Post Orgasmic Illness Syndrome (P.O.I.S.)
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Stef
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« : May 28, 2011, 11:07:09 PM »

Hello All,

I've been in touch with demografx and Daveman about the need for solid, objective research on POIS.  They both felt it was appropriate for me to provide some input about this to the group.

POIS is one of those rare disorders that is really ripe for research.  Because of the very brave efforts of you men (I mean this sincerely) to post data, describe symptoms graphically, report on possible antidotes, etc, and Animus' taking the lead on starting to raise public awareness through the TLC program, I think the next logical step is starting a true research grant fund.

POIS, which I had never heard of before demografx wrote to NORD about it, is an awful, dramatically life-altering disorder. From what I've read on both forums, POIS can be seriously disabling for anyone suffering from it, making it very difficult to earn a living, engage fully in activities of every-day life, and can cause countless sick days. The depression and other psychiatric symptoms that occur seem almost normal, given the situation, but they may even be part of the effects of the disorder, itself.

But I am willing to bet that the solution(s), pharmaceutical or otherwise, will be found sooner rather than later, once more solid research is undertaken.

As you all know, there is a pitifully small amount of published research on this disorder.  You men are going to have to change that!

The cold, hard truth is that most research for rare disorders needs to start as a "grassroots effort." Groups (or--individuals) need to raise the initial funds -- government and/or private industry are not yet interested, as there is practically nothing published to capture their interest.  They don't know you yet or what you are going through.

The big money for funding of research on rare disorders comes after some solid, basic research is undertaken in the form of small (relatively small) grants awarded to honest, highly-respected, impeccable researchers. That's the truth, plain and simple.

NORD has a 100% above-board honest, objective, very formalized research grant program.  It's a "seed grant" program, meaning that these grants are for the initial basic research that will "plant the seed" for major future funding from government or private industry.  However, there is always a chance that a seed grant, itself, will give rise to a treatment -- it has already happened within NORD's grant program.

As I've told demografx and Daveman, I don't care (meant in the most respectful terms) where you fund your research.  But I do really care that you begin the process of collecting funds, and giving them to a reputable place. A a RN working for a great organization that respects the individual -- and that knows about the isolation and misery that rare disorders cause -- I think you would do well to consider raising funds for a POIS research grant through NORD.

The basics are as follows:

Minimum cost to offer a research grant -- $33,500 US. ($30,000 goes to the researcher, and $3,500 goes to NORD's administrative fees.)

NORD is a not-for-profit organization (a 501(c)(3) -- all donations are tax-deductible for the donor.

NORD does not profit from the grant program.  In fact, we barely break even on the expenses of administering a grant.

NORD does all the work in finding potential researchers of impeccable quality, and then monitoring the progress and making the payments. The money is held until on-going requirements are met by the researcher.  Our Medical Advisory Committee (MAC), each a researcher in his/her own right, choose the award recipient.  The donors don't have a say in who gets the award, but they do have input on how to phrase the goals of the research.

Here is a link to NORD's research grant policy from our website -- http://www.rarediseases.org/medical-professionals/research-grants. I encourage you each to go to the link and read about our program.  And I will be happy to answer individual questions from anyone.  You can reach me directly at rn@rarediseases.org or research@rarediseases.org.

This is something that needs discussion amongst yourselves, as a group.  

I believe that POIS is a medical condition that would be of great interest to researchers, especially those who specialize in the area of immunology and autoimmunity.  In addition--and I know this might be a bit controversial but am just throwing it out there -- it's unclear whether "post-orgasmic illness syndrome" is the best name for this syndrome, since apparently an ejaculation is not always necessary to go under the spell of POIS. "autologous semen illness," or "autoimmune seminal fluid syndrome," may be a more succint term. Just a thought that I wanted to share.

Please discuss this amongst yourselves.  Use PMs, or--discuss it openly.  I think that POIS time has come--you men deserve the respect of dedicated, highly-regarded researchers who also have that magic ingredient -- compassion.

Best to everyone,
Stefanie Putkowski, RN
NORD



« : June 07, 2011, 09:21:51 AM Daveman »
Willem
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« #1 : May 29, 2011, 12:14:00 AM »

Hi Stefanie,

Thanks for the notification.  That's very interesting.  Just for our understanding, what would be the "deliverable".  Is it the type of thing where they will characterize POIS sufferers and their symptoms etc. or would it involve a medical evaluation of a number of us?  How would it differ from Dr. Waldinger's papers that characterize the spectrum of experiences and propose a treatment.  Thanks.

Willem
B_Daniel
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« #2 : May 29, 2011, 03:01:21 AM »

Stefanie, I've seen your latest posts on NSF and want to thank you for the work you're doing.  What's the story behind Dr. Dimov agreeing to evaluate men with POIS?  Is this part of the POIS research grant you've been writing about, or is he doing this on his own will? 

A few ppl have discussed raising some funds.  I don't mind contributing some money towards high quality research, if we could agree upon the right thing to study.  If a researcher had a legitimate chance of being able to figure out what part of the seminal fluid we are allergic to, and narrowing down which gland is responsible for the production of this substance, we'd be taking a giant leap forward and I would love to contribute some $.  What's the status of our "fund", where do we plan to put this $, and why are we not fundraising on NSF more vigorously?
Daveman
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« #3 : May 29, 2011, 10:40:50 AM »

Hi Stefanie,

Thanks for the notification.  That's very interesting.  Just for our understanding, what would be the "deliverable".  Is it the type of thing where they will characterize POIS sufferers and their symptoms etc. or would it involve a medical evaluation of a number of us?  How would it differ from Dr. Waldinger's papers that characterize the spectrum of experiences and propose a treatment.  Thanks.

Willem

We basically design the deliverable, if I understand it correctly. There's a RFP (Request for Proposal). The donor, writes the specifications, and researchers bid on the spec. Obviously if the RFP doesn't attract ANY attention, then you'd probably have to redirect your goals. I think there's only one offering of RFPs per year, so each re-write is a year's delay. So it behooves one to target the RFP, the best fit between what's out there and what one is looking for. I think that conditions run in our favour, because I feel we are "close" the potential thread of research in POIS.

We would be best to point to a best fit to establish proof positive cause at least. Then a second push (if needed) would lead to cure.

The researcher in the end would decide, if he would use information of our population or not. I figure he'd be nuts not to.

This is my understanding from conversations with Stefanie up until now. I'm sure she'll be checking in to correct me if I'm wrong or to elucidate further if I've missed something crucial.


WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!
Stef
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: 379



« #4 : May 29, 2011, 11:10:05 AM »

Hi Willem and B_Daniel,

If there is a way to answer individual posts here, Daveman will let me know.  For now, I'm going to combine your questions into one long response, hoping that it covers questions of others as well.

Willem -- Regarding the "deliverable" of a POIS research grant through NORD's grant program  -- it's an impossible question to answer -- but also a perfect question of you to ask.
The immediate deliverable all depends on the study that NORD's MAC (Medical Advisory Committee) ultimately chooses, so the deliverable might not be immediate--or, it could be immediate. (I hate answering questions in this manner--but it's the truth, so there's no other way to answer it.)
I can't speak for the MAC, but can advise that they are -- without question -- completely trustworthy, objective, vastly experienced, and 100% ethical. They KNOW how to judge a grant's potential, having published their own research and being seasoned scientific/medical researchers. Based on the six years I've spent in their presence, they choose grants that have the highest potential and scientific merit as related to the specific disorder. They score each grant on their own, then through teleconferences that I'm fortunately involved in (it is absolutely fascinating and is why I know how they operate and why I unconditionally trust their judgement), they openly discuss their reasons for scoring as they did.  These discussion sometimes end up in a MAC member changing his/her score--which is a good thing--because shared knowledge is key.
Incidentally and for the record, NORD's MAC does their work for NORD on a totally voluntary basis.  While they are each practicing clinicians, they are not paid for their NORD work, there is no money exchanged.  They are pure researchers, and are in step with NORD's mission to help find treatments and/or cures for rare disorders.
 
For a POIS grant, as for every grant, they will base their scoring system (the same one used by NIH -- National Institutes for Health) on (1) the scientific merit of the study as it relates to a treatment or cure for POIS and (2) the potential for future research funds from large corporations (i.e. pharmaceutical companies) or NIH grants.
Because of how we would phrase the "RFP" (Request for Proposal--a term you should all get familiar with!) we would attract an array of researchers from the fields of immunology, allergy, autoimmune disorders, endocrinology, urology, and sexual medicine--probably other fields also. Some of them might be undertaking "molecular" studies, meaning in very basic terms -- identifying the problem, (i.e.what exactly is going on here?).  Is there a protein, an enzyme, an immunoglobulin, etc, that seems to be setting off this cascade of events. Or--what are the blood tests really showing --is there a hormonal imbalance that suddenly occurs, an immune reaction, allergic reaction, etc? Or, is there a gap/opening in the seminal fluid-producing system and, if so, how to overcome this?) This minutiae is what solves the mystery and leads to the treatment.
The initial research could be on lab rats (or zebra fish, dogs, etc.). -- This could seem disappointing-- but should not be! Often, the most important research is to actually create an animal model that develops POIS and can then be studied. This is how most disease treatments are discovered.
On the other hand, there could be an immediate "deliverable."  If the study involves human subjects, there is always a chance of hitting the nail on the head quickly. It has happened already within our grant program--very dramatically.  It all depends on the study project. If it involved human subjects, my guess is that you -- or at least your specimens -- would be an extremely important part of that type of study.

One big difference between a NORD grant and Dr. Waldinger's study is that there would be a control group if a treatment were tested on humans.  There is absolutely no way that our MAC would award these precious funds without a control group involved if the study was for a treatment or testing of human subjects. (This is not to disparage Dr. Waldinger in any way -- in fact, he would be welcome to apply for your grant if he wished to--we would invite him to apply--along with many, many others)

Lastly, the grant is open to international as well as American researchers.  Wanted to make that clear to you all.

B_Daniel -- Dr. Dimov and Dr. Bewtra are starting their own preliminary research, independent of NORD. I'd read a blurb by
Dr. Dimov about POIS through a google alert, and decided to contact him to ask if he was interested in evaluating men from your forum. (This is a big part of what I do at NORD--finding specialists for patients).

They are the kind of researchers for whom we have the greatest respect, because they show evidence of true dedication and interest in the disorder.  The evidence is in the time and funds they have already used from what is probably a limited budget. (They are from major research institutions where there is likely a small amount of funding for their research, and I seriously doubt that either of them would be at these institutions, Creighton University and University of Chicago, unless there was a budget that at least allows them to do some independent research. But that small budget will only take them so far.)

NORD has nothing whatsoever to do with the preliminary research being carried out by Drs. Dimov and Bewtra. It was simply a lucky break that they came though via a google alert.

FYI, regardless of the researcher or his/her institution, part of their NORD grant application specifically calls for a detailed explanation of why NORD's funds (which are your funds!) are needed by them.

As I explained to demografx and Daveman, and this is a major point that everyone needs to be comfortable with--you will not have a direct say in the direction of the research or in who would be awarded the grant.  This is all determined by NORD's MAC.  However, the RFP will be explicit about the goals of the study, and you can definitely have input on those goals.  Since I've already explained this part to demografx and Daveman, please ask them to share anything I've written to them with you.  There are no secrets about this.

B_Daniel--you've asked a GREAT question about "the status of your fund" and why your group is "not fund raising more vigorously." There is no fund yet at NORD for POIS--and I don't know if there are any POIS funds elsewhere. You men, your loved ones, friends, etc., will need to start donating and fund raising specifically for a POIS fund at NORD (if that's where you all ultimately decide to put your funds).  Donations can be made online with a charge card, via postal mail by check, or via telephone directly to us (no middle man involved--you will speak with a human being--not a voice message system, at NORD) with a charge card. The website link that I provided explains that.

As I've mentioned already, I have a sense that POIS is a misnomer (but I could easily be incorrect about this). I would be willing to ask our MAC their opinion as to what, exactly, to name your fund. The RFP could use the term, "POIS" within it, but this seems to be more than "post-orgasmic illness syndrome."  I don't know who came up with the original name of this disorder, but it might benefit by a name change for the subject of a research grant.  It's not my call, and please don't be concerned about that now.

Since the funds would come from your group, your friends, etc -- the POIS forum would be listed in the title of the RFP.
It would be appear something like this: "NORD, with Funding by the Patient Group, POISCenter.com, is offering a Request for Proposals entitled, "___________________"  We (you, our MAC, and I) would figure out the BEST title for your grant.

I hope that answers the questions that have been posted, and then some.  This requires discussion among yourselves.  If you are not comfortable with NORD's grant program, it's OK! Please know that this is fine--not everyone likes our program, because they want more of a say in the decision-making process. There is no right or wrong answer on this.

 Nonetheless, research funds are needed, regardless of where to put them, and they need to start with you!



demografx
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« #5 : May 30, 2011, 10:28:30 AM »

About a year ago or so (2?), about half-a-dozen NSF-POIS members PUBLICLY  pledged around $6,000.

Since that was done with NO idea where to apply it, it seems encouraging that we could raise much more!!

Vandemolen, wonderful idea about DONOR ANONYMITY!
« : May 30, 2011, 10:32:20 AM demografx »

Usually have major 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 associated with it.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business.
Daveman
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« #6 : May 30, 2011, 11:02:23 AM »

Another good thing about the NORD program, aside from the anonymity, is that it's open to the public for donation once the account is openned.

We can open a research fund with $10, and it's there for the world to contribute to. They have much more exposure than we do. Even someone who goes there for other reasons could find out about us there and help out. So inasmcuh as we need to cought up, we don't have to be the only ones.


WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!
Daveman
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Hero Member
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: 1633



« #7 : May 30, 2011, 08:33:01 PM »

Another good thing about the NORD program, aside from the anonymity, is that it's open to the public for donation once the account is openned.

We can open a research fund with $10, and it's there for the world to contribute to. They have much more exposure than we do. Even someone who goes there for other reasons could find out about us there and help out. So inasmcuh as we need to cought up, we don't have to be the only ones.


I clicked on the NORD-site. But is NOT possible to donate anonymous.

They ask for names and stuff, but I think that's just for internal accounting reason. I looked around the site a little and couldn't find a place that names the donors, so I don't think they're public. I'll verify though.
« : May 30, 2011, 08:36:08 PM Daveman »

WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!
Daveman
Administrator
Hero Member
*****
: 1633



« #8 : May 30, 2011, 08:45:19 PM »

Another good thing about the NORD program, aside from the anonymity, is that it's open to the public for donation once the account is openned.

We can open a research fund with $10, and it's there for the world to contribute to. They have much more exposure than we do. Even someone who goes there for other reasons could find out about us there and help out. So inasmcuh as we need to cought up, we don't have to be the only ones.


How did you organize that? Did they make over the money on your personal account? Or is there already a POIS-bankaccount? And is the 6000 dollars already spend?

I think a POIS-account, trough NORD or in another way, must be opened very quick. So we can fund money. It would be wise if the money goes to dr. Waldinger and his team. They have a head start. So he can make a bigger team and things go faster.

I guess you probably are refering to Demo's post above right, I'll leave it to him to answer. Although I don;t think that any money ever changed hands, just offers.

BTW, Dr. Waldinger could apply to respond to the same NORD fund. It's open to ALL researchers in the field.


WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!
Ccconfucius
Guest


« #9 : May 30, 2011, 09:01:48 PM »

This is definitely right time to do this, we have been talking about it for a while, actually more like demo bringing it up.
I believe we should have two pots, one for nord and another for dr waldinger, we can have dr waldinger doing his thing and have a different researcher looking at pois from a different perspective. 
B_Daniel
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« #10 : May 31, 2011, 01:43:28 AM »

If there's no cure for this thing so be it.  But to not know exactly what is causing our symptoms, how it's doing it, and why to us, just doesn't sit right with me.  Our forum has advanced such a long way, but we've really relied upon Dr. Ws and other's research to get us there.  We need more research to get to the next level, and in my opinion, now's the time.  

Personally, I'd like to go with NORD.  Stefanie's passion to help us gives me comfort that this process will be managed the right way.  Through her efforts reaching out to the scientific community, she's proven how valuable she is to us, and with some money behind her, she's sure to get us even more attention / success.  

There are going to be lots of little issues, such as anonymity in donations and what exactly our goals will be.  But we've got really bright, hardworking individuals in our forum who can easily facilitate the write-up of the RFP / goals of this research and sort out the other minor details.  I've been putting a lot of thought into this and I'd like to pledge a $5,000 donation.  This research would mean a lot to all of us, and together I'm hopeful we can raise enough money to attract talented, passionate researchers and get this seed grant program started.  My only stipulation is that if we can't get research approved through NORD during a reasonable time-frame, that the money be returned.  Let's get this fund set up!  
Vincent M
Sr. Member
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Physical overshadows cognitive symptoms. 10yrs.


« #11 : May 31, 2011, 01:56:42 AM »

Thanks for all your help, Nurse Stefanie. You're an extremely valuable asset to us.


As I explained to demografx and Daveman, and this is a major point that everyone needs to be comfortable with--you will not have a direct say in the direction of the research or in who would be awarded the grant.  This is all determined by NORD's MAC.  However, the RFP will be explicit about the goals of the study, and you can definitely have input on those goals.  Since I've already explained this part to demografx and Daveman, please ask them to share anything I've written to them with you.  There are no secrets about this.

I see this as possibly being an issue. We wouldn't want to gather all this money and have some researcher use it to look for psychological causes of POIS (when there are none), thinking all of our symptoms are made up in our heads. For this reason I agree with ccConfucious in that we should start two separate donation funds: One for a research grant through NORD and one directly for Dr. Waldinger and his team if possible. Then our members would have a choice in where they want their donations to go. In the end if Dr. Waldinger for some reason couldn't take our money then the members who donated to him could put their money towards the NORD fund instead if they wanted.

And damn, B Daniel, if you're serious about that $5,000 then thank you man lol. I don't know if I can donate anything. I'm being supported by my family atm and they're pretty strapped for cash. I'll ask my mom.

Also we should let the Sexual Exhaustion forum know about this research grant oppurtunity.
« : May 31, 2011, 02:01:37 AM Vincent Marcus »

Taking ginger tea, no wheat, fenugreek+green tea/garlic, saw palmetto, niacin, boswellia, huperzine, B complex and nutmeg. See my treatment summary post for more info: http://poiscenter.com/forums/index.php?topic=81.msg3513#msg3513
Vandemolen
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« #12 : May 31, 2011, 06:14:10 AM »

I guess you probably are refering to Demo's post above right, I'll leave it to him to answer. Although I don;t think that any money ever changed hands, just offers.

BTW, Dr. Waldinger could apply to respond to the same NORD fund. It's open to ALL researchers in the field.

Yes I was refering to Demo's post. I thought the fund was already given. But if it is open for all researchers that is better.

POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 70% less POIS. And only 1 day of POIS. Purified CBD works for me.
Ccconfucius
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« #13 : May 31, 2011, 08:34:58 PM »

I guess you probably are refering to Demo's post above right, I'll leave it to him to answer. Although I don;t think that any money ever changed hands, just offers.

BTW, Dr. Waldinger could apply to respond to the same NORD fund. It's open to ALL researchers in the field.

Yes I was refering to Demo's post. I thought the fund was already given. But if it is open for all researchers that is better.
the pledges were just verbally declared nothing has been given yet.
demografx
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« #14 : May 31, 2011, 09:10:02 PM »

From Vandemolen's post: (sorry, tech prob with my posts "jumping" when I try to reply)...

"How did you organize that [$6,000 pledged at NSF for POIS research]? Did they make over the money on your personal account? Or is there already a POIS-bankaccount? And is the 6000 dollars already spend?"

Reply: It was only pledged. Spontaneously.

"I think a POIS-account, trough NORD or in another way, must be opened very quick. So we can fund money. It would be wise if the money goes to dr. Waldinger and his team. They have a head start. So he can make a bigger team and things go faster."

Reply: Auto-immune is only one of many theories. Personally, I would like to see a comprehensive/global examination of what our Forums and other sufferers on the Internet, reported by B_Jim, have uncovered in its 10,000+ postings since 2007. This is a treasure trove of information on POIS unparalleled anywhere. And developed from hundreds of real sufferers WHOSE PRIMARY COMPLAINT IS POIS. I could be wrong, but I'm not 100% sure that the Netherlands studies consist of patients whose PRIMARY sexual-medical complaint was POIS. For example, I think that there is a disproportionately large group of people primarily suffering premature ejaculation, which may or may not reflect or be similar to/representative of our group - - or POIS sufferers as a whole.

But I like the idea of allowing possible funding of different options, depending on individual(s) preferences.
« : May 31, 2011, 09:19:30 PM demografx »

Usually have major 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 associated with it.

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