Author Topic: POIS 2021-2022 NORD RESEARCH STUDY  (Read 36372 times)

demografx

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #340 on: April 07, 2021, 06:18:28 PM »
Limejuice, many thanks!!
« Last Edit: April 09, 2021, 05:42:06 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

Journey

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #341 on: April 09, 2021, 06:00:37 AM »
I am glad that they are doing this, having POIS for several years in my life mentally I feel like Anakin burning on the Mustafar (/u/AquantiV from Reddit came up with this comparison for POIS but it also fits what POIS makes me feel like in the general)

Just waiting till some sort of answer is found
« Last Edit: April 09, 2021, 12:10:15 PM by demografx »

demografx

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #342 on: April 09, 2021, 11:46:58 AM »


I feel like Anakin burning on the Mustafar


;D Dear Anakin ;D

Thanks for posting!



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 2021-2022 NORD RESEARCH STUDY
« Reply #343 on: April 10, 2021, 02:04:03 AM »
Please keep in mind: POIS research direction and methodology is strictly between the Research Investigators (Drs. Lorenz & Prause) and NORD’s MAC:

:) MAC FAQ :)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Doris T. Zallen, PhD
Professor of Science and Technology
Studies and Humanities
Virginia Tech University

Contractually, we POISers do *not* have any control over *how* they choose to study POIS. NORD’s medical and scientific objectivity is one big reason we funded them in the first place.
« Last Edit: April 10, 2021, 02:08:49 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

BoneBroth

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #344 on: April 10, 2021, 03:10:49 PM »
The POIS riddle can not only be solved by new research but also theoretically, based on existing knowledge, experiences and analyse results. I put far more hope in the latter then any new research. The outcome of mainstrem medical research will probably just be endless of years and after 20+ years, at best, a medicine that just hide symptoms and results in sideeffects like lower quality of life and shortened life time - just like 90% of all other pharmaceuticals. I strongly suggest that, parallell to this NORD research (that we obviously have zero influence over), we fundraise microprojects like booking appointments with, and presenting existing data for, hormonal experts. For example an evaluation at belgian doctor and world renomee hormonal expert Thierry Hertoge would cost around $600- $1000 including analyses. We must at least get experts like him to give their professional opinion on this disease and existing information.
   


demografx

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #345 on: April 11, 2021, 02:37:07 AM »
BoneBroth, I agree that we should explore as many different research avenues as possible. But we also need to be realistic about our limited fundraising, budgeting and oversight capabilities.

As Quantum explains, it took enormous efforts - - since 2007 - - to just get this far. For a rare disorder, we are achieving comparatively great strides.

If you, BoneBroth (and others) are willing to step forward and put in significant amounts of time, including fundraising, to steer us in new research directions, POISCenter’s admin & mod team will be very grateful. 
« Last Edit: April 11, 2021, 01:27:48 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

BoneBroth

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #346 on: April 11, 2021, 03:14:02 AM »
I would! If the fundraising could be trusted and anonymous. How do you handle donations at the present? Unfortunatly many POIS'ers have not been able to have normal jobs and therefore do not have much money to set aside. I vote for starting a secure fundraising system for our members. One option would be a fundraising thread where members give a "donating promise" for each mission (sub thread) provided the monetary goal is achieved. There are many commercial donation platforms on the market, but fundraising sites keep a percentage of the donations.
« Last Edit: April 11, 2021, 03:20:38 AM by BoneBroth »

Limejuice

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #347 on: April 11, 2021, 07:51:56 AM »
Hi Bonebroth,

Demo can correct me if wrong but the family foundation that has bolstered our NORD study testing scope has now included hormone testing (both pre and post POIS). Is there a particular hormone test and/or test approach that your curious about?
« Last Edit: April 11, 2021, 09:01:44 AM by Limejuice »

BoneBroth

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #348 on: April 11, 2021, 08:44:52 AM »
Hey Limejuice!

I'm just saying that this forum is starved of professionals views on POIS. There's a lot of personal experiences and the lab tests are growing but I havn't found one single opinion from a hormonal expert here. We need to contact such professionals to evaluate current information.

For this to work we need:

1. A POIS-compilation consisting of, for example, personal stories, lab tests, studies, theories.
2. A meeting with an expert (1-2 hours?). They dont come free so we would need to fundraise.
3. They might want to do a blood analyse of someone with POIS. We need fundraising for that too.

Maybe we should ask a couple of professionals what it would cost.
« Last Edit: April 11, 2021, 08:57:02 AM by BoneBroth »

Quantum

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #349 on: April 11, 2021, 09:08:47 AM »
Hi BoneBroth,

Your idea of micro projects is good but has some potential issues, like, what hypothesis will these microprojects be working on ( many differents views on POIS potential causes, not just hormones), and who will pay for what micro-project ( one campaign for each ?), and who will undergo the testing, and what if some problems arise ( the ethical and responsibility side... remember the Rutgers study...), and if many projects are on the table which one will go first, and so on. This is not as simple as it seems, and will call for debate, preparation, funding, coordination, and even maybe legal papers if treatments are tested.  Obviously, poiscenter, as a whole forum, has chosen the legal frame of NORD to avoid that kind of issue, and invested time and money in a larger, but slower project, and will stick to that approach for now, because resources, both in time and money, are limited.

However, any micro-projects for POIS would be useful for POIS research, and poiscenter would be a great place to share ideas of such projects, and sharing the progress and discuss those micro-projects, and publish their outcome.  But as I see it now, they would probably be supported financially and legally by those who will invest the considerable time needed to undertake them.   Obviously, creating a team for a specific micro-project would be needed, but only that, creating a team, is sometimes complicated on poiscenter .

I recently wrote a historical account  POIS research funding by poiscenter ( https://poiscenter.com/forums/index.php?topic=3781.msg40119#msg40119 ), to show that POIS research is a very slow process and needs patience and dedication. And, yes, you are totally right, BoneBroth, POIS research does take years and years, as you see in this account... but this is how it works in the world of research.   Micro-projects may allow for some faster, partial results, but in proportion, a lot of preparation and time will be needed anyway, and there will be problems to manage along the way for sure.

Personally, I will follow with great interest any project of yours, but I already invest a lot of spare time in helping to manage and to moderate the forum, and, when it will resume, to help with the upcoming NORD study.

About POISCenter being a place that could host a fundraising link for your micro-projects or any other micro-project, this would have to be discussed among the moderators' team, as it is a request we never had before.   If you go ahead with your project and it gains momentum and you want to go ahead with it, let us know and we will discuss this within the moderators' team.

Anyway, thank you for your sincere intention and your involvement in helping to solve the POIS puzzle :)
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

Limejuice

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #350 on: April 11, 2021, 09:52:57 AM »
That makes sense and I'd support your efforts in the framework that Quantum laid out.  In 2013 I saw an endocrinologist regarding POIS but strangely all she suggested was a vitamin B panel (and nothing to do with hormones).  On another note, we know that hormones like testosterone (and progesterone to a lesser extent) work good at reducing symptoms for some sufferers.

With the current study, our researchers are very knowledgeable in hormones and I bet the final data on hormones could be useful in a follow up study if needed.  But that could take awhile.

In contrast to a major study, you could take a more personal approach in designing a study with a Dr.  that could be flexible, and faster, and use personal insurance to finance. I've done this over the years, which has included a gel electrophoresis on my semen to dissect it's DNA and then ran antibody tests against each dissection to see if allergic reactions (IgE and IgG) would occur. I worked with Jonathan A. Bernstein from the University of Cincinnati.

Edit - The 'study' with Dr Bernstein cost about $3000 and insurance covered 80% although it was a struggle. The seminal plasma hypersensitivity study came with a 5 page report that he personally wrote including the method, analysis of results, and recommendation. Gel electrophoresis images with IgE and IgG marker graphs were very professionally done.
« Last Edit: April 11, 2021, 10:03:45 AM by Limejuice »

BoneBroth

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #351 on: April 11, 2021, 10:40:15 AM »
Yes I see the problems involved with prioriting microprojects. That is something we could discuss. But for now I limit my suggestion to only one microproject - to get professionals view. Let's set a goal to 10 diffrent professionls. Then the question is which professionals? Perhaps that is something we could discuss. My aim here is to enrich the POIS forum with professional thoughts on the subject and I belive that there are experts that can explain this symptom far more then anyone here has.
« Last Edit: April 11, 2021, 10:57:39 AM by BoneBroth »

demografx

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #352 on: April 11, 2021, 12:54:33 PM »

...If the [POIS Research] fundraising could be trusted and anonymous. How do you handle donations at the present?...


We would look to you to manage that. I was the
Team Leader in raising $34,000 right here for the NORD portion of the current study, and believe me, it was extraordinarily tough and time consuming.
It took 5-6 years! Starting at the NSF/POIS Forum in 2007. Because NSF prohibited fundraising, we all packed our bags and started POISCenter, as Quantum mentioned, in 2011.
https://poiscenter.com/forums/index.php?topic=125.0
Above link: 15-page thread that covers only a small portion of our fundraising history.

I ran my own business and this was harder than any of my business projects! Frankly, I’m burned out from doing it, so I leave that up to you.


Post-edit: our current NORD Research Team is committed to helping us eventually tap into big Government Grant money - - over $39 billion is spent annually on medical research. The most important first step: completing this current study, which will give us the credibility that is needed to attract major interest in POIS! This would also help BoneBroth’s interest in sub-projects which could be
sub-contracted to various professionals in very specific areas, e.g., hormones.

There are many ways to go, and they don’t necessarily “compete” with one another.
« Last Edit: April 12, 2021, 05:55:27 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

Muon

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #353 on: April 13, 2021, 03:45:22 PM »
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.

demografx

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #354 on: April 13, 2021, 10:41:31 PM »
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!
« Last Edit: April 14, 2021, 01:23:40 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 2021-2022 NORD RESEARCH STUDY
« Reply #355 on: April 14, 2021, 01:58:22 PM »

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!

From Dr. Tierney Lorenz (POIS Study PI -[Primary Investigator])

cc:    Dr Nicole Prause (co-Investigator)

“Thanks Demo–
 
As always we appreciate the links to ongoing research!
 
Cheers
TKL”
« Last Edit: April 14, 2021, 02:00:32 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

Mushnikk

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #356 on: April 14, 2021, 02:39:37 PM »
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.

demografx

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #357 on: April 14, 2021, 04:19:16 PM »
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?
« Last Edit: April 15, 2021, 12:09:27 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

Hopeoneday

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #358 on: April 14, 2021, 04:34:51 PM »
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..
Dr-pois.

Prospero

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #359 on: April 15, 2021, 07:30:27 AM »
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, which is a sequel of this one : Ideas on Herpes Induced POIS