will be the "new star", detroning Wegovy/Ozempic within a year or so. And it is not all, you also have the iSGLT1, like Forxiga, Invokana and Jardiance,, which are not only very good for diabetes/blood sugar level, but also help for the kidneys and the heart as well, preventing long-term bad effects. Those "miracles" happen because there is much, much profit to do, tens of billions of dollars a year
How much return would there be with a POIS drug or treatment ? Not even 1 million, and surely not billions.
Humans are humans, driven by obvious motivations. Pure, detached, medical research is a "side dish" that may appeal to researchers who would like to see their name associated with a breakthrough.
But, there is no money to do with a POIS medication or cure. That's the way it works. You should see all the new, very effective drugs that come out each year for cancer or for diabetes! You sure have heard of the new class of wonder drugs for diabetes, the GLP1, like semaglutide ( Wegovy/Ozempic), and the new Moonjaro, which will be the "new star", detroning Wegovy/Ozempic within a year or so. And it is not all, you also have the iSGLT1, like Forxiga, Invokana and Jardiance,, which are not only very good for diabetes/blood sugar level, but also help for the kidneys and the heart as well, preventing long-term bad effects. Those "miracles" happen because there is much, much profit to do, tens of billions of dollars a year
How much return would there be with a POIS drug or treatment ? Not even 1 million, and surely not billions.
Humans are humans, driven by obvious motivations. Pure, detached, medical research is a "side dish" that may appeal to researchers who would like to see their name associated with a breakthrough.
Yes, it's unlikely that there will ever be a drug specifically aimed at POIS. However, if research can uncover what causes POIS, then there are thousands of drugs that could potentially be used "off-label" to alleviate or prevent POIS symptoms.
Guys the delay on this study is unreal. It was announced May 2019. 1 year before COVID started. It?s fully over 1 year since restrictions have ended. This coming May 2024 will be 5 years and the study still hasn?t started. All we have done is promote these doctors doing the study. We did the same exact thing on the first study and look where that went. If you count that 1st study we have fully gone 1 full decade of study finding without any study results at all. At what point do you stop promoting? 7,8, 10 years with no results? Guys are asking all the time on the FB group and I have no where to send them. I have 809 vetted members now and not a single place to send these guys. I tell them about this study for the last 4.5 years. The communication about this study is very poor and even more poor about the study. It should not be a secret what or how POIS is being studied. If you look at ALL of the NIH list of Clinical Studies there is a clear paper on the exact design of the study and what is being used. Even in a Placebo double blond study there are specific details about the testing and what is being reported and recorded in the studies. The only thing that is hidden is who is getting the placebo and who is not. The only reason I can think of why they wouldn?t what to share this info is scrutiny. But that is not how clinical studies work. I can provide links to studies just like this with every detail of the study listed during recruiting phase if anyone wants to see what I mean. I think 4.5 years is pretty patient. I think our study must not be a priority at this point. NORD doesn?t have a time limit on the studies they approve? Sorry this is just frustrating as prob ably the sickest person on the planet with POIS having to wait a decade with no study even started.ugh
Guys the delay on this study is unreal. It was announced May 2019. 1 year before COVID started. It?s fully over 1 year since restrictions have ended. This coming May 2024 will be 5 years and the study still hasn?t started. All we have done is promote these doctors doing the study. We did the same exact thing on the first study and look where that went. If you count that 1st study we have fully gone 1 full decade of study finding without any study results at all. At what point do you stop promoting? 7,8, 10 years with no results? Guys are asking all the time on the FB group and I have no where to send them. I have 809 vetted members now and not a single place to send these guys. I tell them about this study for the last 4.5 years. The communication about this study is very poor and even more poor about the study. It should not be a secret what or how POIS is being studied. If you look at ALL of the NIH list of Clinical Studies there is a clear paper on the exact design of the study and what is being used. Even in a Placebo double blond study there are specific details about the testing and what is being reported and recorded in the studies. The only thing that is hidden is who is getting the placebo and who is not. The only reason I can think of why they wouldn?t what to share this info is scrutiny. But that is not how clinical studies work. I can provide links to studies just like this with every detail of the study listed during recruiting phase if anyone wants to see what I mean. I think 4.5 years is pretty patient. I think our study must not be a priority at this point. NORD doesn?t have a time limit on the studies they approve? Sorry this is just frustrating as prob ably the sickest person on the planet with POIS having to wait a decade with no study even started.ugh
You are right, Disaster, the delay is unreal. But, there is no money to do with a POIS medication or cure. That's the way it works. You should see all the new, very effective drugs that come out each year for cancer or for diabetes! You sure have heard of the new class of wonder drugs for diabetes, the GLP1, like semaglutide ( Wegovy/Ozempic), and the new Moonjaro, which will be the "new star", detroning Wegovy/Ozempic within a year or so. And it is not all, you also have the iSGLT1, like Forxiga, Invokana and Jardiance,, which are not only very good for diabetes/blood sugar level, but also help for the kidneys and the heart as well, preventing long-term bad effects. Those "miracles" happen because there is much, much profit to do, tens of billions of dollars a year
How much return would there be with a POIS drug or treatment ? Not even 1 million, and surely not billions.
Humans are humans, driven by obvious motivations. Pure, detached, medical research is a "side dish" that may appeal to researchers who would like to see their name associated with a breakthrough.
The pill may be hard to swallow ( pun intended) for people like us who are stuck with a rare condition.
Have you ever seen the movie "Lorenzo's Oil"? ( https://en.wikipedia.org/wiki/Lorenzo's_Oil (https://en.wikipedia.org/wiki/Lorenzo's_Oil) ) I suggest you watch it, to get some perspective about medical research for rare diseases.
Not sure to understand your point, and where you are heading. You first complained that the delay for the POIS study is unreal, and I explained to you some factors that have been contributing to that delay. Then, now, you try to convince me that solving POIS or any rare disease is not that hard and that it is very attractive for Big Pharma on the financial side. The truckload of rare diseases with no solution and no research does not fit your hypothesis. From my point of view, you just change your position so that you can argue and be in opposition to anything. I am sorry, but I do not take any interest in this kind of discussion.Guys the delay on this study is unreal. It was announced May 2019. 1 year before COVID started. It?s fully over 1 year since restrictions have ended. This coming May 2024 will be 5 years and the study still hasn?t started. All we have done is promote these doctors doing the study. We did the same exact thing on the first study and look where that went. If you count that 1st study we have fully gone 1 full decade of study finding without any study results at all. At what point do you stop promoting? 7,8, 10 years with no results? Guys are asking all the time on the FB group and I have no where to send them. I have 809 vetted members now and not a single place to send these guys. I tell them about this study for the last 4.5 years. The communication about this study is very poor and even more poor about the study. It should not be a secret what or how POIS is being studied. If you look at ALL of the NIH list of Clinical Studies there is a clear paper on the exact design of the study and what is being used. Even in a Placebo double blond study there are specific details about the testing and what is being reported and recorded in the studies. The only thing that is hidden is who is getting the placebo and who is not. The only reason I can think of why they wouldn?t what to share this info is scrutiny. But that is not how clinical studies work. I can provide links to studies just like this with every detail of the study listed during recruiting phase if anyone wants to see what I mean. I think 4.5 years is pretty patient. I think our study must not be a priority at this point. NORD doesn?t have a time limit on the studies they approve? Sorry this is just frustrating as prob ably the sickest person on the planet with POIS having to wait a decade with no study even started.ugh
You are right, Disaster, the delay is unreal. But, there is no money to do with a POIS medication or cure. That's the way it works. You should see all the new, very effective drugs that come out each year for cancer or for diabetes! You sure have heard of the new class of wonder drugs for diabetes, the GLP1, like semaglutide ( Wegovy/Ozempic), and the new Moonjaro, which will be the "new star", detroning Wegovy/Ozempic within a year or so. And it is not all, you also have the iSGLT1, like Forxiga, Invokana and Jardiance,, which are not only very good for diabetes/blood sugar level, but also help for the kidneys and the heart as well, preventing long-term bad effects. Those "miracles" happen because there is much, much profit to do, tens of billions of dollars a year
How much return would there be with a POIS drug or treatment ? Not even 1 million, and surely not billions.
Humans are humans, driven by obvious motivations. Pure, detached, medical research is a "side dish" that may appeal to researchers who would like to see their name associated with a breakthrough.
The pill may be hard to swallow ( pun intended) for people like us who are stuck with a rare condition.
Have you ever seen the movie "Lorenzo's Oil"? ( https://en.wikipedia.org/wiki/Lorenzo's_Oil (https://en.wikipedia.org/wiki/Lorenzo's_Oil) ) I suggest you watch it, to get some perspective about medical research for rare diseases.
Quantum, you may not remember but I have other rare illnesses and undiagnosed issues that lead me into researching, studying knowing about thousands of illnesses many rare like POIS. So with that knowledge I have to humbly disagree. As far as research, studies and treatments for rare disease. I?ll give toy an example so you understand. I have a disease called Familial Mediterranean Fever (FMF), odds are you no one here has heard of it. It is a type Autoinflammatory Disease, odds are no one ever heard of that either. They have only been discovered this century and they involve a genetic mutation. Very few people have it so it is a rare disease. Almost immediately once discovered they found treatments for it, Colchine which is a specific anti-inflammatory medication originally used for Gout. It has been successfully used in FMF. Not everyone responds well to it and in those cases they use specific biologics. When dr. Waldinger, originally thought POIS was an allergy to semen, if he was correct then we could have treated POIS with specific anti-allergy meds. So once we find the cause it might be a surgery or and existing medication that treats it. Not necessary that expensive drug trials need to happen. And it?s not cancer specifically that creates new drugs it?s any terminal condition. For example Cystic Fibrosis is considered a rare disease and they made amazing strides in drug research, just in the last decDe alone new drugs have come out that double some patients expected life span from 30 years to 60 years. What drug makers do to offset the smaller patient population is hike up the prices of the drug, which insurance companies usually pay. I have other rare illnesses besides FMF and each medication I take for each of them cost $500,000 a year each. My insurance only cover 70% of one and 0% of the other. I got a charity to pay for 30% of the one and 100% of the other from the company that make it. so imagine if we needed a medication like those and we have 2,000 of us, that is still $1,000,000,000/year, a Trillion dollars $$$ lol. Trust me that is plenty motivation for any pharma company from the biggest to the smallest. But like i said the key is knowing what the mechanism is and it might turn out we could use existing meds or some surgery or something. So I wouldn?t listen to your friend about cancer only getting research. I know hundreds of other rare illnesses. Also pharma company get special consideration from ?orphan? drugs.
Not sure to understand your point, and where you are heading. You first complained that the delay for the POIS study is unreal, and I explained to you some factors that have been contributing to that delay. Then, now, you try to convince me that solving POIS or any rare disease is not that hard and that it is very attractive for Big Pharma on the financial side. The truckload of rare diseases with no solution and no research does not fit your hypothesis. From my point of view, you just change your position so that you can argue and be in opposition to anything.Guys the delay on this study is unreal. It was announced May 2019. 1 year before COVID started. It?s fully over 1 year since restrictions have ended. This coming May 2024 will be 5 years and the study still hasn?t started. All we have done is promote these doctors doing the study. We did the same exact thing on the first study and look where that went. If you count that 1st study we have fully gone 1 full decade of study finding without any study results at all. At what point do you stop promoting? 7,8, 10 years with no results? Guys are asking all the time on the FB group and I have no where to send them. I have 809 vetted members now and not a single place to send these guys. I tell them about this study for the last 4.5 years. The communication about this study is very poor and even more poor about the study. It should not be a secret what or how POIS is being studied. If you look at ALL of the NIH list of Clinical Studies there is a clear paper on the exact design of the study and what is being used. Even in a Placebo double blond study there are specific details about the testing and what is being reported and recorded in the studies. The only thing that is hidden is who is getting the placebo and who is not. The only reason I can think of why they wouldn?t what to share this info is scrutiny. But that is not how clinical studies work. I can provide links to studies just like this with every detail of the study listed during recruiting phase if anyone wants to see what I mean. I think 4.5 years is pretty patient. I think our study must not be a priority at this point. NORD doesn?t have a time limit on the studies they approve? Sorry this is just frustrating as prob ably the sickest person on the planet with POIS having to wait a decade with no study even started.ugh
You are right, Disaster, the delay is unreal. But, there is no money to do with a POIS medication or cure. That's the way it works. You should see all the new, very effective drugs that come out each year for cancer or for diabetes! You sure have heard of the new class of wonder drugs for diabetes, the GLP1, like semaglutide ( Wegovy/Ozempic), and the new Moonjaro, which will be the "new star", detroning Wegovy/Ozempic within a year or so. And it is not all, you also have the iSGLT1, like Forxiga, Invokana and Jardiance,, which are not only very good for diabetes/blood sugar level, but also help for the kidneys and the heart as well, preventing long-term bad effects. Those "miracles" happen because there is much, much profit to do, tens of billions of dollars a year
How much return would there be with a POIS drug or treatment ? Not even 1 million, and surely not billions.
Humans are humans, driven by obvious motivations. Pure, detached, medical research is a "side dish" that may appeal to researchers who would like to see their name associated with a breakthrough.
The pill may be hard to swallow ( pun intended) for people like us who are stuck with a rare condition.
Have you ever seen the movie "Lorenzo's Oil"? ( https://en.wikipedia.org/wiki/Lorenzo's_Oil (https://en.wikipedia.org/wiki/Lorenzo's_Oil) ) I suggest you watch it, to get some perspective about medical research for rare diseases.
Quantum, you may not remember but I have other rare illnesses and undiagnosed issues that lead me into researching, studying knowing about thousands of illnesses many rare like POIS. So with that knowledge I have to humbly disagree. As far as research, studies and treatments for rare disease. I?ll give toy an example so you understand. I have a disease called Familial Mediterranean Fever (FMF), odds are you no one here has heard of it. It is a type Autoinflammatory Disease, odds are no one ever heard of that either. They have only been discovered this century and they involve a genetic mutation. Very few people have it so it is a rare disease. Almost immediately once discovered they found treatments for it, Colchine which is a specific anti-inflammatory medication originally used for Gout. It has been successfully used in FMF. Not everyone responds well to it and in those cases they use specific biologics. When dr. Waldinger, originally thought POIS was an allergy to semen, if he was correct then we could have treated POIS with specific anti-allergy meds. So once we find the cause it might be a surgery or and existing medication that treats it. Not necessary that expensive drug trials need to happen. And it?s not cancer specifically that creates new drugs it?s any terminal condition. For example Cystic Fibrosis is considered a rare disease and they made amazing strides in drug research, just in the last decDe alone new drugs have come out that double some patients expected life span from 30 years to 60 years. What drug makers do to offset the smaller patient population is hike up the prices of the drug, which insurance companies usually pay. I have other rare illnesses besides FMF and each medication I take for each of them cost $500,000 a year each. My insurance only cover 70% of one and 0% of the other. I got a charity to pay for 30% of the one and 100% of the other from the company that make it. so imagine if we needed a medication like those and we have 2,000 of us, that is still $1,000,000,000/year, a Trillion dollars $$$ lol. Trust me that is plenty motivation for any pharma company from the biggest to the smallest. But like i said the key is knowing what the mechanism is and it might turn out we could use existing meds or some surgery or something. So I wouldn?t listen to your friend about cancer only getting research. I know hundreds of other rare illnesses. Also pharma company get special consideration from ?orphan? drugs.
Let's agree that we disagree, no need to go on with this discussion.
A tough holiday for many of us still dealing with this condition. :(
Guys the delay on this study is unreal.
Guys the delay on this study is unreal.
Yes it's way beyond acceptable.
You are right…the delay is unreal.
But, there is no money to gain with a POIS medication or cure. That's the way it works. You should see all the new, very effective drugs that come out each year for cancer or for diabetes! You sure have heard of the new class of wonder drugs for diabetes, the GLP1, like semaglutide ( Wegovy/Ozempic), and the new Moonjaro, which will be the "new star", dethroning Wegovy/Ozempic within a year or so. And it is not all, you also have the iSGLT1, like Forxiga, Invokana and Jardiance,, which are not only very good for diabetes/blood sugar level, but also help for the kidneys and the heart as well, preventing long-term bad effects. Those "miracles" happen because there is much, much profit to do, tens of billions of dollars a year
How much return would there be with a POIS drug or treatment ? Not even 1 million, and surely not billions.
Humans are humans, driven by obvious motivations. Pure, detached, medical research is a "side dish" that may appeal to researchers who would like to see their name associated with a breakthrough.
The pill may be hard to swallow ( pun intended) for people like us who are stuck with a rare condition.
Have you ever seen the movie "Lorenzo's Oil"? ( https://en.wikipedia.org/wiki/Lorenzo's_Oil ) I suggest you watch it, to get some perspective about medical research for rare diseases.
Any news?One of the researchers changed institution last year, and this has called for new approvals, new negotiations between institutions, new rounds of approval by boards, and so on.
(https://summit-2017.imgix.net/storage/headshots/September2017/dr-nicole-prause-2.jpg?w=800&h=800&fit=crop)
Dr. Nicole Prause, co-investigator of our
upcoming POIS Research Study got a chance to talk a little POIS in this podcast!
https://youtu.be/ImsB_q-5IIM?feature=shared&t=2100
Great news for all members, today ! :)
MAJOR NORD POIS STUDY APPROVED!
The Board responsible for protecting the rights, welfare and safety of human subjects that will participate in the POIS study have finally, after months of review, accepted the study protocol, as all their modifications, demands and criteria have been met !
This is a HUGE step, and means that soon, we may see a recruitment ad for the 2024 POIS study!!!!
*More info on our 2024 POIS Research Study, funded by all of us here at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0 (https://poiscenter.com/forums/index.php?topic=3006.0)
Great news for all members, today ! :)
MAJOR NORD POIS STUDY APPROVED!
The Board responsible for protecting the rights, welfare and safety of human subjects that will participate in the POIS study have finally, after months of review, accepted the study protocol, as all their modifications, demands and criteria have been met !
This is a HUGE step, and means that soon, we may see a recruitment ad for the 2024 POIS study!!!!
*More info on our 2024 POIS Research Study, funded by all of us here at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0 (https://poiscenter.com/forums/index.php?topic=3006.0)
Thanks for sharing, Demo !
Great news for all members, today ! :)
MAJOR NORD POIS STUDY APPROVED!
The Board responsible for protecting the rights, welfare and safety of human subjects that will participate in the POIS study have finally, after months of review, accepted the study protocol, as all their modifications, demands and criteria have been met !
This is a HUGE step, and means that soon, we may see a recruitment ad for the 2024 POIS study!!!!
(https://liberoscenter.com/wp-content/uploads/2017/04/TierneyLorenz_circle-2.png)
Dr. Tierney Lorenz is the Principal Investigator of our 2024 POIS Research Study (see link below).
(https://summit-2017.imgix.net/storage/headshots/September2017/dr-nicole-prause-2.jpg?w=800&h=800&fit=crop)
Dr. Nicole Prause, is the co-investigator of our
2024 POIS Research Study
*More info on our 2024 POIS Research Study, funded by all of us here at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0
Thanks for sharing, Demo !
And thank you, Quantum, and Limejuice & Berlin (our Admin team) for all your teriffic support - - over some mighty rocky terrain!!!
I’ve been waiting 17 years for this day - -since February, 2007 - - right from the beginnings of this forum!
MAJOR NORD POIS STUDY APPROVED!
The Board responsible for protecting the rights, welfare and safety of human subjects that will participate in the POIS study have finally, after months of review, accepted the study protocol, as all their modifications, demands and criteria have been met !
This is a HUGE step, and means that soon, we may see a recruitment ad for the 2024 POIS study!!!!
(https://liberoscenter.com/wp-content/uploads/2017/04/TierneyLorenz_circle-2.png)
Dr. Tierney Lorenz is the Principal Investigator of our 2024 POIS Research Study (see link below).
(https://summit-2017.imgix.net/storage/headshots/September2017/dr-nicole-prause-2.jpg?w=800&h=800&fit=crop)
Dr. Nicole Prause, is the co-investigator of our
2024 POIS Research Study
*More info on our 2024 POIS Research Study, funded by all of us here at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0 (https://poiscenter.com/forums/index.php?topic=3006.0)
I'm guessing we should give up hope of this [NORD: POIS Research Study] ever happening?
I think that we even now have evidence that pois is an immune driven condition…
POIS Study Update?
Also can i contact the doctors in the study? I am a doctor myself maybe i can provide insight.
I think that we even now have evidence that pois is an immune driven condition…
I think that we even now have evidence that pois is an immune driven condition…
Are the researchers also gonna look into possible gene therapy? I see that NORD is specialised in this...
Are the researchers also gonna look into possible gene therapy? I see that NORD is specialised in this...
I’ll ask, Aladin.
Do they have any idea of when the study results will be available for us?
VERY EXCITING 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
Do you know whether they [our POIS researchers] will also do gene analysis?
Thx, demografx, for asking them! I thought with AI and stuff, the medical world was getting very advanced in this domain. Unfortunately not enough for us, i understand...
Will they examine the semen for pathogens or anything in it that could cause an immunological reaction?
Will they examine the semen for pathogens or anything in it that could cause an immunological reaction?
From Dr. Tierney K. Lorenz, Principal Investigator, NORD’s POIS Research Study:
“Not pathogens per se, but we will be looking in ejaculate for a variety of immune markers including pro-inflammatory cytokines. Also we will be keeping the ejaculate samples in cryogenic storage so if we get the funding to extend the study, we might be able to look at additional markers (such as specific pathogens) if it looks like those would be helpful later on.”
What's the latest on this study? Do they need participants? I've tried to reach out to the two doctors on twitter but only one takes DMs and I haven't heard back.
Basically looking for info on how to join or follow what is going on. I know the University of Nebraska is involved, but can't find anything about it on the web.
@Demo : do you know if Dr prause or the other Dr. Lorenz, do online consultations? if so how can I contact them ?
This is pretty good news. Thank you very much.Thank you, Carlo!
WOW! The 'dream' expanded study is amazing news. Thank you to everyone involved and also to Eric who I just read was behind the addition funding!! I can't wait for the updates and for any clues we get on how to treat (or even cure) this horrible condition! The photos in the POIS Lab thread make this so tangible. 2025 is filled with optimism ;D :) https://poiscenter.com/forums/index.php?topic=4624.0 (https://poiscenter.com/forums/index.php?topic=4624.0)
…The photos in the POIS Lab thread make this so tangible…
Posted previously
VERY EXCITING 2025 POIS RESEARCH STUDY 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[&UCLA]/[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 [Dr Lorenz] and Nicole [Dr Prause] 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
Demo, Is there a way to make a fund for the POIS members? Did anyone planned it before? If there is a transparent fund that everybody can donate, the money can be used to these type of studies and POIS promotions.
We have many members. Some are doing jobs and earning. Some are students. If everyone can donate 1$, there will be a significant amount of money that can be used for necessary tasks.
Are the Trump budget cuts in medical research gonna affect this long awaited study?