Author Topic: Our New RFP ( Request For Proposal) for the new study is out !  (Read 55856 times)

fernab

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #60 on: April 27, 2018, 06:12:21 AM »
Hi,

I have recently contacted a medicine university in my country, were showed me interest in the NORD fund for researching on POIS. I sended them the RFP as well as the recent reminder about the May 7.

Maybe Medicine Universities is a good place to distribute the RFP.

fernab.

demografx

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #61 on: April 27, 2018, 07:58:33 AM »
Hi,

I have recently contacted a medicine university in my country, were showed me interest in the NORD fund for researching on POIS. I sended them the RFP as well as the recent reminder about the May 7.

Maybe Medicine Universities is a good place to distribute the RFP.

fernab.


Thank you, fernab, for posting about this.

It is very important.

For all of us.

We crowd-funded amongst ourselves (POISCenter members!): $31,000++ for this project.

Amazing!

So let’s finally get ourselves cured! We can’t do it alone, without competent, POIS-dedicated medical research!

Thanks for letting me whine ;D


ps - send out the RFP! Make our money do MORE!
https://rarediseases.org/wp-content/uploads/2014/11/NORD_RFP_POIS.docx

Or this shorter link/url:
https://tinyurl.com/y96dnkmq

THANK YOU, EVERYONE
demo



« Last Edit: April 27, 2018, 04:47:58 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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« Last Edit: April 27, 2018, 03:35:23 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 #63 on: April 27, 2018, 03:31:49 PM »
would it be okay to just send messages to random local doctor.


Yes!

Thank you, certainlypois2!


« Last Edit: April 27, 2018, 04:09:21 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 #64 on: April 27, 2018, 03:55:38 PM »

I think we all can do something to change a bit this
[sluggish POIS researcher recruitment] situation.

It is somehow also our responsibility.

What do you think about this?


Yes it is!!!
« Last Edit: April 27, 2018, 04:05:36 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 #65 on: April 27, 2018, 03:57:44 PM »
My personal experience is that a researcher can be found successfully by hearing directly from...a POIS sufferer!

Not just from NORD.


« Last Edit: April 27, 2018, 04:03:04 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 #66 on: April 27, 2018, 06:36:57 PM »
I sent this today to my GP (who is influential. He was the Chief Medical Officer at the US Olympics Games)

Dear Dr G,

I hope you’re well.

I continue to benefit greatly from your treatment plan that I implemented with you about 8 years ago.

Perhaps you can help me with furthering the research on Post-Orgasmic Illness Syndrome?

I’ve attached a $31,000 grant description which I would hope you can pass along to your colleagues.

Any feedback from you, Dr G, to help this along would be GREATLY appreciated!

Best wishes,

[demo]
https://rarediseases.org/wp-content/uploads/2014/11/NORD_RFP_POIS.docx



« Last Edit: April 28, 2018, 12:46:22 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: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #67 on: April 28, 2018, 01:45:42 AM »


Maybe Medical Universities are a good place to distribute the RFP.


Yes!

Excellent suggestion!


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 #68 on: October 26, 2018, 06:26:47 PM »

IMPORTANT ANNOUNCEMENT


I just checked in with NORD - we're still on track! 


NORD's MAC (Scientific & Medical Advisory Committee) 

https://tinyurl.com/y86fwt4t

is now reviewing the full POIS study proposals from

Research Teams and they hope to announce our $31,000

POIS Research Grant awardee by the end of the year!



Thank you again, magnificent POIS donor$!


« Last Edit: October 26, 2018, 10:38:50 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

certainlypois2

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #69 on: October 27, 2018, 02:49:44 PM »
Nice news

fernab

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #70 on: October 27, 2018, 03:07:59 PM »
Yes, very good!

I was recently trying to contact a researcher I have been un contact with before summer. But, unfortunately, I could not contact him again. Neither by phone nor by email.

Very busy? Lack of interest? ... I do not know with certainty which of the two is the problem ... but at least I tryed everything I could.... Again, reading this is very good news. We need it very much!

demografx

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #71 on: October 27, 2018, 07:55:51 PM »
Thank you, certainlypois2 and 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 #72 on: December 04, 2018, 09:05:15 PM »
I visited today an important urologist in my country. And also told him about the NORD RFP. He told me he knows NORD. But unfortunatelly, he also told me he is very occupied to do anything right now. He also knows a few things about POIS. He told me to try a drug to force retrograd ejaculations. That means, seminal liquid don't gets out directlly through the urethra but internally through the bladder. He wants me to test if this way I don't develop the POIS symtoms.

Hi Fernhab.  He must have prescribed you an alpha-1 blocker such as Flomas/tamsulosin.  I would be interested to know what results you get with this, if you try it.

I tried it manually, with a technique promulgated by Mantak Chia.

It didn’t work. My POIS was as bad as ever.
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 #73 on: December 13, 2018, 11:58:39 AM »
NORD POIS Research Grant news:

NORD is still planning to have the final POIS Research Grant awardee decision by the end of the month, but it is of course possible that the timeline will shift into January. 

We are close!

Best wishes for the Holidays, everyone!
Demo



« Last Edit: December 13, 2018, 12:01:44 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 #74 on: December 18, 2018, 06:10:03 PM »

Just received

“Congratulations to all of us

from NORD

for reaching 750+ Members!!”


« Last Edit: December 18, 2018, 07:52:03 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 #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.