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Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6439561 times)

Offline lauracostis

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Post Orgasmic Illness Syndrome (POIS)
« Reply #14675 on: 21/09/2011 01:01:42 »
There has been a BIG slowdown in donations for our NORD POIS research fund! Only a valiant few have made donations these past few months. Below, there is a very good but typical story of how a research donation to a fund like NORD can save and greatly improve lives.

In fact, if it were not for Nordnurse (Stefanie) who works daily with rare disease causes, we would still be flailing around, thinking, scheming, supposing and inventing, to find a solution to the POIS problem.

Haven’t we seen enough doctors who don’t take us seriously? Haven’t we seen enough to see that the only ones who care are the effected themselves? Maybe we could FIND the cure ourselves, but we would have NO cooperation in implementing it without the support of some real, peer-reviewed, scientific research.

It’s beyond saying that we must support our research fund -- and must bring it to life! It is an absolutely necessary requirement. All of our effort, time, ideas and concepts are worth absolutely zero without it.

What choices do we have?  

We can sit on our haunches, waiting for the money to magically appear. Or – like other groups with rare conditions, we can take the bull by the horns.  We MUST do our part to get that basic research started!

Nordnurse sent us an inspirational story recently, and we felt that it would be a good story to share with you all–

”There's a physician on NORD's Medical Advisory Committee (MAC),
Dr. Robert Campbell, Jr -- an angel who poses as a human being here on earth. 

As a pediatric orthopedic surgeon, Dr. Campbell’s special area of interest is a group of HORRIFIC disorders that begin in infancy and childhood – called “thoracic insufficiency.”  Basically, the ribs do not grow, and the baby/child literally and inevitably suffocates to death.

When Dr. Campbell, as a new researcher, applied for a NORD research grant for thoracic insufficiency, back in the late 1980s, he knew that he would have an uphill battle.  Having had a first career as an engineer, his proposal was unusual, definitely “outside the box.”  Based in solid medicine, he proposed an idea for an expandable titanium rib – a medical device for these fatally ill children.

There were many applications for this one $30,000 grant, which had been donated in full by the desperate parents of a young child who was suffering terribly and facing certain death. NORD’s MAC liked Dr. Campbell’s proposal, despite knowing that it might be very difficult for him to get the type of future funding from government or private industry.  Despite this concern, they trusted their appraisal of his proposal’s scientific merit, and awarded that grant to him. 

The rest… as they say… is history.

Because of that first basic NORD study, Dr. Campbell later received major funding from industry.  He has since patented the titanium expandable rib, and these children no longer die a slow, miserable death.  They go on to live their lives!

The expandable titanium rib is now “The Standard of Care” for children with this disorder.

http://www.c-spanvideo.org/videoLibrary/clip.php?appid=598537344

Dr. Campbell joined NORD’s MAC as a senior attending physician and researcher about eight years ago.  He was recently honored on Capitol Hill for his unswerving work to save the lives of children with this horrible disorder (thoracic insufficiency).


Fellow POIS sufferers and comrades – we NEED that basic research – and we need those funds – NOW!  Our group focus must dramatically change – from speculation to ACTION. 

We can and should continue posting our comments, asking our questions, and sharing our experiences. But if we want a way out of the hell of POIS – which can only come from scientific research – we must walk the walk!

The next grant cycle at NORD begins in March 2012.  That gives us six moths to raise ~$30,655.  Monthly, that equates to ~ 5,100/month. That translates into ~ $50/month from 100 donors each month.

Walking the walk, taking action -- this requires EFFORT. Stefanie knows from experience at NORD that only this kind of personal effort lead to the road of a real solution.

We propose a serious pledges database, where there will be a fixed time of 30 days maximum to register your pledge.  This will provide more time over which to amortize any payments. Pledges may be made as a lump sum or divided over months to come.

We require a minimum of donors (100), as we cannot expect a few to pay the majority. Every donor will be granted a place in a VIP area on the SMF forum where all things pertaining to the grant will be discussed, and first information will be disseminated.

Upon pledging the required amount, monthly payments will be begun. Each pledge will be billed (as a formal reminder) at which point his pledge should be converted into an actual donation. Each donor will donate personally to NORD so as to (1) receive any tax deduction and/or (2) maintain anonymity (two issues not covered by other systems such as thepoint.com).

This program was devised as a means to be assertive in the implementation and follow through of the research program, to avoid extra costs and limitations imposed by outside entities and to benefit, through personal management of money and donations by each individual.

An individual thread has been opened on the SMF forum for a brief discussion of  the details of this program at http://poiscenter.com/forums/index.php?topic=213.0 Thanks for your input. The database will be generated as soon as possible.

Your friendly POIS Forum Moderators,
Demografx
Daveman


we should be sending requests for donations to organizations and private donors who give money.  One or two outside donors could easily fund the minimum amount we need to get started.  I know somewhere there are lists of organizations that allocate money to charities and medical research to people who request and solicit them.  We should start soliciting these entities ASP.
 

Offline Guthrie

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Post Orgasmic Illness Syndrome (POIS)
« Reply #14676 on: 21/09/2011 02:22:32 »
Has anyone on the forum done comparison tests between regular niacin and nicotinamide, to see if the latter has any effect on POIS?

I have been taking 1000mg Niacinamide (not Nicotinamide) and I am told it is a non-flushing type and its been working very well.... at 1000mg dose few hours before.... but I have noted that taking it daily and having O when ever seems also to work decently also.....

And I need to also say AGAIN that my brain fog left once I stopped taking caffeine, no coffee, no softdrink/soda with caffeine, no chocolate.....

However I still suffer from anger, some social withdrawl, and as long as I am on Niacinamide the all over horrible body feelings are down 70%

PS.

A new and enouraging development: when I read POIS-SUFFERER's response, I was somewhat surprised.  Niacinamide (= Nicotinamide) is a non-flushing form of niacin.  So, since we had generally had been attributing the success of both niacin and XN to its flushing properties, then one would think that the non-flushing form wouldn't be effective for POIS.  But, it apparently *was* working for POIS-SUFFERER.  So, what to make of this seeming contradiction?

I said to myself, "Hmmm, what would Galileo do?"  So, I went out and got a bottle of Niacinamide (which is a non-flushing form -- not the same as 'slow release niacin', which *is* flushing, but has a spread-out, rather than concentrated effect).  Last night, I took two 550 mg capsules, for a total of 1100 mg.  There was no flush whatsoever.  Two and a half hours after taking the capsules, I had an O.  The next day: essentially 90% POIS-free!!!  Possibly even 95%! And, this was in terms of basically all of my normal POIS symptoms: brain fog, mood, concentration, energy.  Definitely a noticeable difference even from the effect of my last trial, with 300 mg of the regular (flushing) variety of niacin, and which had worked pretty well (80-85%).  It may be that the overall amount (1100 mg vs. 300 mg) had something to do with it as well.

So, while I'll have to test it again to rule out one-time effect or placebo, the non-flushing Niacinamide seems pretty clearly to have worked *very* well.  This seems to reconfigure our basic hypotheses about why niacin works: from this result, it would seem that it is not the flushing that makes a difference at all!  Rather, it would seem to have to be some property that regular (flushing) niacin also shares with the non-flushing variety.

So, what is that property?  Not sure at this point, but even just this result can help point us in the proper direction.  I will certainly be testing it again, and others may want to try Niacinamide/Nicotinamide to see how your results compare to the flushing variety.  In my case, it was also an added bonus not to have to experience the flush, which was often pretty uncomfortable for me with the itching/heat.

We shall see...
« Last Edit: 21/09/2011 02:25:41 by Guthrie »
 

Offline helloworld

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« Reply #14677 on: 21/09/2011 02:38:42 »
Without reiterating all the affects everyone else has that I also experience, what I've found that works consistently to speed up feeling "normal" again is blending (not juicing) the following: kale (about a cereal bowl full,) blueberries (about one handful), strawberries(4-6), 2 bananas, Hershey's cocoa (non-alkalized -- about two teaspoons,) 1 celery stalk, baby leaf spinach (about half a cereal bowl,) red globe grapes (seeded, including the seeds, about 10-15 grapes) and a half red bell pepper. I generally make about 4 full mugs full and drink it in one sitting. If you try this, be warned, your stool will be quite unpleasant the first one or two days. I had two experiment with the kale dosage, as I was feeling very nauseated/dizzy using more than one bowl the next day when I was experimenting (still doing so, but so far, this blend is working for me.) Also be careful if you're on a low-oxalic diet, spinach and kale, and the berries do have a lot of oxalic acid. Hope this helps some people.
 

Offline demografx

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« Reply #14678 on: 21/09/2011 04:11:13 »
There has been a BIG slowdown in donations for our NORD POIS research fund! Only a valiant few have made donations these past few months. Below, there is a very good but typical story of how a research donation to a fund like NORD can save and greatly improve lives.

In fact, if it were not for Nordnurse (Stefanie) who works daily with rare disease causes, we would still be flailing around, thinking, scheming, supposing and inventing, to find a solution to the POIS problem.

Haven’t we seen enough doctors who don’t take us seriously? Haven’t we seen enough to see that the only ones who care are the effected themselves? Maybe we could FIND the cure ourselves, but we would have NO cooperation in implementing it without the support of some real, peer-reviewed, scientific research.

It’s beyond saying that we must support our research fund -- and must bring it to life! It is an absolutely necessary requirement. All of our effort, time, ideas and concepts are worth absolutely zero without it.

What choices do we have?  

We can sit on our haunches, waiting for the money to magically appear. Or – like other groups with rare conditions, we can take the bull by the horns.  We MUST do our part to get that basic research started!

Nordnurse sent us an inspirational story recently, and we felt that it would be a good story to share with you all–

”There's a physician on NORD's Medical Advisory Committee (MAC),
Dr. Robert Campbell, Jr -- an angel who poses as a human being here on earth. 

As a pediatric orthopedic surgeon, Dr. Campbell’s special area of interest is a group of HORRIFIC disorders that begin in infancy and childhood – called “thoracic insufficiency.”  Basically, the ribs do not grow, and the baby/child literally and inevitably suffocates to death.

When Dr. Campbell, as a new researcher, applied for a NORD research grant for thoracic insufficiency, back in the late 1980s, he knew that he would have an uphill battle.  Having had a first career as an engineer, his proposal was unusual, definitely “outside the box.”  Based in solid medicine, he proposed an idea for an expandable titanium rib – a medical device for these fatally ill children.

There were many applications for this one $30,000 grant, which had been donated in full by the desperate parents of a young child who was suffering terribly and facing certain death. NORD’s MAC liked Dr. Campbell’s proposal, despite knowing that it might be very difficult for him to get the type of future funding from government or private industry.  Despite this concern, they trusted their appraisal of his proposal’s scientific merit, and awarded that grant to him. 

The rest… as they say… is history.

Because of that first basic NORD study, Dr. Campbell later received major funding from industry.  He has since patented the titanium expandable rib, and these children no longer die a slow, miserable death.  They go on to live their lives!

The expandable titanium rib is now “The Standard of Care” for children with this disorder.

http://www.c-spanvideo.org/videoLibrary/clip.php?appid=598537344

Dr. Campbell joined NORD’s MAC as a senior attending physician and researcher about eight years ago.  He was recently honored on Capitol Hill for his unswerving work to save the lives of children with this horrible disorder (thoracic insufficiency).


Fellow POIS sufferers and comrades – we NEED that basic research – and we need those funds – NOW!  Our group focus must dramatically change – from speculation to ACTION. 

We can and should continue posting our comments, asking our questions, and sharing our experiences. But if we want a way out of the hell of POIS – which can only come from scientific research – we must walk the walk!

The next grant cycle at NORD begins in March 2012.  That gives us six moths to raise ~$30,655.  Monthly, that equates to ~ 5,100/month. That translates into ~ $50/month from 100 donors each month.

Walking the walk, taking action -- this requires EFFORT. Stefanie knows from experience at NORD that only this kind of personal effort lead to the road of a real solution.

We propose a serious pledges database, where there will be a fixed time of 30 days maximum to register your pledge.  This will provide more time over which to amortize any payments. Pledges may be made as a lump sum or divided over months to come.

We require a minimum of donors (100), as we cannot expect a few to pay the majority. Every donor will be granted a place in a VIP area on the SMF forum where all things pertaining to the grant will be discussed, and first information will be disseminated.

Upon pledging the required amount, monthly payments will be begun. Each pledge will be billed (as a formal reminder) at which point his pledge should be converted into an actual donation. Each donor will donate personally to NORD so as to (1) receive any tax deduction and/or (2) maintain anonymity (two issues not covered by other systems such as thepoint.com).

This program was devised as a means to be assertive in the implementation and follow through of the research program, to avoid extra costs and limitations imposed by outside entities and to benefit, through personal management of money and donations by each individual.

An individual thread has been opened on the SMF forum for a brief discussion of  the details of this program at http://poiscenter.com/forums/index.php?topic=213.0 Thanks for your input. The database will be generated as soon as possible.

Your friendly POIS Forum Moderators,
Demografx
Daveman


we should be sending requests for donations to organizations and private donors who give money.  One or two outside donors could easily fund the minimum amount we need to get started.  I know somewhere there are lists of organizations that allocate money to charities and medical research to people who request and solicit them.  We should start soliciting these entities ASP.

Laurac, excellent idea! Can you take that on as a project as we pursue our own constituency?
 

Offline Itsthatskater

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« Reply #14679 on: 21/09/2011 04:38:14 »
Well guys, this is kinda sad, Pois is ruining my life, Im missing school because im so sick from it and im too embarrassed to tell the nurse whats wrong. This is ruining my life. It really sucks

I know...I also had problems with school. And now i have problems at work because of Pois. And i'm afraid to get a girlfriend because:

A) My sexual potency is very poor when i'm under Pois, nearly impotent. Does this also happen to you?

B) If she wants to have sex regulargy, i would be always in Pois.


Yeah, when im with a girl its really hard for me to last because i put myself on a dry spell because of POIS. I have a doctors appointment coming up and im going to tell her all bout Pois and what she thinks can help, its worth a shot.

It sucks, I suffer from Pois for about 48 hours and then im good. So i mean i dont think I would have to worry that much but i definitly think Allergy medicines and stuff like that helps.
 

Offline POIS-SUFFERER

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« Reply #14680 on: 21/09/2011 06:24:06 »
Has anyone on the forum done comparison tests between regular niacin and nicotinamide, to see if the latter has any effect on POIS?

I have been taking 1000mg Niacinamide (not Nicotinamide) and I am told it is a non-flushing type and its been working very well.... at 1000mg dose few hours before.... but I have noted that taking it daily and having O when ever seems also to work decently also.....

And I need to also say AGAIN that my brain fog left once I stopped taking caffeine, no coffee, no softdrink/soda with caffeine, no chocolate.....

However I still suffer from anger, some social withdrawl, and as long as I am on Niacinamide the all over horrible body feelings are down 70%

PS.

A new and enouraging development: when I read POIS-SUFFERER's response, I was somewhat surprised.  Niacinamide (= Nicotinamide) is a non-flushing form of niacin.  So, since we had generally had been attributing the success of both niacin and XN to its flushing properties, then one would think that the non-flushing form wouldn't be effective for POIS.  But, it apparently *was* working for POIS-SUFFERER.  So, what to make of this seeming contradiction?

I said to myself, "Hmmm, what would Galileo do?"  So, I went out and got a bottle of Niacinamide (which is a non-flushing form -- not the same as 'slow release niacin', which *is* flushing, but has a spread-out, rather than concentrated effect).  Last night, I took two 550 mg capsules, for a total of 1100 mg.  There was no flush whatsoever.  Two and a half hours after taking the capsules, I had an O.  The next day: essentially 90% POIS-free!!!  Possibly even 95%! And, this was in terms of basically all of my normal POIS symptoms: brain fog, mood, concentration, energy.  Definitely a noticeable difference even from the effect of my last trial, with 300 mg of the regular (flushing) variety of niacin, and which had worked pretty well (80-85%).  It may be that the overall amount (1100 mg vs. 300 mg) had something to do with it as well.

So, while I'll have to test it again to rule out one-time effect or placebo, the non-flushing Niacinamide seems pretty clearly to have worked *very* well.  This seems to reconfigure our basic hypotheses about why niacin works: from this result, it would seem that it is not the flushing that makes a difference at all!  Rather, it would seem to have to be some property that regular (flushing) niacin also shares with the non-flushing variety.

So, what is that property?  Not sure at this point, but even just this result can help point us in the proper direction.  I will certainly be testing it again, and others may want to try Niacinamide/Nicotinamide to see how your results compare to the flushing variety.  In my case, it was also an added bonus not to have to experience the flush, which was often pretty uncomfortable for me with the itching/heat.

We shall see...

Yep was not lying :-) I have clearly demonstrated with myself that it is not placedo, I do not get 90-95% however, more maybe 75%, but I have never up'd the dose to 1500mg, always 1000mg. 500mg per capsule.
I have been using it for many many months, my doctor told me to try it after I described all my
"issues", I spoke of it also months ago, but no one was on the XN/B3 path yet.......

PS.
 

Offline daveman

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« Reply #14681 on: 21/09/2011 11:36:36 »
That's interesting about your doctor suggesting it!!! He must be very astute.

What type of doctor is he? Did he have any suggestions as to why you should try Niacin(amide)?

 

Offline POIS-SUFFERER

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« Reply #14682 on: 21/09/2011 18:53:11 »
That's interesting about your doctor suggesting it!!! He must be very astute.

What type of doctor is he? Did he have any suggestions as to why you should try Niacin(amide)?



Wish I could remember, it was all very complicated as I had many symptoms, but she said I had a "damp kidney"? she is a real MD but practices as a homeopath. She also tried to get my stomach acid to increase but I had to stop that due to VERY bad heartburn. I had to stop seeing here also, $135 per hour! I hope someday to have enough money to start seeing her again.

She was also very clear that I was to ONLY buy Niacinamide and not any of the others... She wrote not Niacin, not Nicotinic Acid, not the one called No Flush, not the one called extended, and not Nicotinamide. She said that Niacinamide should not cause a flush, but the "No Flush" type is not Niacinamide it another type with an added component to cause no flush.

Guthrie, you said you took 1100mg and got very good results, it would help to know your weight, I am 210lbs and I am curious if you got better result due to a lower body weight.

BUT I must also stress I am much better also once off CAFFEINE, people should try this!!!

My theory on POIS is we are all working with stressed out systems, and an O just puts our systems over the edge....

PS.
« Last Edit: 21/09/2011 19:09:32 by POIS-SUFFERER »
 

Offline Guthrie

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« Reply #14683 on: 21/09/2011 21:26:33 »

Yep was not lying :-) I have clearly demonstrated with myself that it is not placedo, I do not get 90-95% however, more maybe 75%, but I have never up'd the dose to 1500mg, always 1000mg. 500mg per capsule.
I have been using it for many many months, my doctor told me to try it after I described all my
"issues", I spoke of it also months ago, but no one was on the XN/B3 path yet.......

PS.

POIS-SUFFERER, I didn't mean to cast doubt on your initial statement! :)  I just wanted to try it for myself as well. 

Can you tell us how long ago you started taking the Niacinamide?  Have you been taking it every day since then?
« Last Edit: 21/09/2011 21:30:20 by Guthrie »
 

Offline Guthrie

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« Reply #14684 on: 21/09/2011 21:28:53 »

Guthrie, you said you took 1100mg and got very good results, it would help to know your weight, I am 210lbs and I am curious if you got better result due to a lower body weight.


I am about 165 pounds, so my body weigh is a little bit lower.  Who knows, that could potentially be a factor.
 

Offline demografx

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« Reply #14685 on: 21/09/2011 22:41:05 »

That's interesting about your doctor suggesting [Niacin(amide)]!!! He must be very astute.

What type of doctor is he? Did he have any suggestions as to why you should try [it]?



Just wanted to chime in with MY "very interesting" too!
« Last Edit: 21/09/2011 22:45:10 by demografx »
 

Offline demografx

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« Reply #14686 on: 21/09/2011 22:42:17 »

helloworld, welcome to the POIS thread of The Naked Science Forum!




Here are some POIS resources which may be helpful to you:

Our new POIS Forum - architectural genius: "daveman" - for detailed subject-by-subject discussion!
http://www.POISCenter.com/forums/index.php
Our 4-year-old POIS thread here at Naked Science Forum will also always remain open for newcomers, for general unstructured discussion, and historical research of the 10,000+ postings here since 2007.

The Learning Channel's (TLC)  feature TV presentation on POIS, featuring our member here at this forum, "Animus". It was aired on May 22, 2011. Here is a link to the file for that TV documentary, "Desperate Measures", which can be downloaded and played. The segment starts at about 12:20..
http://www.fileserve.com/file/cUtJa9R/TITLE01.mp4

Our POIS Information Website, built by "mat780", is here:
http://sites.google.com/site/POISwebsite/

The POIS Information Website is home to the famous POIS Forum Compendium, written by "Pyropeach", and contains theories already discussed here and treatments that have both worked and failed.

Please see "B_Jim"'s POIS Summary of All Cases, here as well as others on the Web. This includes remedies that we have tested, and results.
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg149009#msg149009

"Girlwind" has created an excellent POIS Video:

Our new POIS chatroom (realtime chat). Invite or visit another member(s) there, ANY TIME. We can all get to know each other better:
http://forums.delphiforums.com/POIS/chat

Post Orgasmic Illness Syndrome "POIS": Case report

Authors:
Abdalla M Attia*, Magda H Al-Ziny, Hossam A Yasien
*Corresponding author: Andrology Unit, Minoufiya University, Shibin El Kom, Eygpt

For more info, check out emi_b's  SMF POIS thread:
http://poiscenter.com/forums/index.php?topic=191.0;topicseen


Available Upon Request:

1. and 2. POIS Research Studies, 2011

These 2 papers reveal Dr. Waldinger's POIS autoimmune hypothesis and suggests one possible avenue of treatment.

3. First POIS Research Study, 2002

We have a copy of the first formal medical investigation on POIS by Prof. dr. Marcel D. Waldinger,MD,PhD, and Dr. Dave Schweitzer, MD.

  
4. Recent POIS Research Study, 2010

CASE REPORT
Postorgasm Illness Syndrome - A Spectrum of Illnesses
Jane Ashby, MRCP, and David Goldmeier, MRCP
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg316781#msg316781


5. British Medical Journal Case Report, 2010

Case study by Dr. Selwyn Dexter of a patient with a headache-featured POIS symptom treated with progesterone/norethisterone.
http://casereports.bmj.com/content/2010/bcr.10.2009.2359.short?rss=1


How to get any or all of the above 5 studies: send me or "daveman" a Private Message (PM) with your regular email address (use "AT" instead of "@" ) and we'll send you back the PDF(s).

To send a Private Message, click on "Messages" at the top of this page. At the Messages page, click on "New Message". From that point on, it works just like posting a message here, except that it only goes to the person(s) you designate.

Remember to put a quote around the recipient's name, i.e., "demografx", or "daveman".


New York Times article,

January 20, 2009
Mind
Sex and Depression: In the Brain, if Not the Mind
By RICHARD A. FRIEDMAN, M.D.
http://www.nytimes.com/2009/01/20/health/views/20mind.html?_r=1&scp=1&sq=friedman%20sexual%20January%2020&st=cse

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

In addition to serving our own informational interests, the resources listed above can be useful for you to show our credibility to the medical world - which often shows little understanding and is sometimes skeptical of our condition: POIS has scientific underpinnings and POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapeutic community. All of this information can greatly help you to fight the immediate reaction of some doctors: so just tell them, "IT'S NOT 'ALL IN OUR HEADS'! "

Also, it can be helpful when dealing with medical professionals to point out the successful existence of our rapidly growing forum, which has already been referenced in respectable sources such as the Journal of Sexual Medicine (Dr. Waldinger's study), British Medical Journal and wikipedia:
http://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome

For over 4 years, our POIS forum has attracted over 200 POIS sufferers worldwide who have posted here, research on an additional 200 sufferers elsewhere on the internet, plus over 1,300,000 page visits. Not bad for a rare malady!



SEARCH THE FORUM WITH GOOGLE

We have an overwhelming amount of data: more than 4 years' worth of posts (over  10,000 posts!) from 200+ Forum members, and an additional 200 POIS sufferers found elsewhere on the Internet by Member B_Jim.

In the Google search box, type
whatever-it-is-you're-interested-in-finding-out[space]POIS[space]site:http://thenakedscientists.com/

for example, I tried
nocturnal emission POIS site:http://thenakedscientists.com/

and 740 results came up for "nocturnal emission" within the Forum.

be careful with spaces (you can use them before the word "site") and no-spaces (everything after the word "site")

Google even provides you results with the Message# for each result. But Message #'s do change, so be patient and look for the approximate Message#.




 

Offline demografx

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« Reply #14687 on: 21/09/2011 23:12:23 »
POIS RESEARCH FUNDING PLEDGE DATABASE

Guys, this is CRITICAL. Feedback, please!!


What do you think of yesterday's post by me and daveman?
http://www.thenakedscientists.com/forum/index.php?PHPSESSID=f1c91646606fe05966112da4a8b83702&topic=6576.msg367730#msg367730

What do you think of OUR OWN database pledge program? Or would you prefer to use  www.thepoint.com with someone else managing your donations (and tax deductions)?

Let's PLEASE get this out in the open! Post a reply. YOUR input is needed!

YOUR POIS-FREE FUTURE DEPENDS ON THIS, SO PLEASE SPEAK UP. NOW!!!
« Last Edit: 22/09/2011 20:55:18 by demografx »
 

Offline daveman

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« Reply #14688 on: 21/09/2011 23:30:26 »
Has anyone on the forum done comparison tests between regular niacin and nicotinamide, to see if the latter has any effect on POIS?

Or also compare Niacin with L-Histidine.

http://psychology.wikia.com/wiki/Histamine
Sexual response
Research has shown that histamine is released as part of the human orgasm from mast cells in the genitals. If this response is lacking this may be a sign of histapenia (histamine deficiency). In such cases, a doctor may prescribe diet supplements with folic acid and niacin (which used in conjunction can increase blood histamine levels and histamine release), or L-histidine.



if L-histidine works too (prior, like niacin) then it could point towards low histamine at orgasm as a feature of POIS, if you get my drift.

Excessive autoimmune response also causes histapenia. POIS is known to cause CFS, for the drain on histamine production. So we still can't discount the auto-immune theory.

I think it's already quite clear that there is low histamine production at orgasm. What's more it seems that the components used to produce the histamine to make up for the shortfall, are the ultimate cause of the POIS symptoms. The same components that are used to produce histamines are base components for the eventual balance in neurotransmitters that control sensitivity to the nervous system, that when unbalanced produce myalgia and cognitive disorders.

These base components are supported by the B vitamine complex. If L-histadine worked too, it would just support the same theory wouldn't it?
 

Offline demografx

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« Reply #14689 on: 22/09/2011 00:26:37 »
POIS RESEARCH FUNDING PLEDGE DATABASE

Cross-posted from the SMF forum:
http://poiscenter.com/forums/index.php?topic=213.0


Great idea guys!

I cannot believe that we are having such difficulty getting POIS sufferers to contribute.

If one considers the lost income over a lifetime due to this plague, I would have thought everyone would jump at a chance to get real help.

$100 is such a small sacrifice compared to what other things cost... Just Do It!!!!!!!!!!!

Definitely count me in!!



Thanks, EDS!

« Last Edit: 22/09/2011 00:36:33 by demografx »
 

Offline POIS-SUFFERER

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« Reply #14690 on: 22/09/2011 02:43:22 »

Yep was not lying :-) I have clearly demonstrated with myself that it is not placedo, I do not get 90-95% however, more maybe 75%, but I have never up'd the dose to 1500mg, always 1000mg. 500mg per capsule.
I have been using it for many many months, my doctor told me to try it after I described all my
"issues", I spoke of it also months ago, but no one was on the XN/B3 path yet.......

PS.

POIS-SUFFERER, I didn't mean to cast doubt on your initial statement! :)  I just wanted to try it for myself as well. 

Can you tell us how long ago you started taking the Niacinamide?  Have you been taking it every day since then?

Almost everyday for many months now.

I also take some pills to help digestion now and again, as it feels like food is just sitting there and taking a lot of energy out of me try to digest it on my own, these pills seem to help also. (digestive enzymes)

PS.
 

Offline lauracostis

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« Reply #14691 on: 22/09/2011 05:24:34 »
There has been a BIG slowdown in donations for our NORD POIS research fund! Only a valiant few have made donations these past few months. Below, there is a very good but typical story of how a research donation to a fund like NORD can save and greatly improve lives.

In fact, if it were not for Nordnurse (Stefanie) who works daily with rare disease causes, we would still be flailing around, thinking, scheming, supposing and inventing, to find a solution to the POIS problem.

Haven’t we seen enough doctors who don’t take us seriously? Haven’t we seen enough to see that the only ones who care are the effected themselves? Maybe we could FIND the cure ourselves, but we would have NO cooperation in implementing it without the support of some real, peer-reviewed, scientific research.

It’s beyond saying that we must support our research fund -- and must bring it to life! It is an absolutely necessary requirement. All of our effort, time, ideas and concepts are worth absolutely zero without it.

What choices do we have?  

We can sit on our haunches, waiting for the money to magically appear. Or – like other groups with rare conditions, we can take the bull by the horns.  We MUST do our part to get that basic research started!

Nordnurse sent us an inspirational story recently, and we felt that it would be a good story to share with you all–

”There's a physician on NORD's Medical Advisory Committee (MAC),
Dr. Robert Campbell, Jr -- an angel who poses as a human being here on earth. 

As a pediatric orthopedic surgeon, Dr. Campbell’s special area of interest is a group of HORRIFIC disorders that begin in infancy and childhood – called “thoracic insufficiency.”  Basically, the ribs do not grow, and the baby/child literally and inevitably suffocates to death.

When Dr. Campbell, as a new researcher, applied for a NORD research grant for thoracic insufficiency, back in the late 1980s, he knew that he would have an uphill battle.  Having had a first career as an engineer, his proposal was unusual, definitely “outside the box.”  Based in solid medicine, he proposed an idea for an expandable titanium rib – a medical device for these fatally ill children.

There were many applications for this one $30,000 grant, which had been donated in full by the desperate parents of a young child who was suffering terribly and facing certain death. NORD’s MAC liked Dr. Campbell’s proposal, despite knowing that it might be very difficult for him to get the type of future funding from government or private industry.  Despite this concern, they trusted their appraisal of his proposal’s scientific merit, and awarded that grant to him. 

The rest… as they say… is history.

Because of that first basic NORD study, Dr. Campbell later received major funding from industry.  He has since patented the titanium expandable rib, and these children no longer die a slow, miserable death.  They go on to live their lives!

The expandable titanium rib is now “The Standard of Care” for children with this disorder.

http://www.c-spanvideo.org/videoLibrary/clip.php?appid=598537344

Dr. Campbell joined NORD’s MAC as a senior attending physician and researcher about eight years ago.  He was recently honored on Capitol Hill for his unswerving work to save the lives of children with this horrible disorder (thoracic insufficiency).


Fellow POIS sufferers and comrades – we NEED that basic research – and we need those funds – NOW!  Our group focus must dramatically change – from speculation to ACTION. 

We can and should continue posting our comments, asking our questions, and sharing our experiences. But if we want a way out of the hell of POIS – which can only come from scientific research – we must walk the walk!

The next grant cycle at NORD begins in March 2012.  That gives us six moths to raise ~$30,655.  Monthly, that equates to ~ 5,100/month. That translates into ~ $50/month from 100 donors each month.

Walking the walk, taking action -- this requires EFFORT. Stefanie knows from experience at NORD that only this kind of personal effort lead to the road of a real solution.

We propose a serious pledges database, where there will be a fixed time of 30 days maximum to register your pledge.  This will provide more time over which to amortize any payments. Pledges may be made as a lump sum or divided over months to come.

We require a minimum of donors (100), as we cannot expect a few to pay the majority. Every donor will be granted a place in a VIP area on the SMF forum where all things pertaining to the grant will be discussed, and first information will be disseminated.

Upon pledging the required amount, monthly payments will be begun. Each pledge will be billed (as a formal reminder) at which point his pledge should be converted into an actual donation. Each donor will donate personally to NORD so as to (1) receive any tax deduction and/or (2) maintain anonymity (two issues not covered by other systems such as thepoint.com).

This program was devised as a means to be assertive in the implementation and follow through of the research program, to avoid extra costs and limitations imposed by outside entities and to benefit, through personal management of money and donations by each individual.

An individual thread has been opened on the SMF forum for a brief discussion of  the details of this program at http://poiscenter.com/forums/index.php?topic=213.0 Thanks for your input. The database will be generated as soon as possible.

Your friendly POIS Forum Moderators,
Demografx
Daveman


we should be sending requests for donations to organizations and private donors who give money.  One or two outside donors could easily fund the minimum amount we need to get started.  I know somewhere there are lists of organizations that allocate money to charities and medical research to people who request and solicit them.  We should start soliciting these entities ASP.

Laurac, excellent idea! Can you take that on as a project as we pursue our own constituency?
I would but I start a clinical rotation on monday and I will barely have a enough time to complete regular activities of daily living. 
 

Offline CertainlyPOIS

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« Reply #14692 on: 22/09/2011 16:47:06 »
There has been a BIG slowdown in donations for our NORD POIS research fund! Only a valiant few have made donations these past few months. Below, there is a very good but typical story of how a research donation to a fund like NORD can save and greatly improve lives.

In fact, if it were not for Nordnurse (Stefanie) who works daily with rare disease causes, we would still be flailing around, thinking, scheming, supposing and inventing, to find a solution to the POIS problem.

Haven’t we seen enough doctors who don’t take us seriously? Haven’t we seen enough to see that the only ones who care are the effected themselves? Maybe we could FIND the cure ourselves, but we would have NO cooperation in implementing it without the support of some real, peer-reviewed, scientific research.

It’s beyond saying that we must support our research fund -- and must bring it to life! It is an absolutely necessary requirement. All of our effort, time, ideas and concepts are worth absolutely zero without it.

What choices do we have?  

We can sit on our haunches, waiting for the money to magically appear. Or – like other groups with rare conditions, we can take the bull by the horns.  We MUST do our part to get that basic research started!

Nordnurse sent us an inspirational story recently, and we felt that it would be a good story to share with you all–

”There's a physician on NORD's Medical Advisory Committee (MAC),
Dr. Robert Campbell, Jr -- an angel who poses as a human being here on earth. 

As a pediatric orthopedic surgeon, Dr. Campbell’s special area of interest is a group of HORRIFIC disorders that begin in infancy and childhood – called “thoracic insufficiency.”  Basically, the ribs do not grow, and the baby/child literally and inevitably suffocates to death.

When Dr. Campbell, as a new researcher, applied for a NORD research grant for thoracic insufficiency, back in the late 1980s, he knew that he would have an uphill battle.  Having had a first career as an engineer, his proposal was unusual, definitely “outside the box.”  Based in solid medicine, he proposed an idea for an expandable titanium rib – a medical device for these fatally ill children.

There were many applications for this one $30,000 grant, which had been donated in full by the desperate parents of a young child who was suffering terribly and facing certain death. NORD’s MAC liked Dr. Campbell’s proposal, despite knowing that it might be very difficult for him to get the type of future funding from government or private industry.  Despite this concern, they trusted their appraisal of his proposal’s scientific merit, and awarded that grant to him. 

The rest… as they say… is history.

Because of that first basic NORD study, Dr. Campbell later received major funding from industry.  He has since patented the titanium expandable rib, and these children no longer die a slow, miserable death.  They go on to live their lives!

The expandable titanium rib is now “The Standard of Care” for children with this disorder.

http://www.c-spanvideo.org/videoLibrary/clip.php?appid=598537344

Dr. Campbell joined NORD’s MAC as a senior attending physician and researcher about eight years ago.  He was recently honored on Capitol Hill for his unswerving work to save the lives of children with this horrible disorder (thoracic insufficiency).


Fellow POIS sufferers and comrades – we NEED that basic research – and we need those funds – NOW!  Our group focus must dramatically change – from speculation to ACTION. 

We can and should continue posting our comments, asking our questions, and sharing our experiences. But if we want a way out of the hell of POIS – which can only come from scientific research – we must walk the walk!

The next grant cycle at NORD begins in March 2012.  That gives us six moths to raise ~$30,655.  Monthly, that equates to ~ 5,100/month. That translates into ~ $50/month from 100 donors each month.

Walking the walk, taking action -- this requires EFFORT. Stefanie knows from experience at NORD that only this kind of personal effort lead to the road of a real solution.

We propose a serious pledges database, where there will be a fixed time of 30 days maximum to register your pledge.  This will provide more time over which to amortize any payments. Pledges may be made as a lump sum or divided over months to come.

We require a minimum of donors (100), as we cannot expect a few to pay the majority. Every donor will be granted a place in a VIP area on the SMF forum where all things pertaining to the grant will be discussed, and first information will be disseminated.

Upon pledging the required amount, monthly payments will be begun. Each pledge will be billed (as a formal reminder) at which point his pledge should be converted into an actual donation. Each donor will donate personally to NORD so as to (1) receive any tax deduction and/or (2) maintain anonymity (two issues not covered by other systems such as thepoint.com).

This program was devised as a means to be assertive in the implementation and follow through of the research program, to avoid extra costs and limitations imposed by outside entities and to benefit, through personal management of money and donations by each individual.

An individual thread has been opened on the SMF forum for a brief discussion of  the details of this program at http://poiscenter.com/forums/index.php?topic=213.0 Thanks for your input. The database will be generated as soon as possible.

Your friendly POIS Forum Moderators,
Demografx
Daveman


we should be sending requests for donations to organizations and private donors who give money.  One or two outside donors could easily fund the minimum amount we need to get started.  I know somewhere there are lists of organizations that allocate money to charities and medical research to people who request and solicit them.  We should start soliciting these entities ASP.

Laurac, excellent idea! Can you take that on as a project as we pursue our own constituency?
I would but I start a clinical rotation on monday and I will barely have a enough time to complete regular activities of daily living. 

am going to see what i can do, do you have a clue where to start. And is anybody else willing to do it.
 

Offline demografx

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« Reply #14693 on: 22/09/2011 17:46:09 »
Thanks, CC! Maybe Laurac knows?
 

Offline daveman

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« Reply #14694 on: 22/09/2011 19:03:04 »
Thanks, CC! Maybe Laurac knows?

Seconded.... the help really appreciated, and maybe it's all we would need. One or two that have good hearts and lots of money.

Also, there may be parallel interests out there that have similar medical mechanisms, looking for anybody to have a cause that provides a mechanism to investigate.

We can proceed with our plan, and if that one special donor comes along (s)he can tip the pot.

Who knows.....
 

Offline Vincent M

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« Reply #14695 on: 22/09/2011 23:33:55 »

The next grant cycle at NORD begins in March 2012.  That gives us six moths to raise ~$30,655.

I'm confused. I thought we had years to raise that money.
« Last Edit: 22/09/2011 23:44:08 by Vincent Marcus »
 

Offline demografx

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« Reply #14696 on: 23/09/2011 00:14:30 »

The next grant cycle at NORD begins in March 2012.  That gives us six moths to raise ~$30,655.


I'm confused. I thought we had years to raise that money.


We do. If that's how long you want to wait.
 

Offline daveman

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« Reply #14697 on: 23/09/2011 01:23:50 »

The next grant cycle at NORD begins in March 2012.  That gives us six moths to raise ~$30,655.

I'm confused. I thought we had years to raise that money.

We don't loose anything if we don't make the minimum by the time mentioned (other than time). The grants are processed once a year in March. If we don't make it this year it will be a year more.

...and a year more .... and a year more etc.

Personally I don't understand why there's so little interest. (with all respect and gratitude to those who have shown their seriousness already)

We will NOT find a cure without the grant. This means until we do the research we can spend all the time in the world here for nothing.

It might be argued that we have found testosterone, niacin, fenugreek, desensitization, discovered many posibilities, but we still can't go to a doctor and have him take us seriously. We could find the cure, and it won't do us a darn bit of good if we can't convince the doctors that they must treat us with it.

It's like buying a wind-up toy and not winding it up. It's like having a million dollars and living in a shack with a mattress made of money. Do we understand this?

There are many of us that don't believe the auto-immune theory, there have been no other proper studies. We have nothing. Do we understand that?

If we carry on like this, what does it serve us to discuss ANY theory? Do we understand this?

We're talking $50 per month for 6 months. We can take out a small loan, sell a couple of things, work overtime. Or we will just carry on as we have for 4.5 years.

 

Offline Itsthatskater

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« Reply #14698 on: 23/09/2011 05:38:12 »

The next grant cycle at NORD begins in March 2012.  That gives us six moths to raise ~$30,655.

I'm confused. I thought we had years to raise that money.

We don't loose anything if we don't make the minimum by the time mentioned (other than time). The grants are processed once a year in March. If we don't make it this year it will be a year more.

...and a year more .... and a year more etc.

Personally I don't understand why there's so little interest. (with all respect and gratitude to those who have shown their seriousness already)

We will NOT find a cure without the grant. This means until we do the research we can spend all the time in the world here for nothing.

It might be argued that we have found testosterone, niacin, fenugreek, desensitization, discovered many posibilities, but we still can't go to a doctor and have him take us seriously. We could find the cure, and it won't do us a darn bit of good if we can't convince the doctors that they must treat us with it.

It's like buying a wind-up toy and not winding it up. It's like having a million dollars and living in a shack with a mattress made of money. Do we understand this?

There are many of us that don't believe the auto-immune theory, there have been no other proper studies. We have nothing. Do we understand that?

If we carry on like this, what does it serve us to discuss ANY theory? Do we understand this?

We're talking $50 per month for 6 months. We can take out a small loan, sell a couple of things, work overtime. Or we will just carry on as we have for 4.5 years.


                       
What exactly is the grant going to do to help find a cure?
 

Offline mellivora

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« Reply #14699 on: 23/09/2011 12:08:33 »
I had a simple thought. Its obvious really but quite timely given I've also just read on here the latest ideas on raising cash for the NORD grant.

A traditional way to raise funds for a cause might involve a sponsored run or bike ride or some such where you get family and friends to sponsor you to complete such an event. As has been discussed before, POIS has the major drawback of being an awkward thing to talk to family and friends about which makes such sponsored fundraising difficult for us.

However, in reality, all one would need to do is to name the National Organisation of Rare Disorders (NORD) as the organisation one is raising money for with an outline of what they do, helping largely unheard people find relief for little known debilitating illnesses. I think that could be as unquestionably acceptable to people as say raising money for a cancer charity, children's charity or wildlife charity. You could just say you wanted to do a sponsored event and when you heard about NORD it somehow seemed a worthy cause. It should be possible to then ensure that this money is channelled in to the NORD POIS fund when it is received. I don't think that is too deceptive. I'm sure friends and family would donate to a POIS fund anyway if they truly knew our suffering and at the end of the dsay the money is indeed going toward a NORD project.

Bizarrely this has only just occurred to me so I haven't taken action but I wanted to throw it out there in case it inspires anyone who already has fundraising ideas,
 

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« Reply #14699 on: 23/09/2011 12:08:33 »

 

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