[demografx]

All,
I have had durations in the past when I had zero symptoms, the exception to the rule. My gut feeling is that they all had some specific thing in common. It is very annoying not knowing what that difference is!

John, this deepens the mystery. My symptoms/reactions have always appeared with clockwork precision. Counterpoints and others do share your intermittency, with sadly no explanation.

[Counterpoints]

At some point, I think we need a compromise between "forum contributions", and making POIS more known to the world.  (Unlike Demografx), I don't think one necessarily takes priority over the other. I also think the latter (making POIS more known) contributes to the former (the forum). This is a decision each of us will have to make; and I don't think it's an "all or none" decision either.  Making POIS known is critical to our group. Any steps in this direction are incredibly appreciated.  And please let your efforts be known in advance, so that others here can contribute and comment.  It is important for this condition to be accurately characterized.

[CertainlyPOIS]

I agree we need a compromise i think we have enough people to divide, into marketing and medical. I will comment more soon.
I have a question.
I wonder if those who weigh more their symptoms last the usual 7 days
I also wonder if those who weight less recover faster.
Is there a ways i can get weight and recovery speed from every one.
Am doing this because fat affects level of testerone in body and also i noticed some recover in three days and other in 7 days.
I weigh 205 and recover in 7 days.

[demografx]

185 and 3-4 days (pre-T treatment)

[demografx]

Counterpoints, we have made numerous marketing attempts over the last 2 years. Not much has happened. Are you proposing something different going forward?

To clarify my earlier post, _without_ some specific change, I don't see a return on our limited time/energy investment.

So who do you propose will do what differently?

[Finally]

I agree we need a compromise i think we have enough people to divide, into marketing and medical. I will comment more soon.
I have a question.
I wonder if those who weigh more their symptoms last the usual 7 days
I also wonder if those who weight less recover faster.
Is there a ways i can get weight and recovery speed from every one.
Am doing this because fat affects level of testerone in body and also i noticed some recover in three days and other in 7 days.
I weigh 205 and recover in 7 days.

I found a link on Life Extension site: It didn't seem to work when I posted it

Go to Lef.org
Look for health concerns link and then scroll to Male Hormone Restoration. 

[Counterpoints]

Counterpoints, we have made numerous marketing attempts over the last 2 years.  [...] I don't see a return on our limited time/energy investment.

First of all, even if we had made numerous failed attempts, it doesn't mean never to try again. We need to go beyond this forum in broadcasting POIS... that is a critical step, and we can't just give up.  In my opinion, the best thing for us would be to get this condition more researched.

But having said that, we really haven't made many attempts, and not all of the attempts have been failures.
1) We tried contacting some researchers.  We've had lukewarm success with this.  We got in touch with Waldinger, who is aware of this site, and the fact there are many people with POIS reporting their symptoms here.  You also found a good research doctor.  I was put in touch with an  MD PhD internal medicine specialist with a research interest in POIS.  Recently, I got in touch with one of the world's most renowned neuroscientists to discuss this.  I think this is an avenue we should continue to vigorously pursue..... perhaps we could write a letter that summarizes this condition, and theories, etc., and then send it out en masse to researchers?.  Or better, we could LaTeX a .pdf explanation, and then host it on olympe-network

2) There is a POIS video, which has about 2000 views, and is otherwise just good to have, in case we would like to do some kind of similar marketing.

3) Some of the recent great contacts you [Demografx] have made.

4) The letter to WHO, which we're waiting on.  We'll see what happens with that, although it may take awhile.

5) Wikipedia article.  Again, luke-warm.  There was a deletion debate, but there was also a resounding "keep" vote.  This also increased POIS awareness, and we could further use it to increase awareness, by building links to it in Wikipedia and other encyclopedias.  In the future I think this will be an asset, despite the uninteresting state of the present article.

Some publicity that we haven't generated, but which has helped us:
6) Waldinger's article
7) NYT Article

What do I propose to do differently?  Well, I think some of what we have been doing is good -- we just haven't been persistent enough.  Every time we ask someone for help, even if our letter is excellent, and we've done pretty much everything we could, there's probably less than a 10% chance we'll receive a helpful reply.  This means we'd have to send out 10 letters, to expect even 1 helpful reply.  (Assuming binomial random variables ).

So I think we need to be persistent.

You're right, time is limited.  I suppose the easiest thing at this stage would be to clarify some ideas that people have, and try and round them out, and organize things.  Then when we could make a list of tasks, and a rough time commitment. It would be nice to have a Mr. Anderson / Neo / "The One", who could grab the reigns and help us make some outside progress.  .  Like you, I'm pretty busy.  I don't have much time.


We just can't be discouraged by rejection.  That's the first step.  If you sent off a young Al Pacino to hollywood, I'm sure he'd be rejected over 100 times before finding a good role.  Demo, you've contributed to outside progress.  Don't sell yourself short!

Edit: .. I think you changed your question from "what do I propose to do differently?" to "who do I propose will do what differently".  Who? Anyone who wants to reach out and get POIS more known more researchers.  I suppose he should do it any way he/she wants.... although persistence will be an asset.

[demografx]

You're right, Early Day Zero has affected me []

I built a successful business (no longer involved) by getting clients with perseverance and with the assumption that for every 100 "suspects", there are only 10 real "prospects", resulting in only one (1) solid client. Those pessimistic statistics kept me grounded, realizing that the "chase" should never stop. It's a numbers game, as you say.

So let's go get 'em! 

[demografx]

I'd like to re-mail WHO. Any suggestions what to say? How about   2ND REQUEST: RSVP  , and re-play the letter showing date, time sent?

[martin88]

I'd like to re-mail WHO. Any suggestions what to say? How about   2ND REQUEST: RSVP  , and re-play the letter showing date, time sent?

I think it's too soon to re-email WHO. It was mentionned on their site to wait for months for the answer, because they have a lot of emails. Now if the precedent letter failed, I think it's not required to send an other copy. Maybe there is something discrediting our condition in it.

[demografx]

OK, Martin, we'll wait, please remind me if you can remember!

I just communicated with my pharmacology-attorney friend who has been very helpful to us. I told him about our research dilemma and asked him if he can help. His reply:

"[demo], I'll ask around, but you're right, 1/10,000 ain't gonna shake anyone up."

My Harvard biophysicist friend suggested that we contact the NIH Office of Rare Disorders Research.
http://rarediseases.info.nih.gov/

Should I send them (ORDR) the same letter as we sent to WHO? (CP? Martin? B_Jim? anyone else?)

[demografx]

1. American Association of Clinical Endocrinologists (AACE)
http://www.aace.com/

While I was looking into mailing to AACE membership (they want $750), I had a thought: maybe we could simply write to AACE President, with a WHO-type letter, but emphasizing our "endocrine-related" malady, the fact that Dr Waldinger's co-author is an endocrinologist, etc.

Maybe they can give us suggestions/referrals for potential POIS Research group that would study us?

2. The Endocrine Project
http://www.query.com/terp/

They have an email listed. Note their focus on thyroid and cortisol!

Your feedback, please.

[Counterpoints]

Great work Demografx!

I think we should send to
1) http://rarediseases.info.nih.gov/
2) e-mail/post a letter to AACE President
3) e-mail the endocrine project.

It could be the same letter for each (with small modifications: e.g. a sentence at the beginning of each letter explaining why we decided to write to that particular organization). At a glance, http://rarediseases.info.nih.gov/ 
shows the most promise. 

The WHO letter would serve as a good template.  How about we aim to have these letters sent out by this time next week?  I can offer some editorial/writing assistance on Mon,Tues.

[demografx]

Some follow-up:


Dr Beyer-Flores, endocrinologist, author, "The Science of Orgasm"

Dear Dr Beyer-Flores,

Since this was my first correspondence with you, I was just wondering if my email reached you. I'm sorry if this email is premature, I'm sure you're very busy.

I just wanted to make sure I had your correct address.

Looking forward to hearing from you!

Best regards,

[first name, last initial]

[demografx]

Great work Demografx!

I think we should send to
1) http://rarediseases.info.nih.gov/
2) e-mail/post a letter to AACE President
3) e-mail the endocrine project.

It could be the same letter for each (with small modifications: e.g. a sentence at the beginning of each letter explaining why we decided to write to that particular organization). At a glance, http://rarediseases.info.nih.gov/ 
shows the most promise. 

The WHO letter would serve as a good template.  How about we aim to have these letters sent out by this time next week?  I can offer some editorial/writing assistance on Mon,Tues.
emphasis mine for draft deadline to CP

Thanks, CP!!

[pyropeach]

Just found this and had never read this before..... anyone else miss this....

I found it at http://forum.mesomorphosis.com/mens-health-forum/post-orgasmic-illness-syndrome-134261293.html

They did not say this is the answer.... they just found it interesting....

QUOTE:

This is called orgasmic stress (OS) induced by excessive conversion of dopamine-norepinephrine-epinephrine in the brain and adrenal glands under the sympathetic nervous function for you to achieve orgasm.
Action of Norepinephrine and Epinephrine on the sympathetic alpha receptor causes constriction of blood vessels upon orgasm. Excessive norepinephrine and epinephrine (excessive stress and anxiety) will eliminate the relaxation hormone prostaglandin E-1, resulting in tension in the rear brain, neck and shoulders where the norepinephrine and epinephrine neurons are very dense. Neck and shoulders have the densest neuro-hormone epinephrine and norepinephrine receptors in the body, followed by the urogenital areas (uterus, ovaries, vagina, clitoris, penis, testicles, and prostate), digestive tract and head skin. That is why stress, anxiety and panic can cause neck and shoulder pains and face cramp, urinary incontinence, infertility, prostate/uterine/ovarian tumors/cancers, prostate enlargement, erectile dysfunction (impotence and frigidity), digestive dysfunction, stomach cramps, and even hair loss(yes! Stress causes hair loss!). Excessive orgasm can produce Orgasmic Stress, resulting in these problems too. If you have a good blood circulation, excessive neurohormones Norepinephrine and Epinephrine can be dispersed out of the local tissues, then metabolized by the liver and expelled by the kidneys to the bladder. The un-metabolized neurohormones can also stimulate the bladder and urethral sympathetic nerves.
A low level of DHEA and androstenedione / estrogen will also cause excessive sympathetic nervous functions. Nausea is due to excessive epinephrine (sympathetic nervous functions) in the digestive systems - digestive stress.
Your body's responses to orgasmic stress out are the same as your work stress out. The difference is that the orgasmic stress occurs instantaneously upon orgasm and during sexual tension (extreme arousal), but both orgasmic and work stresses can last very long. To solve the orgasmic headache and nausea Orgasmic Stress), you have to
1. reduce the dopamine-norepinephrine-epinephrine conversion in the brain and adrenal medulla, and the epinephrine level in the bloodstream (who can do those? 5-HTP and Kava Kava!);
2. partially block the sympathetic alpha receptors;
3. increase the DHEA/androstenedione (for balancing testosterone and estrogen!) levels;
4. increase the acetylcholine and serotonin levels to modulate the sympathetic function for orgasm - de-stress the body for orgasm;
5. partially inhibit the acetylcholine re-uptaking in the synapses and power the parasympathetic nervous functions to balance the sympathetic functions that induce stress against the cardiovascular, digestive, liver, kidney and adrenal functions;
6. increase the prostaglandin E-1 (PGE-1) production in the local tissues by increasing the DHEA, acetylcholine (and its neurochemicals), and androstenedione levels;
7. Improve the local blood circulation by massage to quickly remove epinephrine and norepinephrine from the local tissues and to quickly replenish the local tissues with the nutrients, oxygen, DHEA/androstenedione and neurochemicals for the synthesis of PGE-1. Heating the local tissues can also promote the PGE-1 production to release the pulling or constriction pain. Massaging and heating on the neck and shoulders can extensively affect the PGE-1 concentration in the brain stem.
Note that Massaging and Heating the low abdomen, low back and tail bone can do the same effects on the PGE-1 production for release of the PMS or orgasmic/post-orgasmic pains or cramps in the low abdomen, low back/tailbone, and pelvic floor

PS

I just wanted to respond to this because it was something that looked like it could go into the compendium...but excessive conversion to dopamine to norepinephrine to epinephrine, based on my biochemistry classes, doesn't make too much scientific sense.  Although I suppose it is possible (by a super long shot) that we overexpress the enzyme between dopamine and norepineprine and underexpress the enzyme between norepinephrine and epinephrine, which might cause a buildup of norepinephrine to abnormal levels and cause POIS. 

[demografx]

in reverse chrono order, starting with my reply this afternoon to Mary Roach, NY Times Top Ten Best Selling author

Thanks again, Mary! Not heard from SFC, would it be ok if I call Violet-Blue? (Great name!)

Many thanks,
demo

Sent from my iPhone

On Jun 18, 2009, at 12:54 PM, mary roach  wrote:

Hi demo!  I got no reply from Tara Parker-Pope [NY Times Science writer], so not sure what she thought. I also forwarded the info to SF Chronicle sex columnist Violet-Blue, as she had expressed interest in the subject.  Have you heard anything from her? 

Cheers,
m

[martin88]

Thanks Demo for your work. Here is an additional way you can go :
In this study (which is very interesting) there are some names and email of people to contact :
http://www.ncbi.nlm.nih.gov/pubmed/11760788
If they want, I think these doctors can really know how to help us because they already have done similar studies.
A problem we'll face, even if we have a researcher, is to be able to regroup a good number of pois sufferers to participate.
Do you think it could be possible to organize research on pois in several labs? Ex: One researcher gives some directives to our own endo to organize the research.

[demografx]

Mary Roach just gave us the green light to contact the SF Chronicle directly

Email from Mary:
"That's totally fine -- I just didn't want to give out her email.  But if it's on-line, go for it. And fine to say we've been in touch....     Thanks, demo!"
m

[demografx]

Thanks Demo for your work. Here is an additional way you can go :
In this study (which is very interesting) there are some names and email of people to contact :
http://www.ncbi.nlm.nih.gov/pubmed/11760788
If they want, I think these doctors can really know how to help us because they already have done similar studies.
A problem we'll face, even if we have a researcher, is to be able to regroup a good number of pois sufferers to participate.
Do you think it could be possible to organize research on pois in several labs? Ex: One researcher gives some directives to our own endo to organize the research.

Fascinating study, Martin. But I don't see where the emails are.