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Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6438661 times)

Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4625 on: 17/06/2009 06:37:28 »
I dont think tv will accept us, we dont have that kind of dramatic story to back up the situation on how it is changing life and also you cant see pois so it will be hard for them to believe and attract viewers.

I love the idea but i dont think american media will accept.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4626 on: 17/06/2009 08:15:48 »
NakedDynamo, welcome to the site! Since you came in right after my welcome note to Langjahr, I won't repeat it.

Please familiarize yourself with our resources, in the post to Langjahr directly above yours.

Since this forum started 2 years ago, we have discussed and/or followed through with many of the things you mention.

We have someone promoting us at The New York Times hoping to get coverage. We have made some other attempts, but our resources are extremely limited.

Another impediment to being more aggressive with media coverage is that most of us wish to remain anonymous.

We have concluded that our malady is very rare. Which is why it's been under-researched and which is why we get blank stares about POIS from the medical community, which mostly has never heard about this before. We have all experienced this lack of awareness, such as being referred to psychotherapists or dismissed for one lame reason or another. But we have gotten much better at working with the medical community.

We have sought funding and studies, without success so far. Again, we have very limited resources to even pursue that.

However, the progress here has been phenomenal. I have made more progress personally through the forum, in two short years - than in all the 30+ years I've suffered with POIS and visited experts around the planet and tried every trick in the book to get relief.

Please review as many of the posts as possible, and we look forward to your participation in any way that can help!

Thank you very much for all the interest you expressed.

 
« Last Edit: 17/06/2009 08:20:42 by demografx »
 

Offline NakedDynamo

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4627 on: 17/06/2009 08:21:57 »
CCconfucious...Are you Kidding?

I can seen the headlines already.

A Silent debilitating condition affecting Millions of American Males and possibly hundreds of millions more around the world.

A condition that affects their ability to function properly and affecting every Aspect of their daily life. Leading to severe depression, Anti-Social behavior, Chronic Fatigue etc..

You or someone you know could have it - Suffering in Silence not knowing you or they have it. Yet the symptoms are instantly recognizable by sufferers.
 
There is a group that is actively recognizing this condition..and they are screaming for scientific validation as millions more sufferers are coming forward.......coming up NEXT on Oprah..

 ;)
 

Offline NakedDynamo

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4628 on: 17/06/2009 08:45:39 »
Demografx. No problems. I've seen many welcome notes over the pages..so all good. I feel welcome here already  :D

It seems there are some issues to overcome then.

1. Lack of Resources to gain Media coverage:
If someone here could write (I think all the material is already here) an article that is worthy to be published and just massively submit it to as many News sources as possible to be included. Why stop with New York Times...What about Playboy, Penthouse (where more sufferers are likely to be) Mens Health Magazines etc...Many Online news sources also...

2. More Emails to popular Medical Sites, at least referencing the condition. Maybe pointing to this site..

3. Fully commend you and everyone's efforts here on trying to go to the WHO....Fingers Crossed.

4. Rare...
I'm not entirely sure about this. Perhaps it varies a lot in people...and people don't often consult doctors about this type of condition....because they think its just normal. Myself for example had No idea it was a problem until I found this site. I was just expecting to google a solution and find it on Web MD or something - take more Iron or somethine. I think the more people know about this, the more will come forward..

In the very limited reading I have done on (Ancient) Asian Cultures, they have seemed to want to 'preserve Semen' to preserve energy. Leading to Taoist and Tantric excercises. It may be that this was an ancient way of dealing as best they could with POIS without modern science. Having said that, I read on this forum someone suggesting Acupuncture...Might have to try that.

5. Peoples desire to be anonymous

I don't think we need everyone to put their hand up to be on TV. But Just a handful of willing particpants (I read you had 300,000 new hits to this forum)..I'm sure one or two would be happy to tell their story on TV.

Just My thoughts. Would really like to see this thing sorted out for everyone here and of course myself.

 :D
 

Offline NakedDynamo

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4629 on: 17/06/2009 08:49:08 »
B_Jim. Thanks for the Welcome!

Okay..Hey, Its Oprah. I'm allowed to exaggerate  :D
Seriously though...I think people don't 'Suffer' so much as just 'deal with' or 'put up' with this, thinking it's normal.

I do think there are a LOT more sufferers out there.
 

Offline John21

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4630 on: 17/06/2009 11:36:23 »
I am still mystified that I have experienced no symptoms this time around. Racking my brain, here are some possible reasons:

1. Dietary change (previously stated)
2. Recent Relora use (did it change something?)
3. Recent exercise change: High adrenaline/ intense cardio workout once a week
4. Sleep change (I am doubtful that this could bring total relief)
5. Unknown factor

« Last Edit: 27/06/2009 22:36:45 by John21 »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4631 on: 17/06/2009 16:21:33 »
Welcome.

Quote
Millions of American Males and possibly hundreds of millions more around the world.

:o  ;D After 2-3 years of search I have only 260 testimonies of person suffering of symptoms after orgasm. Prevalence might be > 1/10 000 (pure speculation).



I had the exact same reaction to the numbers as B_Jim. I'll bet no one here has ever heard their doctor say, "Oh, yeah, I've heard of that before."

As I mentioned in my post to you, POIS is very rare.

But I'd be very happy to be proven wrong!
« Last Edit: 17/06/2009 17:35:17 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4632 on: 17/06/2009 16:23:41 »


John, this is bizarre!!! Has it ever happened to you before?
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4633 on: 17/06/2009 17:46:19 »

It seems there are some issues to overcome then.


NakedDynamo, frankly, most of our time and energy is spent helping each other here...because no one else will. That includes things that are most basic, like what kind of doctor to see, what to say, what should we test, etc.

The time and energy we have put in, so far, "outside" has not paid off, and we haven't gotten great encouragement signals.

If you'd like to help in that arena, we'd welcome it! I've already put in significant time - along with others here - and we just haven't seen the return.

I'm very familiar with marketing, publicity, advertising and the like, that was my career for decades.

We could do mass publicity fairly easily, but it would still take dollars. That subject was brought up here and we didn't get a lot of reaction. Also, someone would have to be willing to field the calls from the media and do some significant follow-thru to get our stuff placed properly. It's a job, I've done that before.

I don't wish to discourage anything. But I do want to be realistic about resources. Many thanks.
 

Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4634 on: 17/06/2009 18:01:51 »
I am still mystified that I have experienced no symptoms this time around. Racking my brain, here are some possible reasons:

1. Dietary change (previously stated)
2. Recent Relora use (did it change something?)
3. Recent exercise change: High adrenaline/ intense cardio workout once a week (singletrack mountain biking)
4. Sleep change (I am doubtful that this could bring total relief)
5. Unknown factor



Perhaps an instance of the "good orgasm" / "bad orgasm" phenomenon?

At certain times in my life, POIS has also affected me less. I think this has been dependent on long-term healthy habits (e.g. good diet, good amount of sleep, exercise, abstinence from masturbation, sexually explicit images).
« Last Edit: 17/06/2009 18:17:08 by Counterpoints »
 

Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4635 on: 17/06/2009 18:11:38 »
NakedDynamo,

Just to add to what Demografx said....

I think it's very possible to accurately describe POIS in a way that others would see this as an urgent condition worthy of immediate attention -- and have a more general audience interested in our experiences.  In fact, after Waldinger's paper, I believe filmmakers started to make a documentary in Europe, although something fell through (at the time -- not enough people came forward with POIS, not enough money.. ?). 

So yes, this can be done... what you're hoping for is entirely possible. 

But it's not easy.  It requires a lot of dedicated work.  We'd need to treat the project like a full-time job, and several of us would need to collaborate "full-time" for a period of months.  Even with this, we'd face a lot of rejection before we got cooperation.  (Just like a good actor would often have to make many auditions before his talent is recognized).

Are you up to it?  Are you that dedicated? Because many people come to the forum with a lot of enthusiasm for various projects (double blind testing, etc.), and are surprised we haven't done this or that. But within a week their energy fades away, and weeks later they have basically disappeared.

So yes, by all means, tell us your plans, ask for help (I'm sure many would be willing to contribute in at least small ways -- e.g. reviewing letters...), and so on.  But don't expect it to be easy.  You'll need to be really dedicated to see great results.  Setting up a timetable might be a good first step.
« Last Edit: 17/06/2009 18:45:23 by Counterpoints »
 

Offline John21

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4636 on: 17/06/2009 22:41:38 »
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!
 

Offline Limejuice

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4637 on: 17/06/2009 23:02:00 »
I've experienced two new POIS symptoms over the past six months that I want to share.

- Runny nose
- Sneezing

I've never had physical POIS symptoms for 15 years.  Now I've developed two.

It feels like my body is becoming very sensative after orgasm.

By the way, this tread has become a work of art by the people/artists that have created it.  I couldn't fully express my graditude.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4638 on: 17/06/2009 23:11:14 »

NakedDynamo,

Just to add to what Demografx said....

I think it's very possible to accurately describe POIS in a way that others would see this as an urgent condition worthy of immediate attention -- and have a more general audience interested in our experiences.  In fact, after Waldinger's paper, I believe filmmakers started to make a documentary in Europe, although something fell through (at the time -- not enough people came forward with POIS, not enough money.. ?). 

So yes, this can be done... what you're hoping for is entirely possible. 

But it's not easy.  It requires a lot of dedicated work.  We'd need to treat the project like a full-time job, and several of us would need to collaborate "full-time" for a period of months.  Even with this, we'd face a lot of rejection before we got cooperation.  (Just like a good actor would often have to make many auditions before his talent is recognized).

Are you up to it?  Are you that dedicated? Because many people come to the forum with a lot of enthusiasm for various projects (double blind testing, etc.), and are surprised we haven't done this or that. But within a week their energy fades away, and weeks later they have basically disappeared.

So yes, by all means, tell us your plans, ask for help (I'm sure many would be willing to contribute in at least small ways -- e.g. reviewing letters...), and so on.  But don't expect it to be easy.  You'll need to be really dedicated to see great results.  Setting up a timetable might be a good first step.


Counterpoints, thank you very much for greatly augmenting my post to NakedDynamo!

We all want the same thing, but getting down to the nitty-gritty of action required, with many dirty laundry details, has so far escaped us.

Just to reiterate my earlier point in a different way, if I had the choice of putting my next 10 hours into forum "marketing" or helping the forum to facilitate the flow of information and medical networking, I would take the latter.

That raises the question, why not just take 2 hours out of the next 10? Well, that waters down my effort here, and it's not much time "out there" in the big bad world of competing for medical research attention with AIDS, malaria, swine flu, cancer and the like.

But I (and others I'm sure) will continue to do what we can along the lines of WHO, NY Times, university funding and research, etc.

And I'll even chip in for NakedDynamo's airfare from Australia to appear on Oprah! ;D

« Last Edit: 20/06/2009 17:07:02 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4639 on: 17/06/2009 23:18:05 »
I've experienced two new POIS symptoms over the past six months that I want to share.

- Runny nose
- Sneezing

I've never had physical POIS symptoms for 15 years.  Now I've developed two.

It feels like my body is becoming very sensative after orgasm.

By the way, this tread has become a work of art by the people/artists that have created it.  I couldn't fully express my graditude.

Limejuice, thanks a bunch for the compliments to this forum!!

I get occasional stuffed nose on Day Zero. Wish I knew why, but a similar sensitivity has developed. In my case, it's intermittent.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4640 on: 17/06/2009 23:21:09 »

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.
 

Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4641 on: 17/06/2009 23:32:19 »
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.
« Last Edit: 17/06/2009 23:39:14 by Counterpoints »
 

Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4642 on: 18/06/2009 03:44:48 »
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.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4643 on: 18/06/2009 04:09:56 »
185 and 3-4 days (pre-T treatment)
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4644 on: 18/06/2009 04:25:17 »
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?
« Last Edit: 18/06/2009 04:30:37 by demografx »
 

Offline Finally

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4645 on: 18/06/2009 04:41:58 »
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. 
 

Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4646 on: 18/06/2009 04:55:19 »
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.  :D.  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.
« Last Edit: 18/06/2009 05:14:16 by Counterpoints »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4647 on: 18/06/2009 06:24:00 »
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! 
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4648 on: 18/06/2009 06:29:44 »
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?
 

Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4649 on: 18/06/2009 12:48:42 »
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.
« Last Edit: 18/06/2009 12:51:01 by martin88 »
 

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Re: Post Orgasmic Illness Syndrome (POIS)
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