Author Topic: Free Flow Discussion about POIS  (Read 582507 times)

Vincent M

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Re: This may seem like a familiar place.
« Reply #735 on: February 13, 2013, 03:17:06 PM »
In addition we could attempt to compile more data on the location of our members. Perhaps those of us who don't want to reveal what state or city we're near could pm that info to mat780 if he's able to add changes to his POIS map, which is located here: https://sites.google.com/site/poiswebsite/pois-map

We have the data Mellivora collected on which countries we're in as well which could be useful. That list of our #s by country is at this thread and in case anyone wants to add their country who hasn't yet they can post it here: http://poiscenter.com/forums/index.php?topic=299.msg3783#msg3783

So far it looks like we have 34 members' country info and 28 members on the map.
« Last Edit: February 13, 2013, 03:21:14 PM by Vincent M »
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

Vincent M

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Re: This may seem like a familiar place.
« Reply #736 on: February 13, 2013, 06:22:07 PM »
I was reading over the NORD research fund program thread and now I see that the research study might use animal subjects instead of humans. I'm curious how likely this would be in our case. Also I'm wondering roughly when the research study would actually begin, now that we've basically reached the minimum fund requirement.
« Last Edit: February 13, 2013, 06:26:33 PM by Vincent M »
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

demografx

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Re: This may seem like a familiar place.
« Reply #737 on: February 13, 2013, 09:15:11 PM »
I was reading over the NORD research fund program thread and now I see that the research study might use animal subjects instead of humans. I'm curious how likely this would be in our case. Also I'm wondering roughly when the research study would actually begin, now that we've basically reached the minimum fund requirement.

Interesting question for Stef, Vince
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: This may seem like a familiar place.
« Reply #738 on: February 13, 2013, 09:17:05 PM »

THANK YOU DAVEMAN
THANK  YOU STEF

IT WOULDN'T HAVE HAPPENED WITHOUT YOU!!
« Last Edit: February 15, 2013, 09:05:38 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

LAPOISSE

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Re: This may seem like a familiar place.
« Reply #739 on: February 14, 2013, 03:51:08 AM »
To save some time(and money) should' t we set up some statistic study to help researcher of NORD ?

We could organise informations like :

-who we are, any particular signs, any past/curent desease, family, genetic,
-which symptoms/duration/ severity
-what helps/make symptoms worse
-recurent anomalies in blood test
-anything else?

I know we answered to something comparable for some spanish research...Maybe we can have some result?

Anyways, I'm s?re it's a quite important base for a research especialy if we are numerous to answer(like 100 persons)
We could also show th? result to our docs, Maybe one of them can also find a mysterious point we have all in common that nobody noticed
 so far...
Anybody smart with computer to do a quick sharable questionary?

Daveman

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Re: This may seem like a familiar place.
« Reply #740 on: February 14, 2013, 06:43:25 AM »
To save some time(and money) should' t we set up some statistic study to help researcher of NORD ?

We could organise informations like :

-who we are, any particular signs, any past/curent desease, family, genetic,
-which symptoms/duration/ severity
-what helps/make symptoms worse
-recurent anomalies in blood test
-anything else?

I know we answered to something comparable for some spanish research...Maybe we can have some result?

Anyways, I'm s?re it's a quite important base for a research especialy if we are numerous to answer(like 100 persons)
We could also show th? result to our docs, Maybe one of them can also find a mysterious point we have all in common that nobody noticed
 so far...
Anybody smart with computer to do a quick sharable questionary?

We've attempted a couple of surveys in the past, for this very reason, try to get information together for researchers beforehand, so they are not spending the research money to do it all themselves.

Our best effort got 33 responses. So it sounds like a good idea, but difficult to implement.

I don't know, perhaps with the research being certain, we could get a better response!

And actually we are still not "officially" over the minimum, but practically we are. We still have to finalize sponsorship commitments etc. but that's all really a matter of "paperwork".

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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Re: This may seem like a familiar place.
« Reply #741 on: February 14, 2013, 05:08:32 PM »
THANK YOU DAVEMAN
THANK  YOU STEF

IT WOULDN'T HAVE HAPPENED WITHOUT YOU

Demografx -- I'd say that you played a rather HUGE roll in making this happen. :-)  You're a wonderful motivator!
« Last Edit: February 15, 2013, 11:52:21 PM by demografx »

demografx

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Re: This may seem like a familiar place.
« Reply #742 on: February 14, 2013, 06:34:21 PM »
Thanks for the Valentine's Day sentiment, Stef!

xo
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

Stef

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Re: This may seem like a familiar place.
« Reply #743 on: February 14, 2013, 06:40:50 PM »
I was reading over the NORD research fund program thread and now I see that the research study might use animal subjects instead of humans. I'm curious how likely this would be in our case. Also I'm wondering roughly when the research study would actually begin, now that we've basically reached the minimum fund requirement.

Interesting question for Stef, Vince

Hello Vincent Marcus and Everyone!

I'll answer your questions as concisely as possible.

NORD's research grant program does sponsor studies with animals ("pre-clinical") and with human studies ("clinical").  

Many disorders really do need to be studied in animals first.

For example, if there is a known genetic defect (which would have first been identified from human patients), scientists will create a genetically-engineered mouse (or monkey, or even a dog -- there are specific biological reasons as to what type of animal is best). Those animals become the basis for later clinical trials in humans. The animals are bred with the faulty gene, and then studies can be done on the animals to try to find the best way to correct that gene -- or to provide the missing protein or an enzyme to reverse the condition.  

(This just happened with a NORD grant, involving a horrendous neurological condition.  NORD's MAC awarded the same researcher from Northwestern University four grants -- four years in a row (very unusual!).  They knew he was on to something.  His study, which also involved his co-investigators, was recently published -- they were able to reverse that terrible disease in the mouse models that were bred using a specific medication! The lead researcher was Dr. Puneet Opal -- here's a press release about that study, described as "ground-breaking." http://www.sciencedaily.com/releases/2011/10/111016132040.htm.)

Clinical trials of that drug in humans with this condition will be starting within the year. It really is ground-breaking!

But with POIS -- nothing is known scientifically.  The offending agent(s) that cause such misery are a complete mystery. Possibilities include an auto-immune reaction, an allergy, a neurological condition, a urological condition, a genetic mutation, etc.  The possibilities are endless.

(Although I think gynecology can be ruled out). :-)

So the first step would likely be to try to identify what is causing the cascade of overwhelming POIS symptoms -- and how does it get into the circulatory system in the first place? Semen should only exist (biologically-speaking) within a man's genital tract -- it starts in the prostate and leaves through the tip of the penis.  This is supposed to be an air-tight system with no barrier leaks -- semen should go nowhere but out!

I suspect that your study will first involve men with POIS, along with control subjects (men without POIS).  You likely will not need to travel to the country where the research will be done if "only" tissue specimens are needed. All sorts of human tissues -- blood, semen, saliva -- even skin and hair -- can be specially shipped to the researcher's lab even when the lab is in another country across the sea.  And-- the cost of all that is usually picked up by the researcher's lab.

VM -- I'm only guessing here, but I'm inclined to think that this research grant will involve human samples (at the least) and possibly direct, one-on-one human contact with the researcher. If any human tissue is involved it is referred to as a "clinical" study, just FYI.

If I am wrong -- that this study will focus on an animal model of some sort (again, I would be surprised, but I'm not a scientist and not a member of our MAC) -- this is what I want to impart to all of you.  Trust the process!  

I can't stress this enough.  NORD's MAC will be your absolute best advocates.  Demo and daveman will compile a list of the most major symptoms and the remedies that have been helpful, from the data on this forum site. Our MAC will appreciate this input fully because there is really nothing in the scientific literature to adequately describe the numerous symptoms of post-orgasmic illness syndrome -- which -- based on some of your posts -- don't only occur post-orgasmically.

The study will be posted in mid-March 2013, then a very laborious and formalized process takes place over a nine-month period.  Our MAC will gradually weed out those applicants whose proposals don't have enough scientific merit or potential.  The award recipient will be determined by our MAC in mid-late November, 2013.  It's a long process -- but there is NO OTHER WAY TO DO IT.  

In the meantime -- here's some unsolicited advice which just occurred to me...

There have been a few times when there have been tied scores between the two best researchers for a particular study.  Our MAC will discuss these at length -- and often won't/can't budge on their individual scores, despite these open discussions. I've been in on every single teleconference for the past eight years -- and I know that they do this 100% seriously, with utmost dedication and ethically (and for free!).

So, my suggestion --> if you men can afford to kick in a bit of extra money for your grant -- do it!  I have a sense that there will be numerous, excellent applicants for your one grant -- which will increase the chances of tied scores -- ending up with you having two researchers and two entirely separate grants!  So far, every time this has happened (3-4 times), the researchers have ALWAYS been thrilled to receive the funding -- even if it's reduced to half  of the the original amount.  They end up making up the difference from other resources within their institutions.  Our MAC checks everything, including what other resources may be available to the researcher and his team.

But if you men can't afford to kick in some extra money, it's OK!!!  It all works out, so I don't want any of you to worry about donating extra money! It simply just occurred to me -- the tied-score possibility and -- best of all -- two, separate grants!!!!! I HOPE THAT HAPPENS!!!

So -- that's my concise answer. :-)

Stef
 
« Last Edit: February 16, 2013, 10:58:17 PM by nordnurse »

demografx

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Re: This may seem like a familiar place.
« Reply #744 on: February 14, 2013, 10:23:08 PM »
Dear Stef,

Thank you for your Perpetual Illumination!

Appreciative-demo
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

Vincent M

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Re: This may seem like a familiar place.
« Reply #745 on: February 15, 2013, 08:11:07 PM »
Thanks for your reply to my questions, Stef, and for giving us a heads up about the possibility of a tie between award recipients.
« Last Edit: February 15, 2013, 09:20:44 PM by Vincent M »
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

demografx

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Re: This may seem like a familiar place.
« Reply #746 on: February 16, 2013, 12:02:10 AM »

[To study POIS]... I think gynecology can be ruled out. :-)


 ;D ;D ;D
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: This may seem like a familiar place.
« Reply #747 on: February 16, 2013, 11:43:48 AM »
LAPOISSE, thank you for responsibly pointing out our need to save time and money!

I've been forum-involved since 2007 and I think we have some good 6 years of data for NORD's selected researchers -- from hundreds of sufferers, searchable - and organized to some degree, such as B_Jim's fascinating compilation of 400+ POIS cases. This should help get more mileage for our $$. So your suggestions and spirit are on the right track. Thanks.

Our resources - which we'll share with NORD's selected researchers - are found at our Welcome Page:
http://poiscenter.com/forums/index.php?topic=1.msg1#msg1

« Last Edit: February 16, 2013, 11:54:01 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: This may seem like a familiar place.
« Reply #748 on: February 17, 2013, 12:10:44 AM »

Thank you, Guthrie!! $500 in donation$ today!!
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: This may seem like a familiar place.
« Reply #749 on: February 17, 2013, 12:12:51 AM »

Thank you, Anonymous Donor!! $300 in donation$ today!!
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