Author Topic: 2025 POIS SCIENTIFIC RESEARCH STUDY  (Read 165515 times)

demografx

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #500 on: July 23, 2022, 11:17:51 PM »

For those of you who are not aware that our original scope of study has expanded significantly
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
10 years of significant POIS-reduction, treatment consisting of weekly (52 weeks/year) testosterone self-injections.

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

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

demografx

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #501 on: July 23, 2022, 11:40:30 PM »



==================================================
2022 POIS Research Study
======================================================

• funded by us at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0


• For more recent POIS Study news:
https://poiscenter.com/forums/index.php?topic=3006.480



10 years of significant POIS-reduction, treatment consisting of weekly (52 weeks/year) testosterone self-injections.

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

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

demografx

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #502 on: July 27, 2022, 04:43:34 PM »
I really like Dr. Prause’s background and her focus on the changes orgasm has in our body. As I said before, I suspect the neurotransmitters released in the moments after the orgasm play a significant role in POIS, and probably something is not occurring as it should. The release of a "wrong" neurochemical cascade could result in POIS symptoms.

We should be encouraged for her previous studies and her knowledge about the brain response to orgasm.


Nice! I actually just gave a two hour interview about orgasm data yesterday (it does not release until September 2022).




Dr. Nicole Prause,
POISCenter-funded 2022 NORD Study’s POIS researcher/co-Investigator
10 years of significant POIS-reduction, treatment consisting of weekly (52 weeks/year) testosterone self-injections.

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

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

demografx

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #503 on: July 28, 2022, 06:01:47 PM »
I really like Dr. Prause’s background and her focus on the changes orgasm has in our body. As I said before, I suspect the neurotransmitters released in the moments after the orgasm play a significant role in POIS, and probably something is not occurring as it should. The release of a "wrong" neurochemical cascade could result in POIS symptoms.

We should be encouraged for her previous studies and her knowledge about the brain response to orgasm.


Nice! I actually just gave a two hour interview about orgasm data yesterday (it does not release until September 2022).




Dr. Nicole Prause,
POISCenter-funded 2022 NORD Study’s POIS researcher/co-Investigator




Well, looking forward to it in September!

10 years of significant POIS-reduction, treatment consisting of weekly (52 weeks/year) testosterone self-injections.

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

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

Disaster

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #504 on: July 28, 2022, 08:53:19 PM »
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. But it seems like it?s been at least a year since the vaccines and things have opened up. Why did she only now just get the specimen holders? I feel like everything should have been prepared so that the second things opened up all the participant could get in there immediately. Also why are we doing only 1 study at a time? You know that no big organization has to pick or run these studies? I have been a part of many illness foundations and have seen how they pass out grants like it?s going out of style.

The only reason I haven?t started a foundation yet is because I am the sickest patient on here, I am bed bound going on 7 years. But I know there are many many old and new on here who are still working do living normal lives. All it takes is 1 of you to start the charity. Then we can have conferences where we get the sexual medicine doctors in the same room coming up idea to diagnose and treat us, like lorenzo?s oil, the movie. And we could have those same doctors collab on research and give presentation. Then when the doctor?s see the foundation they will take our illness more serious and realize there is potential funding if they do research. Instead I feel like we have all our eggs in 1 basket. And if you count that first study with the functional MRI, it?s a half a decade, hopefully not wasted if this results in anything,  but still if this is not started yet then how many more years are we looking at?

Last 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 know you guys are trying to think positive about this but you have to admit it?s frustrating even more so for us then the current researchers because it?s the 2 research for us and the 1st on POIS for them. So it is twice as long for us for the same research funds.

I 2nd what Quantum says about you haters and complainers to start your own websites, reddit is not the same as your own website.  And about research then start a charity like I said and start doing it and less talk. I wish I could that?s why I push for it, but I?m not criticizing like you guys. Theses guys worked hard and did more than anyone so far! I appreciate their work and this forum. And without it we have next to nothing so thanks guys.
« Last Edit: July 31, 2022, 12:49:09 PM by demografx »
POIS sufferer for over 3 decades. Has progressively gotten worse over the years and I became completely disabled around 2011. My case of POIS is very severe.

Muon

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #505 on: July 29, 2022, 05:03:26 AM »
@Disaster
There are more MDs showing interest in doing a study. Do you have any suggestions/ideas for research?

Quantum

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #506 on: July 29, 2022, 07:14:54 AM »
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,
We cannot say for sure, but my personal guess is that it should start this fall.  At any rate, if there is not a catastrophic worsening of the pandemic  ( and the war in Ukraine does not degenerate into World War III  ::) ) , I think it should start before the end of 2022.  But as we have seen in the past, this is only a guestimate, so don't take this for granted.
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

demografx

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #507 on: July 30, 2022, 12:04:11 PM »

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”.
« Last Edit: July 30, 2022, 09:28:54 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of weekly (52 weeks/year) testosterone self-injections.

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

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

Disaster

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #508 on: July 31, 2022, 11:39:21 PM »

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?  ???
POIS sufferer for over 3 decades. Has progressively gotten worse over the years and I became completely disabled around 2011. My case of POIS is very severe.

demografx

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #509 on: August 01, 2022, 03:44:25 AM »

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?  ???

Nebraska.

Both Dr Lorenz (UN) & Dr Prause (UCLA) are originally from the famed sexual research organization at the
Kinsey Institute, Indiana


As a “refresher”, I have re-posted some 2022 POIS Research Study relevant info.
Demo
« Last Edit: August 01, 2022, 10:58:54 AM by demografx »
10 years of significant POIS-reduction, treatment consisting of weekly (52 weeks/year) testosterone self-injections.

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

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

Disaster

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #510 on: August 01, 2022, 12:30:16 PM »
The question still stands, not do the study in Nebraska where there are probably a lot less covid restrictions?
« Last Edit: August 01, 2022, 06:24:41 PM by demografx »
POIS sufferer for over 3 decades. Has progressively gotten worse over the years and I became completely disabled around 2011. My case of POIS is very severe.

demografx

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #511 on: August 01, 2022, 04:38:59 PM »
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.
« Last Edit: August 01, 2022, 06:22:42 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of weekly (52 weeks/year) testosterone self-injections.

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

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

Disaster

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #512 on: August 01, 2022, 09:50:36 PM »
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.

#1 that makes no sense. you say,?there is no covid barrier in LA? when the whole delay is due to a covid barrier in LA. Every state has different covid restriction. California arguably has had the most 10.7 million COVID cases, the most in all of America that is why they have had come of the strictest laws regarding indoor activities among other reason. Nebraska on the other hand has had 515,000 cases which is 38th out of 50 states.

#2 You what are we talking about for moving lab equipment, are they building cruise ships? It?s probably a mater of loading the trunk of 1 car lol. As far as Employees again what are we talking about it? This POIS study is not paying for those employees salaries. They have other things they are doing and can still do and how many employees are we talking about. Again 100 employees or are we talking about maybe 1 lol?

#3 If you flip that around the ?Prestige? is still exactly the same man! A study done at U. of Nebraska in conjunction with UCLA. It?s the same exact thing man. Same Powerhouse! Same Co-investigators!

The difference is the study would be started, and finished by now.  Instead let?s be reactive and wait 3 more years.
POIS sufferer for over 3 decades. Has progressively gotten worse over the years and I became completely disabled around 2011. My case of POIS is very severe.

Limejuice

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #513 on: August 02, 2022, 09:43:37 AM »
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.
« Last Edit: August 02, 2022, 10:31:12 AM by Limejuice »

Disaster

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #514 on: August 02, 2022, 03:51:35 PM »
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.

Kind of a ridiculous statement. No one said anything bad about the researchers to warrant such a statement. And studies don?t work like that. Just because some study on a disease fails no one stops researching it.

The pandemic and working around it is not something anyone has experience with. This is just a practical matter of location and timeframe, not a knock on the type of research or how good it will be. Instead of being defensive for no reason, just look at the logic of my statement. It would be the same exact research, with the same exact researchers, the same exact patients, only done by now and not delayed 2.5 years. That is just common sense, nothing more is needed to think about. In any situation it makes sense.
POIS sufferer for over 3 decades. Has progressively gotten worse over the years and I became completely disabled around 2011. My case of POIS is very severe.

demografx

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #515 on: August 02, 2022, 04:51:44 PM »


Some forum members have expressed difficulty in accessing the newspaper article  link about our POIS Research Study, so here is a text version of that article.



Crowdfunded grant will help UNL researcher study sex-related condition
      By CHRIS DUNKER Lincoln Journal Star




Dr. Tierney Lorenz, our
POISCenter-funded
Research Study 2022
Principal Investigator


Hundreds of millions of dollars slated for research flow into the University of Nebraska-Lincoln each year from federal agencies like the National Science Foundation and the U.S. Department of Agriculture.
Multimillion-dollar research projects that center on creating new materials that will make computers even faster or to study drug addiction in rural areas are a large part of UNL's $308 million in research expenditures this year.
But there are also research grants that fly under the radar while also advancing understanding of the human condition.

Take a recent grant awarded to UNL researcher and assistant professor of psychology Tierney Lorenz from the National Organization of Rare Disorders [NORD] to study a little-known condition affecting men following ejaculation.
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. Symptoms can last for a few hours or as long as a week, Lorenz added.

“It's not life-threatening in any way, but these guys can get pretty sick, and the flu can take a big chunk out of their life," she said.
An online community for men who suffer from the disorder raised the funds and worked with the nonprofit National Organization for Rare Disorders in asking for research proposals. Lorenz and Prause's study of the "Autonomic, endocrine, and immune mediators of post-orgasmic illness syndrome" was accepted earlier this year.
The researchers believe a better understanding of the disorder could further larger insight into the physiology of the human orgasm, which could improve sexual health for all, even those without the condition.

It also signals a new track of research at UNL. Lorenz, who just completed her first year on faculty, is the director of the Women, Immunity and Sexual Health lab, which studies how sexual behavior in women affects their immune and endocrine functions, while also providing help to survivors of sexual trauma through basic science and clinical research.
Lorenz, as well as Prause, previously conducted research at the Kinsey Institute at Indiana University Bloomington, where she studied the suppression of women's immune systems during ovulation -- an evolutionary change to prevent the immune system from attacking sperm cells or a zygote -- and whether sexual activity modulates that suppression.
She said the forthcoming POIS study, which will largely take place in Prause's lab in California, is a continuation of her work understanding the larger immune effects of the sexual response cycle.
"It's a really rare condition in which the whole system kind of goes haywire," Lorenz said, "but when we understand how something breaks down, it also helps us understand how it works.”






Dr. Nicole Prause
POISCenter-funded NORD Study’s researcher/co-Investigator



For those of you who haven’t seen the original announcement.


Our POIS Research Team


https://rarediseases.org/for-clinicians-and-researchers/research-opportunities/research-grant-recipients/
(See Research Grant Recipients)

From NORD:

Dear Demo,

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

Principal Investigator: Tierney Lorenz, PhD
Institution: University of Nebraska-Lincoln
Project Title:  Autonomic, endocrine, and immune mediators of Post-Orgasmic Illness Syndrome.

With funding from POISCenter.com

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

Research Administration
National Organization of Rare Disorders (NORD)





Dr. Tierney Lorenz, our Primary Investigator



Dr. Nicole Prause, our Co-Investigator




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

10 years of significant POIS-reduction, treatment consisting of weekly (52 weeks/year) testosterone self-injections.

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

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

demografx

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #516 on: August 02, 2022, 04:52:51 PM »

For those of you who are not aware that our original ($31,000) scope of study has ***expanded ($$$)*** significantly
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

10 years of significant POIS-reduction, treatment consisting of weekly (52 weeks/year) testosterone self-injections.

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

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

demografx

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #517 on: August 02, 2022, 06:10:04 PM »
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]

Beautifully expressed sentiments!
« Last Edit: August 03, 2022, 10:38:49 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of weekly (52 weeks/year) testosterone self-injections.

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

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

Kit

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #518 on: August 08, 2022, 10:44:06 PM »
I tried to participate in this study over 2 years ago and when I met one of the researchers, it seemed very off to me so I never pursued it. I have been malpracticed by Dr. I Goldstein, a doctor that this forum recommended (guy is highly irresponsible and is still being recommended by the forum, so who really wants to help who?). I really hope that members are being safe when participating in these studies, and I will fully support them if they feel that they have been harmed as a result of negligence or irresponsibility from the doctors or researchers that this forum is mentioning. I would also like admins to do the same. Mistakes happen, but irresponsibility, negligence, and intentional lies are different and should be held accountable. I just hope that members are able to find their relief method on time from people they can truly trust and the information they create so that they can pursue happier lives.
« Last Edit: August 09, 2022, 11:38:45 AM by Kit »

Quantum

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #519 on: August 09, 2022, 09:42:23 PM »
I tried to participate in this study over 2 years ago and when I met one of the researchers, it seemed very off to me so I never pursued it. I have been malpracticed by Dr. I Goldstein, a doctor that this forum recommended (guy is highly irresponsible and is still being recommended by the forum, so who really wants to help who?). I really hope that members are being safe when participating in these studies, and I will fully support them if they feel that they have been harmed as a result of negligence or irresponsibility from the doctors or researchers that this forum is mentioning. I would also like admins to do the same. Mistakes happen, but irresponsibility, negligence, and intentional lies are different and should be held accountable. I just hope that members are able to find their relief method on time from people they can truly trust and the information they create so that they can pursue happier lives.

HI Kit,

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

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

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

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

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


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

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

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