Author Topic: POISCenter and funding a POIS study - a Historical Account  (Read 337 times)

Quantum

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POISCenter and funding a POIS study - a Historical Account
« on: April 02, 2021, 03:20:04 PM »
Here is a historical account on what had been made so far by POISCenter, about POIS Research. Even if no study has been completed yet, you will see that a lot of hard work has been done so far and that we are still working very hard till the POISCenter funded POIS study will have become a reality.

The next real step in raising awareness about POIS, and take initial steps toward an understanding of POIS and eventually a treatment for it, is a real, important study by an established medical research team. Then, POIS will become known by the medical community and will be talked of in media with new, interesting data and conclusions.  We talk about a real study on POIS and POIS subjects, not just an article with one or a few case reports, or an informative review of the little that is known up to now.  In addition, such a POIS study would place a foundation from which other research teams would follow on. For many years, it has been obvious to the POIS community that funding a real study was an important goal.

POISCenter had been created for that, the funding of a POIS study, a real one. This journey had been a hard one, with lots of difficulties, for a small group like us, with limited resources.   So, back in 2011, POISCenter had been created from the NSF POIS thread in order to be able to start a funding campaign for a POIS scientific study ( NSF wouldn't allow funding on its site). The NSF thread had bee created in 2007, and many early members of the NSF are still here today.  In fact, poiscenter was already a reality since 2007, because so many members were part of the NSF thread, and over 20000 posts had been made there already. The debate for funding a POIS study had been going on for years in NSF, so even if the poiscenter.com domain has been registered in 2011, the project to fund a study and the "spirit" of poiscenter.com had been present since 2007, and is still represented by members and admins, here, today.

Then, POISCenter registered POIS as a rare disorder, with NORD ( National Organization for Rare Disorders), in order to have a regulatory frame to receive research team projects, evaluate them, choose the more appropriate project, verify that all parts of the study plans are ethical. and make follow-ups with the chosen team, to make sure they follow the accepted study plan. Medical research is much more regulated and complicated than you may think, and you need a qualified IRB ( Institutional Review Board), among other things, and NORD provides all the needed regulatory frame.  After some years, in 2013, the funding campaign of POISCenter had reached the needed $34,000 to go on with an RFP ( Request For Proposal) with NORD, so that scientific teams would propose study projects to NORD.  A $34000 grant was offered through NORD for a POIS Study, finally!

In December 2013, after reviewing the projects, NORD has chosen the Rutgers team of Dr Barry Komisaruk to undergo the POIS study funded by this very forum ( see https://poiscenter.com/forums/index.php?topic=125.msg11040#msg11040 )  The POISCenter grant had been awarded, and everybody was happy that the long-awaited study would now begin !....  After a lot of administrative work, paperwork, handling of all the aspects of the regulations, etc...applications for being part of the Rutgers study began in September 2014 ( https://poiscenter.com/forums/index.php?topic=1478.msg13747#msg13747).  Please note how everything is ssssslllloooooooowwwww in official medical research... Each little step takes many months!

In February 2015, The research team was receiving equipment and was still refining the details ( https://poiscenter.com/forums/index.php?topic=2022.msg15895#msg15895 ).   And, at last, the Rutgers study began in July 2015 ( see https://poiscenter.com/forums/index.php?topic=2089.msg16600#msg16600, Dr. Wise was part of the Rutgers team).   We had a few small, interim reports ( nothing very useful, just basic information) the last one received in April 2016.  But then, the 4th report did not come when supposed to, in September 2016  (https://poiscenter.com/forums/index.php?topic=2086.0 )... something was wrong, and we had no clue of what was happening, for months.

It is only in Marsch 2017 that we learned what happened.  Eight months after it had started, around April 2016,  the Rutgers study had been stopped dead in its track by a complaint to the Institutional Review Board (IRB) from one of the early participants.  Both the reason for the complaint and the identity of the complainant are confidential, so we did not receive this information, and never will.  Poiscenter had not been informed at all of the situations before the final verdict, and the IRB asked Dr. Komisaruk for secrecy about the fact that a complaint had been made, and about the study being suspended for a ten-month investigation. Even if the IRB decided that the complaint was unfounded, Dr. Komisaruk, immediately following the IRB decision, announced that he was canceling the study and was giving back the funds, because POIS sufferers have "multiple underlying issues" that, he said, he had not the qualifications to deal with ( https://poiscenter.com/forums/index.php?topic=2449.msg20749#msg20749 ).   It is hardly possible to describe how hard this news had been on every member of POISCenter. After 6 years of continuous efforts ( yes, 6 years!), POISCenter was (almost) back to square 1, about having a POIS study being made.

But POISCenter is never to give up!   After a period where we absorbed the shock, we bounced back.  In April 2017, a new Request for Proposal had been made through NORD, to offer again our $34000 grant for a POIS study ( https://poiscenter.com/forums/index.php?topic=2462.msg20970#msg20970 ).   

in February 2019, NORD's Medical Advisory Committee had chosen the new research team, with Dr. Tiernay Lorenz as Principal Investigator.  A fresh start.  But as usual, followed a period for preparation, surveys on POIS forums, administrative work, the approbation of all the study details by the regulatory board, and so on.  This lead to applications of potential study participants, in September 2020 ( https://poiscenter.com/forums/index.php?topic=3006.msg36763#msg36763 ). 
But then...COVID-19 pandemic came, and the study has been postponed since.. !  Unbelievable... another block on the road, as if we didn't have enough.  However, we have to be very resilient - one day, this POIS study funded by POISCenter WILL become a reality!

From the outside, it can appear like POISCenter did not much since 2011... but I have written this historical account to show that it is not as it looks like and that we are still working on it.

Hopefully, there has been great, positive news in the last year.  An anonymous, generous donor from a family foundation has enhanced the NORD grant so that the research team can add all the tests they have dreamed of adding to the study! So, once the pandemic will lift and the study will be allowed to begin, we will have a great, great study going on, more in dept than originally planned.

So, patience, and patience, and patience again.  But we will get there.

I hear you when anyone says that he wants to help in order to make things go faster.  We all want it. I hope you will understand from the above historical account that everything possible has been made to make this POIS study reality and to raise POIS awareness in the medical community and in the public in general. But, the research world has many rules, and POIS is a rare syndrome with no financial benefit potential that would attract the big players in this huge game of medical research.   So, we have to be very, very patient, we will never see with POIS the kind of money invested in diabetes or in asthma.  We will not even see the numerous projects that ME/CFS has, we are too rare a syndrome for that. All that being said, it is normal to feel frustrated about this "rare syndrome" situation, but this is how it is.

We have to be resilient, this upcoming POIS study WILL be done, hopefully starting later this year!
« Last Edit: April 11, 2021, 08:20:06 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

positivethoughts

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Re: POISCenter and funding a POIS study - a Historical Account
« Reply #1 on: April 07, 2021, 05:58:54 PM »
Hi Quantum. Thanks very very much for this encouraging post. It's very helpful to remind all the work that has been done and think positively about the future. I'm very excited about the current study. I'm sure the future will be better for all of us. Just have to be patient :)

Best of luck for all of you!!

demografx

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Re: POISCenter and funding a POIS study - a Historical Account
« Reply #2 on: April 08, 2021, 01:38:07 AM »
positivethoughts, thanks for the positivity!
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: POISCenter and funding a POIS study - a Historical Account
« Reply #3 on: April 08, 2021, 08:41:49 PM »
Hi Quantum. Thanks very very much for this encouraging post. It's very helpful to remind all the work that has been done and think positively about the future. I'm very excited about the current study. I'm sure the future will be better for all of us. Just have to be patient :)

Best of luck for all of you!!
Thanks, PositiveThoughts !
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: POISCenter and funding a POIS study - a Historical Account
« Reply #4 on: April 11, 2021, 02:22:26 AM »
Quantum, your summary of the POIS Scientific Research  “agony & the ecstasy” of this forum since 2007 is...just phenomenal!

I can’t wait to read the book and see the movie!
:) :) :)

Sincerely, thank you so much. And I can’t thank you enough for all the miracles you have achieved here!!
« Last Edit: April 11, 2021, 02:25:04 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