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Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6451224 times)

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5025 on: 25/07/2009 20:37:41 »

I think we're not so far of a research on POIS. If 100 pois sufferers give 350$ to the persons in charge of the research then it's the required 35000$ !



If we have some funds to offer, it's possible that the likes of Dr. Waldinger and Dr. Schweitzer may look into conducting more research into POIS. I'm not sure how you would go about fundraising on a forum, perhaps a combination of public and private pledges for funds towards a specific goal?

 

Martin, and hurray, I re-thought what was said and realized that we have had approx 150 individuals posting here at the POIS thread. Presumably, even though they're inactive, a Private Message to their username here will be forwarded to their regular email address!

And, possibly B_Jim has another 100 that could be tracked down from his out-of-forum research?

Perhaps we could conduct a small fundraising drive? Also, we might find additional willing participants for a POIS research study.
« Last Edit: 25/07/2009 21:52:46 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5026 on: 25/07/2009 21:22:07 »
Maybe we should follow NORD's advice and create a more formal POIS Group?

For example, yesterday I noticed that the prestigious W. M. Keck Foundation accepts grant proposals from groups, but not individuals.
« Last Edit: 25/07/2009 21:26:45 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5027 on: 25/07/2009 21:36:50 »

repetitive lab tests, scans, etc is probably more than 2000$/person (but this can perhaps be paid by our own insurances). So 5000$ seems to me to be low to conduct a serious study.
I think the money could be sent directly to NORD (?) or to the organization where the researchers are. But definitely they should find something for sure if we send money. At least they should be able to rule out some of the possible causes we have explored.


Martin, sad to say, there are no guarantees as to what the researchers will find - for ANY amount of money!

That's why it's absolutely critical for us to VERY critically review the researchers' credentials, and monitor progress, and generally be as fully involved as possible in the research study process.
 

Offline Dean93

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5028 on: 26/07/2009 00:50:47 »
Hey everyone,

Now that the issue of funds is being discussed, I think this would be an appropriate time to seriously consider a POIS website, as it could be used to collect donations an further spread the word about POIS. While this is a great place for us, the sufferers, to converse, I think it's a  pretty generally accepted opinion that it, being so huge, is highly unapproachable to anyone outside of the group.
 

Offline hurray

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5029 on: 26/07/2009 01:12:44 »
Congratulations on 2000 posts Demo - hope there will be many more milestones to come  :)

Unless we eradicate POIS that is, then we wouldn't have anything to post about  ;D
 

Offline hurray

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5030 on: 26/07/2009 01:26:32 »
I can't see how a fundraising drive would hurt - I would be happy to pledge some money - so long as it clear to everybody what we are raising funds for. If we are planning on PMing everyone who has posted here, we need to have a clear goal to aim towards. The $35000 to get NORD involved sounds like an excellent idea, I wonder if NORD could tell us how far that money would go?

Creating a formal POIS group sounds like a great idea - I consider everybody on this forum as part of the group, although I'm not sure how that could be formally recognised!

An official POIS website is a great idea - I hope somebody with the relevant skills and knowledge will build one some day! Whether we would need that to collect money or not I don't know - for example I mentioned to Demo that I would be happy to pledge $1000 towards POIS research if we fully identify a worthwhile way to spend the money.

Informal pledges via this forum may be the best way to get things moving initially - the money doesn't need to be collected until we have reached our target.
 

Offline Limejuice

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5031 on: 26/07/2009 02:55:14 »
Raising money out of pocket for NORD seems worth while but some of us have insurance we can use. We pay for insurance so we can use it when were sick and help mitigate high cost of medical assistance. That sounds a lot like what we need for POIS.
 

Offline mat780

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5032 on: 26/07/2009 03:44:15 »
Dear All,

Iíve been following the posts from time to time since the beginning of this year, when my andrologist told me that I had POIS (that same day I found this forum).
I remember saying, when he told me what I had: ďWellÖ it doesnít have a cure, but at least it has a nameĒ.

In the same situation as I am (passive readers), I suppose there are probably many more.

I think that a POIS website would be a great idea to diffuse what POIS is. I believe there are thousands (highly probable a lot more) of people suffering the same as us, but they havenít found this forum (as itís a little hidden), and the only way to find it is when you already know that itís called POIS.

Limejuice: Please, donít get me wrongÖ but I doubt too much that your medical insurance company will pay for a POIS investigation in a million years  :(

Thanks to all of you that contribute to this great forum!!!
Demo keep on with this hard work!!!

PD: I apologize for my writing; Iím not a native speaker of English  :)
 

Offline hurray

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5033 on: 26/07/2009 04:08:43 »
Raising money out of pocket for NORD seems worth while but some of us have insurance we can use. We pay for insurance so we can use it when were sick and help mitigate high cost of medical assistance. That sounds a lot like what we need for POIS.

If your medical insurance will pay to investigate POIS this would be an enormous help to everybody on this forum! I admit that I had doubts that medical insurance would cover an illness that so little is known about by the medical community, but I hope you can persuade your insurers to help Limejuice! Good luck and let us know what happens!
 

Offline hurray

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5034 on: 26/07/2009 04:12:13 »
Welcome mat, hope to hear more from you  :)
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5035 on: 26/07/2009 04:40:19 »
Limejuice, I agree. And I think that's because it's a bureaucratic route to take.

Which is only one option. We have a tremendous amount of resources and knowledge about POIS from the 2+ years at this forum, and we have a bright and motivated group of people here (with the exception of your moderator).

So one option is to simply raise funds, then spend them very, very carefully. At the same time, there's no reason we can't continue to send out appeal emails, like we did with WHO and NORD.

And what you point out about insurance is true. I've been working with a major university hospital's endocrinology program, and even though it's outside my medical-network, the insurance still covers quite a bit!

The brain scan, for example, cost about $3,000. I paid a tiny fraction of that.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5036 on: 26/07/2009 06:24:28 »

mat780, welcome to the POIS thread of The Naked Science Forum!




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

Please see "B_Jim"'s POIS Forum 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:

And filling out the POIS survey created by "Counterpoints" will enable you to share POIS information and details with others here. This will also enable us to work more easily with outside researchers by having more organized data available about us:
http://pois.olympe-network.com/

POIS Research Study

We have a copy of the first and only study on POIS by Dr. Marcel Waldinger,MD and Dr. David Schweitzer, MD.

If you want a copy (PDF), send me a Private Message with your regular email address and I'll send you back the PDF.

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 my name, i.e., "demografx".


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 the medical world - which often shows little understanding and is sometimes skeptical of our condition - that POIS has scientific underpinnings and that POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapist community. This can help fight the immediate reaction of some: 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 for over 2 years, which has attracted over 100 POIS sufferers worldwide who have posted here, plus more than 300,000 page visits. Not bad for a rare malady!
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5037 on: 26/07/2009 06:36:01 »
mat780, this post below might help you find answers easier by tailoring a Google search to this POIS forum:


SEARCH POIS FORUM WITH GOOGLE

We have an overwhelming amount of data: over 2 years' worth of posts from 150+ Forum members.

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

for example, I tried
demografx site:http://www.thenakedscientists.com/

and 1,000+ results came up for "demografx" within POIS 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 Limejuice

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5038 on: 26/07/2009 06:43:44 »
Thanks Demo.

I've had over 10 doctor visits, over 10 blood draws, and over 30 hormone tests all for POIS.  And I've paid maybe $100 because of insurance.  As long as the doctor orders the tests with a diagnosis - it doesn't need to be called POIS, it can be called severe brain fog, or intense apathy or whatever because your sick and that what matters for insurance - insurance will likely cover the expense.  That's what it is there for and why we can use it.
 

Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5039 on: 26/07/2009 06:44:28 »
At the same time, there's no reason we can't continue to send out appeal emails, like we did with WHO and NORD.
I agree, and that's why since last week I'm working on a form to collect emails. It was initially Counterpoints who talked in the forum about collecting emails, so thanks to him for this.

For the research I'd say that if the resarchers could contact our own MDs then insurance will have to pay, but perhaps it doesn't work like that. Maybe NORD can give more information about this because they know people who went through the same way.
« Last Edit: 26/07/2009 14:07:50 by martin88 »
 

Offline mat780

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5040 on: 26/07/2009 14:20:18 »
People,

When I said that it is very unlikely that medical insurance will investigate POIS, I didnít mean that doctors wonít make you all the tests needed, even if each test cost a fortune! I live in Argentina (hope Iím not infringing any forum rule saying that  :P), and if you have a good medical insurance they wonít stop you or ask you for another cent to make you those tests prescribed by your doctor. What I meant is that researchers, at least here, donít have much relation with medical insurance companies. Medical insurance companies pay for doctors and tests, but I understand they wonít pay anyone to investigate a new strange illness.
I believe we should focus on people that do serious research as a living (universities and foundations), and try to diffuse information about POIS as much as we can.

In the case we finally decide to create a POIS website, you can count on me to make the Spanish translation of it.

Thanks to all of you for the welcome!  :)
 

Offline EDS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5041 on: 26/07/2009 14:53:03 »

I had nothing to say except that this is my 2,000th post on POIS!     ;D





                         




Congratulations on the 2000th posts Demo! You do a great job as moderator!!

Count me in for a contribution toward research. I would gladly pay $1000 for serious scientific analysis on this malady.
« Last Edit: 26/07/2009 14:55:07 by EDS »
 

Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5042 on: 26/07/2009 15:06:43 »
In the case we finally decide to create a POIS website, you can count on me to make the Spanish translation of it.
Very nice proposition Mat! Thank you. This could be also useful for the Wikipedia articles.

John,B_Jim,Going crazy,
You all convinced me to start blueberries,cranberries,probiotic diet!
Maybe this can help: if the antioxydant is the active ingredient it seems that wild blueberries are better according to this table :
http://en.wikipedia.org/wiki/Oxygen_radical_absorbance_capacity#Food_Sources

There is a study linking social phobia with antioxydant (in humans!) (I'm not sure however if they say that SP will be helped with increased intake of antioxydants.):
http://www.ncbi.nlm.nih.gov/pubmed/18339429
« Last Edit: 26/07/2009 15:11:13 by martin88 »
 

Offline mat780

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5043 on: 26/07/2009 16:16:09 »
Martin,
You can count on me for the Wikipedia article too!
Please, bear in mind that Iíve never written anything on the Wikipedia, and I donít know much about scientific or medical vocabulary. Anyway, if you want me to do it, Iíll give it a try  :)
 

Offline Limejuice

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5044 on: 26/07/2009 16:16:39 »
Gotcha Mat.

Strange, I did a google search on Lactobacillus casei and the first result mentioned candida in the description.  I wasn't even searching for candida.  I thought Lactobacillus casei did something completely different than effect candida.  Just thought I'd mention it.
 

Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5045 on: 26/07/2009 19:04:03 »
Gotcha Mat.

Strange, I did a google search on Lactobacillus casei and the first result mentioned candida in the description.  I wasn't even searching for candida.  I thought Lactobacillus casei did something completely different than effect candida.  Just thought I'd mention it.

Thats why Im taking Threelac
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5046 on: 26/07/2009 19:07:45 »
Thanks Demo.

I've had over 10 doctor visits, over 10 blood draws, and over 30 hormone tests all for POIS.  And I've paid maybe $100 because of insurance.  As long as the doctor orders the tests with a diagnosis - it doesn't need to be called POIS, it can be called severe brain fog, or intense apathy or whatever because your sick and that what matters for insurance - insurance will likely cover the expense.  That's what it is there for and why we can use it.

Exactly! I'm being treated for hypogonadism, which is true!

Who knows where hypogonadism and POIS intercept????

Another important point, I think, is that a diagnosis of "POIS" for labwork would halt progress immediately I'm sure!
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5047 on: 26/07/2009 19:56:49 »

Congratulations on the 2000th posts Demo! You do a great job as moderator!!

Count me in for a contribution toward research. I would gladly pay $1000 for serious scientific analysis on this malady.


EDS, thank you so much for both items!

We're rich!! I'm sure if we approached Dr. Waldinger with this as a beginning, he would at least respond to my emails!!  ;D

EDS, it's great to have your feedback about moderating. Most people do understand my actions and thinking, or at least I would like to think so.  :)

And you, EDS, as one active forum participant (for which I thank you very much), do seem to understand that everything I say or do is only for the benefit of wiping that filthy scourge called POIS right off the planet Earth! (and if POIS is on other galaxies, that, too :))

And I am certainly not into "personality", "ego", "agenda", as a very very few have insinuated.

This is a teriffic group!!!
« Last Edit: 26/07/2009 20:04:34 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5048 on: 26/07/2009 20:02:00 »

There is a study linking social phobia with antioxydants (in humans!) http://www.ncbi.nlm.nih.gov/pubmed/18339429


Martin, but what if I come back reincarnated as a rat and want to socialize????  :o
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5049 on: 26/07/2009 20:18:11 »

In the case we finally decide to create a POIS website, you can count on me to make the Spanish translation of it.

Thanks to all of you for the welcome!  :)


Thanks for your thanks to the group!

We have discussed a website many times. Great idea! But it seems we don't have the volunteers needed to create it and run it. This Naked Science forum has a dedicated infrastructure that we could not possibly duplicate with the resources we have.

It has been a big struggle, at least for me, to continually keep this forum alive, considering how few POIS sufferers there are in the world. And once people visit, only a very few dedicated ones stay and contribute. And we also have 350,000 page views, representing a large "lurking" visitor population. I hope they all benefit, but not many step forward to take the next step. We also have other priorities: outreach, funding, awareness, wikipedia, not to mention our own POIS treatments, as well as the exploration of POIS theories, remedies, and mutual support!

We are completely open to it, though. It would advance our cause quite a bit!

Someone, anyone, please correct me if I'm wrong about volunteers and resources necessary to develop and maintain our own website!
« Last Edit: 26/07/2009 20:26:26 by demografx »
 

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Re: Post Orgasmic Illness Syndrome (POIS)
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