Author Topic: POIS NORD RESEARCH STUDY  (Read 124903 times)

Journey

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Re: POIS 2023 NORD RESEARCH STUDY
« Reply #560 on: March 10, 2023, 06:59:20 AM »
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 symptoms

mike_sweden

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Re: POIS 2023 NORD RESEARCH STUDY
« Reply #561 on: March 14, 2023, 03:28:54 AM »
The doctors/researchers should make a POIS-specific video/article/something
[/quote]

yes obviously, but most likely they dont because they have no findings at all

very very depressing how this research is not carried out in a serious way

berlin1984

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Re: POIS 2023 NORD RESEARCH STUDY
« Reply #562 on: March 14, 2023, 04:07:48 AM »
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...


demografx

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Re: POIS 2023 NORD RESEARCH STUDY
« Reply #563 on: March 14, 2023, 10:09:53 PM »
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...

Thanks, Berlin!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

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

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

Journey

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Re: POIS 2023 NORD RESEARCH STUDY
« Reply #564 on: March 15, 2023, 09:25:39 AM »
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...
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

Any extra research is good

demografx

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Re: POIS 2023 NORD RESEARCH STUDY
« Reply #565 on: May 27, 2023, 10:05:40 PM »
2023 UPDATE

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.
https://research.oregonstate.edu/irb/what-institutional-review-board-irb

In our case, they are *now* the UNL (University of Nebraska - Lincoln) and UCLA (University of California Los Angeles)  IRB’s.

« Last Edit: May 28, 2023, 04:07:54 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

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

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

demografx

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Re: POIS 2023 NORD RESEARCH STUDY
« Reply #566 on: May 27, 2023, 10:06:52 PM »

The [Flibanserin] case report has been published in [scientific] literature. [see Muon link at page bottom].




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


Funding for the POIS Research Study by NORD was provided by us (forum members here at POISCenter.com)!
https://poiscenter.com/forums/index.php?topic=3006.0





Masumi Padhye, MD Candidate 2023

A key member of our POIS Research Team, Dr Nicole Prause, attended a Conference, which was a joint meeting of ISSM/SMSNA, at which Masumi Padhye (above) was presenting:

“Flibanserin For [POIS]
Post-Orgasmic Illness Syndrome”


Flibanserin for Post-Orgasmic Illness Syndrome: A Case Report

Paper specific discussion thread.
« Last Edit: May 28, 2023, 11:49:39 AM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

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

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

demografx

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Re: POIS 2023 NORD RESEARCH STUDY
« Reply #567 on: May 27, 2023, 11:05:07 PM »




“…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!
« Last Edit: May 29, 2023, 10:50:17 AM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

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

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

demografx

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Re: POIS 2023 NORD RESEARCH STUDY
« Reply #568 on: May 30, 2023, 06:34:33 PM »

…Conclusion: we’re very fortunate!


From the POIS Research Team:

“And we are fortunate to work with such a well organized, motivated and educated patient group!!! “


for more info about the 2023 POIS Research Study:
http://tinyurl.com/r2j6buuz


My original [full] post:





“…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!
« Last Edit: May 30, 2023, 06:55:08 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

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

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

demografx

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Re: POIS 2023 NORD RESEARCH STUDY
« Reply #569 on: June 01, 2023, 02:30:56 PM »
…Conclusion: we’re very fortunate!
From the 2023 POIS Research Team:
“And we are fortunate to work with such a well organized, motivated and educated patient group!!! “

for more info about the 2023 POIS Research Study:
http://tinyurl.com/r2j6buuz
My original [full] post:


“…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!
« Last Edit: June 01, 2023, 02:42:32 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

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

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

Disaster

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #570 on: August 28, 2023, 01:56:38 AM »

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


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

Good idea though, also not sure why there is a cost to taking BP when almost every single one of the hundreds of doctors I have been to do for every doctor visit. 🤷🏻‍♂️
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.

Disaster

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Re: POIS 2023 NORD RESEARCH STUDY
« Reply #571 on: August 28, 2023, 02:24:35 AM »
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
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 #572 on: August 28, 2023, 06:36:05 AM »
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/ ), 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 . 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.

Worth re-reading!

I would like to add: that POIS - - as a rare disorder - - is doing far better than than most rare disorders in research status.

Yes, it’s frustrating! But those are the cards we were dealt with in POIS.

As a researcher at UCLA (one of our POIS Study partners) told me recently: “POIS Research would go a lot faster if it had a “C” (for cancer) in front of it!!”

Thanks, everyone, for your teriffic patience, understanding and confidence in your POISCenter Admin Team.

Together, we will Beat This Monster!!!
« Last Edit: August 28, 2023, 06:54:38 AM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

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

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

Quantum

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Re: POIS 2023 NORD RESEARCH STUDY
« Reply #573 on: August 28, 2023, 11:04:13 AM »
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 ) I suggest you watch it, to get some perspective about medical research for rare diseases.
« Last Edit: August 28, 2023, 11:43:08 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

hurray

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Re: POIS 2023 NORD RESEARCH STUDY
« Reply #574 on: August 28, 2023, 08:42:38 PM »
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.

demografx

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Re: POIS 2023 NORD RESEARCH STUDY
« Reply #575 on: August 29, 2023, 07:29:29 AM »
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.

yes, hurray, excellent point!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

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

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

mike_sweden

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Re: POIS 2023 NORD RESEARCH STUDY
« Reply #576 on: September 01, 2023, 03:10:33 PM »

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

Something very fishy about these studies. Or complete incompetence.
« Last Edit: September 01, 2023, 08:07:38 PM by demografx »

Disaster

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Re: POIS 2023 NORD RESEARCH STUDY
« Reply #577 on: September 07, 2023, 11:22:18 AM »
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 ) 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.
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.

Quantum

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Re: POIS 2023 NORD RESEARCH STUDY
« Reply #578 on: September 07, 2023, 07:03:29 PM »
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 ) 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.   I am sorry, but I do not take any interest in this kind of discussion. 

Let's agree that we disagree, no need to go on with this discussion.
« Last Edit: December 15, 2023, 04:36:42 PM by demografx »
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Disaster

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Re: POIS 2023 NORD RESEARCH STUDY
« Reply #579 on: September 08, 2023, 11:32:24 AM »
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 ) 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.

Let's agree that we disagree, no need to go on with this discussion.

You made the question ?How much return would there be with a POIS drug or treatment ? Not even 1 million, and surely not billions.? All I did was point out that was not true and I named rare diseases where there were medications developed and I explained with cost why it is financially a good return. Sorry you don?t like being proven wrong. But you are the one starting the argument by saying triggering things like ?view, you just change your position so that you can argue and be in opposition to anything.? when in fact I haven?t changed any point of view at all. I was specifically talking about this one study we are waiting for. You explanation has nothing to do with it. Go ahead and list all of these so-called rare disease you think have no treatments. I can name you twice as many rare disease that do have treatments. It comes down to researchers discovering a cause of an illness so that they have a target to experiment on. That?s what we are lacking and that?s what studies like this may eventually uncover if we ever get through one. I?ve been saying it to this forum for years now that we need to have someone step forward and create a non profit foundation or association to organize researchers. That is how that treatment was created in Lorenzo?s oil. Without a foundation, and a medical advisory board on that foundation little attention will ever come to POIS to the researcher and doctors out there. I would do it myself if I wasn?t so severely ill from all my other illnesses.



« Last Edit: September 09, 2023, 11:14:40 AM 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.