Author Topic: Our New RFP ( Request For Proposal) for the new study is out !  (Read 48992 times)

Defsync

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #75 on: December 21, 2018, 11:28:55 AM »
Ye know, the way this group has been conducting itself, doing its own research collection, questioning EVERYTHING, going out and sifting through tens of thousands of online docs and research, got me thinking the other day after I watched the Gary Cooper film on lou gehrig (the father of ALS). After poking around some reddit threads on MS and ALS, it struck me that, there are hundreds of thousands out there who desperately want answers, but no one is organizing those people to do what WE have been doing here.

Wouldnt it be an interesting thing, if we were to do maybe a PSA video, not specifically on POIS, but a video on how people struck with rare diseases, can organize and conduct research themselves in order to assist the actual organizations conducting medical research? How to get NORD grants?

We have learned that medical society suffers from the same faults and misgivings and falsehoods as any societal organization by virtue of "humans err", and that NOTHING can be assumed when one is seeking answers to their own rare medical conditions.

So the idea is, we create a PSA video on youtube, instructing how people with rare diseases can come together, by creating their OWN forums, their OWN surveys, how to correspond with actual medical colleges and researches, and by doing such a video at the end when people ask well shit where did you guys learn to get so good at doing this, we tell them a little bit about POIS and who we are. By helping other groups of rare diseases learn how to effectively help their own cause in finding a cure for theirs, it could help point people to want to help us spread the word as well. And would be less icky than a video just talking bout how O's make u crazy and painful =P

Oh and hi and merry xmas and all that. ;P

Oh yeah and to those who want a social hobby thats forgiving of people who might suffer from POIS, I would suggest boardgaming =) I've cofounded a local boardgaming club, the only one of its kind in this area strictly for tabletop gaming (and not trying to sell you something, like a gaming store), and we have our own clubhouse in a fancy part of town and been pretty successful at funding it as a non-profit. =)
« Last Edit: December 21, 2018, 11:35:09 AM by Defsync »

Nas

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #76 on: December 21, 2018, 01:55:23 PM »
Ye know, the way this group has been conducting itself, doing its own research collection, questioning EVERYTHING, going out and sifting through tens of thousands of online docs and research, got me thinking the other day after I watched the Gary Cooper film on lou gehrig (the father of ALS). After poking around some reddit threads on MS and ALS, it struck me that, there are hundreds of thousands out there who desperately want answers, but no one is organizing those people to do what WE have been doing here.


On one side we are completely lucky that we live in the age of Internet, wherein unlimited information is available with a click of a button. We did so much testing and theorizing I feel like we almost solved the mystery of POIS. Yet few of us found any relief method. I'm still stuck living in limbo where I don't know what will be my future and how I would construct relation ships with other people. I was hoping that soon enough at least I would find a remedy, but evidently I haven't, I've tried every goddemn thing that had been mentioned in this forum, yet, no relief...   

certainlypois2

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #77 on: December 23, 2018, 03:03:20 PM »
Nice to see you back  defsync

demografx

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #78 on: December 23, 2018, 03:55:58 PM »

Nice to see you back  Defsync



Yes, ditto!

As Defsync mentioned, he posted in 2007! And b_jim! If I

missed anyone, please remind me!


Demo





« Last Edit: December 23, 2018, 04:01:29 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

Defsync

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #79 on: December 24, 2018, 01:25:53 PM »

Nice to see you back  Defsync



Yes, ditto!

As Defsync mentioned, he posted in 2007! And b_jim! If I

missed anyone, please remind me!


Demo





aw thanks! =) So, you guys are preparing to get another NORD grant, and of course Im going to give my unsolicited advice.

I would let them know the issues you had with the last one, 1) they stalled for a year and a half because they the idea of men masturbating for research made them feel icky (haha but seriously you know what i mean) 2) they put the kabosh on it because of a complaint, ignoring the fact that this condition can SEVERLY IMPACT A PERSONS COGNITION AND CAUSE MINOR DEMENTIA, so there needs to be an undersatnding in place that ensures the reasearch completes and that "complaints" are handled keeping in mind the one with the complaint might not be in the right mind when making it (I have no specifics on the complaints made against rutgers, this isnt a statement that i know what that was about, im just suggesting this because it makes a ton of sense.)

3) MY situation has changed somewhat. I am able to travel away from home for a week at a time if necessary. In other words, I am willing to submit myself for research, and let em pick my brain. It would also give me the opportunity to introduce to the research the idea of doing rigorous cognition tests before and after, because no offense, the cognition loss is the shit that wrecks MY life, and im sure others as well, so I would like to have actual labrotory proof of it. <--- now keep in mind, if we prove that, at least I believe, that would get a LOT more people to pay attention to us and could possibly help us with way more research money. Keep in mind that if proven, in a condition thats not tested for at all, it could put the entire sexual psychology industry on its knees, now that theres a new element that could be affecting people that no one was aware of. just saying. It would become a huge news item, I believe. Could open up the door in funding like never before.

So yeah, however, as Im sure some remember, Im a bit of a loose cannon, so if I go, I hope someone like quantum or demo goes as well, as you really dont want me to be the "face" of this, Im just good at being a grunt and getting the mission accomplished in the best way possible with good ideas.

Muon

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #80 on: December 24, 2018, 01:48:40 PM »
...ignoring the fact that this condition can SEVERLY IMPACT A PERSONS COGNITION AND CAUSE MINOR DEMENTIA...

Perhaps my comment is a bit off-topic but the dementia part scares me sometimes especially since my brother has tested positive for BDNF, where low BDNF levels are associated with Parkinson and Alzheimer disease aside from depression and stress. I can't remember who told me this but there were a few older POIS patients who developed Parkinson's in their 40's.Click here

Nas

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #81 on: December 24, 2018, 06:16:58 PM »
...ignoring the fact that this condition can SEVERLY IMPACT A PERSONS COGNITION AND CAUSE MINOR DEMENTIA...

Perhaps my comment is a bit off-topic but the dementia part scares me sometimes especially since my brother has tested positive for BDNF, where low BDNF levels are associated with Parkinson and Alzheimer disease aside from depression and stress. I can't remember who told me this but there were a few older POIS patients who developed Parkinson's in their 40's.Click here
I can't believe I'm saying it, but, should we start taking Alzheimer medications? I mean, nothing for me worked to fix my cognitive ability. I might as well try to preserve what is left of it.

Defsync

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #82 on: January 03, 2019, 02:59:09 AM »
...ignoring the fact that this condition can SEVERLY IMPACT A PERSONS COGNITION AND CAUSE MINOR DEMENTIA...

Perhaps my comment is a bit off-topic but the dementia part scares me sometimes especially since my brother has tested positive for BDNF, where low BDNF levels are associated with Parkinson and Alzheimer disease aside from depression and stress. I can't remember who told me this but there were a few older POIS patients who developed Parkinson's in their 40's.Click here
I can't believe I'm saying it, but, should we start taking Alzheimer medications? I mean, nothing for me worked to fix my cognitive ability. I might as well try to preserve what is left of it.

Lord no. I have. Out of everything I've ever tried, alzheimers scripts nearly killed me. You dont want details. Acetylcholinesterase inhibitors are no joke man, and have to be carefully titrated up over long periods of time before they become effective.

On the topic of NORD grants, I feel like as a group we should look at multiple universities and researchers, and have round robin discussions on who might be the best for a grant. Getting chummy with one researcher then deciding hey you know what, lets give em a shot is probably not the best method for choosing people who are going to take POIS research 110% seriously. I also think doctors in sexual medicine shouldnt be considered, and instead the focus should be on neurologists, like the one who did the study about dementia in men post vasectomy. Doctors who have an inclination into POIS-like interactions, but whose main discipline is neurology.

demografx

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #83 on: January 04, 2019, 01:15:51 AM »

I also think doctors in sexual medicine shouldn’t be considered...


Why not?


« Last Edit: January 09, 2019, 01:26:46 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: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #84 on: January 26, 2019, 01:55:45 PM »
NORD just informed me that the POIS search results on NORD's website now include data from NIH's (National Institutes of Health) GARD (Genetic and Rare Diseases Information Center).


https://rarediseases.org/?s=pois&submit=


https://rarediseases.org/gard-rare-disease/10809/postorgasmic-illness-syndrome/


Thanks to POISCenter members, including Stef, who helped put this together starting a few years ago!
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: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #85 on: January 31, 2019, 11:12:52 AM »
We are lucky if this research uncovers a tiny part of the mechanism of POIS
Thank you for expressing a realistic expectation!

Please also keep in mind that NORD considers this current research to be a  “baby step” with “seed money” that we ourselves raised at POISCenter. The ultimate goal is to attract BIG players, like the National Institutes of Health, with 6-and-7-figure Grants (funding: $32 Billion/year) to explore POIS in the company of research on major illnesses, such as cancer.

This rarely happens as a first step.

So we are on a journey to prove ourselves as being worthy of major research *after* a first study is reputably published and will hopefully garner major medical attention.

Quantum’s recent announcement of our now having attained 750+ registered POISers at the forum made a very good impression at NORD. We look serious!

« Last Edit: January 31, 2019, 08:59:53 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

fernab

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #86 on: January 31, 2019, 11:27:58 AM »
Those are good news!

demografx

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #87 on: January 31, 2019, 11:35:23 AM »
Yes! Thank you, fernab!
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: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #88 on: February 01, 2019, 10:03:04 AM »

Our POIS Research Team & Project

https://rarediseases.org/for-clinicians-and-researchers/research-opportunities/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

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.
« Last Edit: February 04, 2019, 09:25:30 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

Nas

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #89 on: February 01, 2019, 11:12:59 AM »


Project Title:                                    Autonomic, endocrine, and immune mediators of Post-Orgasmic Illness Syndrome


Exactly what we need!