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Author Topic: Post Orgasmic Illness Syndrome:a question  (Read 7573 times)

lyner

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Post Orgasmic Illness Syndrome:a question
« on: 14/07/2009 13:21:11 »
I wonder how many of the readers and contributors to that thread  go there because they have actually suffered and how many go there because the word "orgasm" is in the title?
It just seems to go round and round in circles - much like the Moon Landing Conspiracy threads.


 

Offline demografx

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Post Orgasmic Illness Syndrome:a question
« Reply #1 on: 15/07/2009 00:25:21 »

I wonder how many of the readers and contributors to that thread  go there because they have actually suffered and how many go there because the word "orgasm" is in the title?
It just seems to go round and round in circles - much like the Moon Landing Conspiracy threads.


I've been there from the beginning, two years ago, have been  moderator for almost that length, and can assure you that all who go to the Post Orgasmic Illness Syndrome (POIS) thread....... _suffer_ , not "suffered" past tense.

Certainly no one I have ever seen goes for the titillating aspect of "orgasm". If they did, they would be ejected immediately.

I've seen your negativity before and I frankly don't understand it in any way, shape or form.

POIS is a chronic, debilitating, agonizing malady. And the forum "going round and round" as you say, allows newcomers the freedom to say "the same thing" because it is a (pleasant) shock for most new entrants to find that there are fellow-sufferers in a medical world which does not yet understand the physiological, cognitive, and emotional torture that is called POIS.

The science of orgasm is in its infancy.

I have seen our little "round and round" make HUGE progress. Personally, I've made enormous advances, more in the last 2 years thanks to Naked Science Forum's little POIS thread than I had in the last 30+ years that ruined a good chunk of my life.

If we can help someone avoid their next 30+ years of misery, I certainly feel gratified. Just the presence of the forum gives people hope, 3 of which have expressed suicidal ideation, and are now on positive footing.

We have begun an entry in Wikipedia, created an interactive online survey research instrument, a Compendium of theories advanced and treatments attempted. We have already attracted a well-known Harvard researcher's attention (a pioneer in HIV research)and we're also on the verge of attracting some prestige medical researchers, created a YouTube video, and much more.

But the most important thing is the hope we have given to hundreds, if not thousands, of sufferers around the world.

Thank you, Naked Science Forum!
« Last Edit: 15/07/2009 01:32:08 by demografx »
 

Offline Karen W.

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Post Orgasmic Illness Syndrome:a question
« Reply #2 on: 15/07/2009 01:38:37 »
I think the thread is a good thing! I do not think just having the word orgasmic in it causes any problems.

 We are adults here in an adult forum and we can use the English language in its intended usage without it being vulgar or attracting the wrong crowds.

 Frankly I had no idea people suffered from this illness and I have found it very informative and think it is a subject which needs a voice like it  gets here, in the hopes if for no other reason but to let others suffering know that they are not alone in their sufferings!

  I WISH DEMO AND THE WHOLE THREAD THE BEST AND AM SYMPATHETIC TO THE PROBLEMS AND HURDLES THEY HAVE TO OVERCOME TO REGAIN A NORMAL SEX LIFE !   I WISH THEM ALL THE BEST!
« Last Edit: 17/07/2009 18:51:18 by Karen W. »
 

lyner

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Post Orgasmic Illness Syndrome:a question
« Reply #3 on: 15/07/2009 07:57:02 »
I stand corrected.
Apologies.
 

Offline demografx

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Post Orgasmic Illness Syndrome:a question
« Reply #4 on: 15/07/2009 09:04:13 »

I stand corrected.
Apologies.


Thank you very much.
 

Offline demografx

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Post Orgasmic Illness Syndrome:a question
« Reply #5 on: 15/07/2009 09:29:47 »

I think the thread is a good thing! I do not think just having the word orgasmic in it causes any problems.

 We are adults here in an adult forum and we can use the English language in its intended usage without it being vulgar or attracting the wrong crowds.

 Frankly I had no idea people suffered from this illness and I have found it very informative and think it is a subject which needs a voice like it  gets here, in the hopes if for no other reason but to let others suffering know that they are not alone in their sufferings!

  I WISH DEMO AND THE WHOLE THREAD THE BEST AND AM SYMPATHETIC TO THE PROBLEMS AND HURDLES THEY HAVE TO OVERCOME TO REGAIN A NORMAL SEX LIFE !   I WISH THEM ALL THE BEST!


Karen, thank you so much for your kind words!

The word "orgasmic" is part of the official syndrome labeled in the first study ever of this malady in 2002 by two internationally published Dutch physicians, Dr. Marcel Waldinger, a neuropsychiatrist,  and Dr. Dave Schwartz, an endocrinologist, called "Postorgasmic Illness Syndrome".

And Karen, you accurately pinpointed one of the prized treasures of the thread: the instant recognition of newcomers who find new partners to help solve this vicious riddle, after many lonely years, if not decades, of suffering in silence.

POIS is a rare malady and tremendously misunderstood by the medical community worldwide. Almost all sufferers have experienced severe rejection because of this.

We are very grateful to have the opportunity afforded by Naked Science Forum to help each other find a cure.
« Last Edit: 17/07/2009 18:51:58 by Karen W. »
 

lyner

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Post Orgasmic Illness Syndrome:a question
« Reply #6 on: 15/07/2009 17:26:25 »
POIS is not the only chronic, debilitating condition, though and I should have expected to see equally long threads on ME, PTSD and ADHD, to which all the above comments apply equally. It could be that those, and other such conditions, have their own websites.
 

Offline Counterpoints

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Post Orgasmic Illness Syndrome:a question
« Reply #7 on: 15/07/2009 19:37:20 »
POIS is not the only chronic, debilitating condition, though and I should have expected to see equally long threads on ME, PTSD and ADHD, to which all the above comments apply equally. It could be that those, and other such conditions, have their own websites.

And what's the alternative?  That the word "orgasm" has induced hundreds of people to pretend, on a regular basis, to have a serious illness?  I think the users of this forum deserve more credit than that.  For example, I am a successful physicist who happens to have this problem; I can't afford to waste my time playing games.

The reason for the thread length is that POIS is relatively unknown; to anyone who has this condition, a venue for discussion and support is extremely valuable.  This problem was first officially described in 2002, by Marcel Waldinger.  There are not locally accessible support groups, or widespread internet discussions, available to those who have this condition. 

Also, the word "orgasm" is used to describe this syndrome, because it is a post-ejaculatory condition.  It could not be described without making reference to orgasm.  And unfortunately, I don't think this has helped us at all. People are conditioned to be squeamish, suspicious, and dismissive of most things connected to sex -- a very unhealthy attitude in my opinion, and one that has caused most of the POIS sufferers a lot of grief when trying to find help.  If someone has a sexual problem, should he or she say nothing because it would involve using the word "orgasm", a non-vulgar term used to describe something essentially everyone experiences?  What lesson does this attitude teach us?  To be ashamed of ourselves? To not seek help for fear of embarrassment?

My life has been substantially improved through the information available in the POIS thread. This is also true for many others.  I am very thankful for this opportunity.  :)
« Last Edit: 15/07/2009 20:22:08 by Counterpoints »
 

lyner

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Post Orgasmic Illness Syndrome:a question
« Reply #8 on: 15/07/2009 20:58:29 »
I appreciate that. Is this, in fact, the only conduit for these views? It seems that there is a need for more than just a thread in a 'new theories' section of a Science website? Perhaps someone should invest some effort in getting this Syndrome publicised more fully by starting some serious Web presence.
 

Offline LeeE

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Post Orgasmic Illness Syndrome:a question
« Reply #9 on: 15/07/2009 21:45:28 »
I'm in agreement with SC on this; I don't deny its seriousness to those who suffer from it but if it is such an issue it should have it's own support forum.

As a single thread, which is now effectively too long to read in its entirety and whose main purpose seems to be to offer recognition and support, I don't see how it can really work effectively in any respect.  Rather than advancing the issue I think this single enormous thread may actually be retarding it; a single thread is inadequate for the purpose but its presence has lead to people posting in there instead of setting up a proper discussion forum for it.
 

Offline Counterpoints

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Post Orgasmic Illness Syndrome:a question
« Reply #10 on: 16/07/2009 18:12:25 »
Is this, in fact, the only conduit for these views?

For years there have been reports of POIS scattered across the internet, on MD forums, ISSM, etc. But the thread here is the only place, as far as I am aware, where POIS sufferers have interacted with one another.*  This problem is sufficiently rare (or unreported), that it really feels quite amazing for anyone with POIS to talk with someone else who has remarkably similar symptoms, and to share potential solutions.  (Such interactions can make a difference between a wasteful and a productive and happy life).

We have worked on outside resources, but the thread is still extremely valuable for attracting new sufferers; it seems the longer it is, the more effective it is in this regard.  We have also organized information within the thread, to make it more accessible to newcomers.

I agree that it would be nice to have something more dedicated to POIS on the web, but websites, online discussions, forums, administrators, servers, don't appear on their own.  People have to volunteer to do these things.  And regardless of what happens -- whether additional websites are made with forums and administrators and support (something I agree would eventually be good) -- I feel the thread will be a very important resource for a long time.

*(Possible exception: last year, I found a French blog that had many postings about this).
« Last Edit: 16/07/2009 20:11:10 by Counterpoints »
 

lyner

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Post Orgasmic Illness Syndrome:a question
« Reply #11 on: 16/07/2009 18:52:38 »
I must say, I don't read this thread often so I may have missed it but do you ever post any useful links here? As you have a lot of readers, they might find that useful.
What you need is a Website which could be multidimensional and structured - much more use than a string of thousands of posts. Why doesn't someone get involved that way?
It's cheap enough / free.
 

Offline Counterpoints

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Post Orgasmic Illness Syndrome:a question
« Reply #12 on: 16/07/2009 19:00:54 »
I must say, I don't read this thread often so I may have missed it but do you ever post any useful links here? As you have a lot of readers, they might find that useful.
What you need is a Website which could be multidimensional and structured - much more use than a string of thousands of posts. Why doesn't someone get involved that way?
It's cheap enough / free.

Whenever a newcomer posts, Demografx posts an introductory message with useful links. 
For example, http://www.thenakedscientists.com/forum/index.php?topic=6576.msg261389#msg261389

The idea of a website has been discussed many times.  It has never materialized, and given the present resources available or in progress -- POIS survey, summary, compendium, video, wikipedia -- it never seemed worthwhile, unless it had forum functions, which are not easy and free to implement in a way that would be practical, and attract newcomers.  Even then, the idea of multiple threads threatens to disrupt the flow of conversation.  I'm guessing such a site would not be particularly active.  We have tried to gauge enthusiasm for such a site, and the activity it might have, and both have been minimal.

Everything that is being done is voluntary.  At present, the priority seems to be to rally our limited resources (people, time, money, energy) towards finding credible researchers who would have an interest in studying this condition.
« Last Edit: 16/07/2009 19:37:43 by Counterpoints »
 

lyner

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Post Orgasmic Illness Syndrome:a question
« Reply #13 on: 16/07/2009 20:45:11 »
Fair enough but if you want to be taken seriously, you need to play the Internet Game, these days. I fear.
 

Offline afcghd0

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Post Orgasmic Illness Syndrome:a question
« Reply #14 on: 28/08/2009 06:03:21 »
help me from Post Orgasmic Illness Syndrome POIS
Its killing me

If you have any solution please post to afcghd0@yahoo.co.in

Edit - I replied via regular email - demo
« Last Edit: 29/08/2009 08:01:19 by demografx »
 

Offline Variola

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Post Orgasmic Illness Syndrome:a question
« Reply #15 on: 28/08/2009 09:43:31 »
Fair enough but if you want to be taken seriously, you need to play the Internet Game, these days. I fear.

Unusually I actually agree with SC on this one. A forum, for example, dedicated to POIS could be free and eay to set up. I have done it myself and I have little to no techy experience. Time wise it would take no more than would be required to read the latest posts on POIS and reply to them, particularly if the poster is new and you are having to repeat the same answers/replies again.
You could have a part of the forum dedicated to research, another to possible solutions to alleviate POIS, another to answer the basic FAQs  and so on. Any newcomers on here to the POIS thread could be given a link to the forum, indeed you could put it on your profile.
A nice flashy website would be ideal but that takes time and often money, so in absence of that a well constructed forum would be useful.
 

lyner

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Post Orgasmic Illness Syndrome:a question
« Reply #16 on: 28/08/2009 17:06:52 »
"Unusually"?
I don't talk complete garbage all the time, you know!
 

Offline glovesforfoxes

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Post Orgasmic Illness Syndrome:a question
« Reply #17 on: 28/08/2009 17:39:48 »
i agree with sophiec, variola, and leee. i don't think sc created this thread out of spite or dislike of POIS - it was more likely the opposite, in order to help POIS' recognition by researchers, so that something more can be done about it.

a website is definitely a good option to develop the community spirit! you could also contact a local university, or better find a researcher interested in the disease, and eventually put yourself forward for research into it's causes. the unfortunate POIS sufferers of this forum have the amazing opportunity to be participants of a study that will help people, as well as pioneering a website dedicated to supporting sufferers of the disease! you should take this opportunity!
« Last Edit: 28/08/2009 17:48:49 by glovesforfoxes »
 

Offline demografx

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Post Orgasmic Illness Syndrome:a question
« Reply #18 on: 28/08/2009 18:32:13 »

Thank you gloves, I really appreciate the sentiment. Yours and everyone else's!

And I sincerely apologize for any misunderstanding.

We have started a website:
http://sites.google.com/site/poiswebsite/

As to finding researchers, sad to say, it has been very sluggish. We approached a major university, WHO, and others.

I think the difficulty is partly because it's a rare disorder and partly because of funding. My guess is that the hesitant researchers would show more interest if funding were available. Amazingly, 3 forum members spontaneously offered a modest commitment when research begins!

We have gotten encouragement from NORD (National Organization for Rare Disorders). But their minimum requirement is to first raise $35,000 and they suggest ways to do that. But I don't see us holding neighborhood barbeques asking for money to help us with our orgasmic difficulties :) Confidentiality is an issue.

Once again, on behalf of everyone at the POIS thread, your support is greatly appreciated! Thank you.
 

Offline glovesforfoxes

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Post Orgasmic Illness Syndrome:a question
« Reply #19 on: 29/08/2009 00:21:28 »
fantastic that you have taken these steps. it's a very admirable and courageous thing to do - i don't know if i could contact the WHO! i'm sure with an everlasting supply of endurance, a bit of luck, a curious researcher and some economic upturn things will go more your way ;)
 

Offline demografx

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Post Orgasmic Illness Syndrome:a question
« Reply #20 on: 29/08/2009 07:53:08 »

Gloves, that's so nice of you to say! Yes...WHO is a challenge. We're trying for the 3rd month to get them to even acknowledge they got my email(s) :D
 

Offline Madidus_Scientia

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Post Orgasmic Illness Syndrome:a question
« Reply #21 on: 29/08/2009 08:12:45 »
Did someone say orgasm?
 

Offline demografx

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Post Orgasmic Illness Syndrome:a question
« Reply #22 on: 29/08/2009 09:05:13 »
 ;D

No...organ...we were (ahem) discussing church organ music and the variations in choirs...
 

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