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Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6456974 times)

Offline RhythmSpring

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4900 on: 17/07/2009 04:04:24 »
You know, I'm no doctor, but I have an inkling that POIS may be caused by a parasitic infection. Put together all the information... carb + sugar sensitivity and cravings, fatigue, fevers. Don't orgasms temporarily weaken the immune system as well?

I suffer from POIS and I just found out that I have Lyme and Babesiosis, two tick-borne infections. We shall see if symptoms persist or go away when I am treated.
 

Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4901 on: 17/07/2009 05:14:48 »
Who is this sophiecentur guy, I don't care about what he said because you can never understand until fall into our true circle of going in and out of pois.  What i have to say his does he have anypower to shut down this forum right now and after we all stop posting.  We need this body of iNformation for the future sufferers. 
WHAT DO WE DO IF SOMETHING IS TO HAPPEN TO THIS WEBSITE.
 

Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4902 on: 17/07/2009 05:26:47 »
Oh yeah i have some progress i believe will help those with nocturnal emissions.  This progress has helped me stay out pois for more than a week, when i used to be just out of pois for just about 3 days.

Sleeping on my side on a couch in a loose jeans pant.
The other one involves buying a big foam and cut a hole in it to accommodate the change in size of my penis during the night.

If this works for the next week i will update you guys.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4903 on: 17/07/2009 06:36:05 »

You know, I'm no doctor, but I have an inkling that POIS may be caused by a parasitic infection. Put together all the information... carb + sugar sensitivity and cravings, fatigue, fevers. Don't orgasms temporarily weaken the immune system as well?

I suffer from POIS and I just found out that I have Lyme and Babesiosis, two tick-borne infections. We shall see if symptoms persist or go away when I am treated.


RS, the link below shows many of the forum's discussions that included "infection":
http://www.google.com/search?hl=en&q=infection+POIS+site%3Ahttp%3A%2F%2Fthenakedscientists.com&btnG=Search&aq=f&oq=&aqi=

Hope it's useful.
 

Offline Finally

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4904 on: 17/07/2009 06:38:52 »
When I found this forum I had googled thing like sexual illness or problems wih sex and all I got was thousand of sites for low libito or HIV cures etc. and a lot of them were pornographic.  On one of my last ditch efforts I tried illness from Orgasm and BINGO I found this group.  Without the word  orgasm there is no way I would have made it here.  It is also a word used commonly by urologists, psychologists Etc. when dealing with their patients.

I just had my blood drawn and I am awaiting the results.  The instructions suggested a 12 hour fast and for accurate PSA levels males not ejaculate for 48 hours before. 
However for the purpose  I was looking for I decided to go against the last part about 24 hours before  which is usually about the peak of POIS symptoms for me.
This POIs was not too bad.
Day 1; A little warm particularly upper back and neck.
Day 2:  Stiff upper back and neck spine area.
Day 3: Started stiff but returned to previous level during day.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4905 on: 17/07/2009 07:23:10 »
Finally, thanks for reporting on the importance of the word "orgasm" in finding us.

Congratulations on your progress with bloodwork! Can you say what you tested for?

Glad that POIS wasn't so horrible this time around.

Looking forward to hearing your results!
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4906 on: 17/07/2009 07:45:20 »

Who is this sophiecentaur guy, I don't care about what he said because you can never understand until fall into our true circle of going in and out of pois.  What i have to say his does he have any power to shut down this forum right now and after we all stop posting.  We need this body of information for the future sufferers. 
WHAT DO WE DO IF SOMETHING IS TO HAPPEN TO THIS WEBSITE.


The issue seems to be resolved amicably. I posted his apology here yesterday. And after my posts, Counterpoints continued to post replies as to why we don't have a separate website, and those posts seemed to be acceptable as well.

I think Martin at one time said that he was creating a backup for this thread?

In any event, we've been given reassurance several times that as long as we were moved to "New Theories" (which we have been), we were ok.

We resolved another concern, which included parents' concerns of kids coming here for school science projects who would possibly read things that didn't sit well with the parents.

I have edited posts that were inappropriately worded, e.g., thos using profanity or "street talk". One or two individuals received PM's from me saying this is a Science Forum, and to please word their posts accordingly.
 

Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4907 on: 17/07/2009 08:06:32 »

Who is this sophiecentaur guy, I don't care about what he said because you can never understand until fall into our true circle of going in and out of pois.  What i have to say his does he have any power to shut down this forum right now and after we all stop posting.  We need this body of information for the future sufferers. 
WHAT DO WE DO IF SOMETHING IS TO HAPPEN TO THIS WEBSITE.


The issue seems to be resolved amicably. I posted his apology here yesterday. And after my posts, Counterpoints continued to post replies as to why we don't have a separate website, and those posts seemed to be acceptable as well.

I think Martin at one time said that he was creating a backup for this thread?

In any event, we've been given reassurance several times that as long as we were moved to "New Theories" (which we have been), we were ok.

We resolved another concern, which included parents' concerns of kids coming here for school science projects who would possibly read things that didn't sit well with the parents.

I have edited posts that were inappropriately worded, e.g., thos using profanity or "street talk". One or two individuals received PM's from me saying this is a Science Forum, and to please word their posts accordingly.

That sounds like a good compromise; i guess we all need to start substituting words for explicit words. We can start a POIS language.
 

Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4908 on: 17/07/2009 08:08:33 »
On neurotransmitters test; demografx does your doctor say that test unreliable because it is not sensitive enough or for another reason.
I was thinking if its because it is not sensitive enough, it would not hurt to try a test. If the test comes out showing problems then a person is definately sure that there is a problem.
 

Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4909 on: 17/07/2009 08:10:45 »
I noticed that while i am fully healed, i still get little episode of pois in my memory, I believe if i can figure out why this is happen i can solve a big puzzle in pois.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4910 on: 17/07/2009 08:14:51 »
CC, he didn't say why neurotransmitter tests are faulty, he just basically dismissed the testing as highly inaccurate. But your approach might be right, that's how breakthroughs are made, by people who ignore conventional wisdom.

But my impression is that his saying it's highly unreliable means that if you find a "problem"...well, it might not really be a problem at all.
« Last Edit: 17/07/2009 18:07:38 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4911 on: 17/07/2009 18:06:26 »
POIS Research Study update

NORD: received a reply today, we're communicating on first name basis, much better than "Sir/Madam". There was a misunderstanding of our letter, since they "couldn't find POIS" in their databases, and referred us to ORDR (we contacted them already)and also to a Urological Assn. I wrote back that POIS is "new" and has NOT been studied properly, and appealed once again to NORD to help us, stressing our urgency, to find a contact person/medical facility who could undertake this new research. I said that we feel that endocrinology, rather than urology, is more important because of the hormonal and neurotransmitter imbalances we believe are involved.

AACE: Dr Garber, their President, is traveling today,so his assistant suggested another email, which I just sent, asking him directly to please call me on my cellphone, stressing urgency. I also asked her to give him my cell and call me as soon as he can, saying I will only take a very few minutes of his time.
« Last Edit: 17/07/2009 18:10:34 by demografx »
 

Offline Karen W.

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4912 on: 17/07/2009 18:42:21 »
Nice Job DEMO!
 

Offline Limejuice

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4913 on: 17/07/2009 18:44:08 »
Awesome. 

I might be down to fly to a study if needed.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4914 on: 17/07/2009 20:12:07 »
Thanks, Karen! Thanks, Limejuice!
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4915 on: 17/07/2009 20:27:14 »
Reply from NORD - please read



Hi [Demo],
 
We do not know of an organization or individual who has the resources to research this specific condition.
 
However--one strong possibility would be for you (and others struggling with POIS) to form a formal patient organization dedicated to raising awareness and raising research funds for this debilitating disorder. As NORD's research program administrator, I can assure you that the researchers are there--they just don't have the funds.
 
NORD can provide guidance to you on forming a patient resource organization.  We have helped countless groups of people suffering from rare disorders to form patient organizations, many of which have taken off with fabulous success!  It can't be done by one person--you would need help from your fellow sufferers. It does not matter if they are overseas or across the USA--all you would need is the will to form a true patient resource group and the ability to use a computer.
 
NORD printed an article on raising funds for research, and published it in our Spring 2008 newsletter.  The three individuals/families who were at the heart of the article had no experience, whatsoever, in forming groups or fundraising.  I can send you that article if you'd like to read it, and you could feel free to forward it to your group.
 
That's just some food for thought--but it is very realistic, I can assure you from our experience here at NORD.
 

Sincerely,

Stefanie Putkowski, RN, BSN
Clinical Information Specialist
Research Program Administrator
National Organization for Rare Disorders
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968
Phone: 203.744.0100
Fax: 203.798.2291
email: rn@rarediseases.org
http://www.rarediseases.org

Join our online community
http://nord.clinicahealth.com/

NORD Subscription Service
http://www.rarediseases.org/programs/subscriptions
 

Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4916 on: 17/07/2009 20:36:56 »
Excellent.  I think we should follow the suggestions.  Any ideas she has would be highly appreciated... and if she has any ideas in the future it would be great to hear from her. 

Raising awareness is very important.  The situation is urgent.

Thanks for your support Karen!
« Last Edit: 17/07/2009 20:55:40 by Counterpoints »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4917 on: 17/07/2009 22:04:40 »
I would like to take a moment to thank Counterpoints for his letter design, especially the Subject line and first paragraph.

I have over 30 years experience in advertising, where I learned that the headlines and opening statements must be powerful, or the reader quickly loses interest and the whole proposition goes in to "the round file"! (Today, it's called the "delete" key : - )

The remainder of the letter also clearly shows our medical sophistication, thanks to the unique scientific training that CP brings to this forum.

MANY THANKS, Counterpoints!
« Last Edit: 17/07/2009 23:25:51 by demografx »
 

Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4918 on: 17/07/2009 22:38:06 »
Thanks! I think we are making great progress.  Good work, Demografx!
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4919 on: 17/07/2009 22:47:08 »
More from our new friend at NORD

Hi [Demo],

That article is attached.  I hope you find it inspirational! (These are just three examples of grass roots efforts to raise awareness and research funds--there are so many others.)

Thank you for your kind words.  If and when you all become interested in forming a formal group, please let me know, so that I can forward your message to the appropriate person here at NORD.

Best wishes to you all!


Sincerely,

Stefanie Putkowski, RN, BSN
Clinical Information Specialist
Research Program Administrator
National Organization for Rare Disorders
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968
Phone: 203.744.0100
Fax: 203.798.2291
email: rn@rarediseases.org
http://www.rarediseases.org

Join our online community
http://nord.clinicahealth.com/

NORD Subscription Service
http://www.rarediseases.org/programs/subscriptions

Attachment: Word doc
RAISING FUNDS FOR NORD’S RESTRICTED RESEARCH FUND
 
“Keep it personal.”  “Find your allies…”
 
These are two quotes from NORD members, expressing some of the repetitive themes echoed by families and/or patient organizations who have successfully raised funds for NORD’s restricted research program.
 
NORD realizes just how daunting it must seem to try to raise the minimum required funds of $35,000 to sponsor a NORD research grant.  But government and corporate financing is often at a bare minimum for rare disease research (for many individual rare disorders, funds are essentially non-existent).  There is a real need for individuals to take the lead in providing the initial seed grant money for researchers.
 
We decided to go straight to the horses’ mouths by contacting some of NORD’s successful family/group research grant fund raisers.  Our aim was to learn, and then to impart to our members and friends, how they took on this challenge. (We wish to point out that none of these individuals are professional fundraisers.)
 
Here, in their own words, are the methods used by some of NORD’s families to raise  money for a research grant.
 
Todd and Heather Talarico, whose 12-year-old daughter, Gabriella, has  APS Type 1 (see NORD Request for Proposal article, page_):
 
"If it's meant to be...it's up to me."   This is a motto that has held significance in our lives but was never more meaningful then when our daughter Gabriella was diagnosed with a rare disorder.  
 
Your first feeling is that of loneliness.   Unlike other challenges that parents face, a rare disorder does not come with tons of literature and a process of treatment clearly defined. You are looking for answers, but then you realize that if you want to get research accomplished, you have to push for it, yourselves.
   
Fortunately for us, we found NORD.   The passion and professionalism of the NORD community helped us to find both the solution and a platform to take action.
   
You'd be surprised to learn what you’re capable of when you get a little direction and have family and friends who care about you.  When we attended our first NORD conference in 2006, we learned invaluable lessons from those who had walked the path before us and who have loved ones with other rare disorders.  
 
We learned the importance of educating the public and raising awareness, and created our website shortly thereafter. We also learned about fundraising and NORD's research program.  It just seemed to be such a great fit for us.  
 
NORD would act as the repository for the grant funds, providing a tax-deductible base for contributors.  Then, after very careful scrutiny, NORD's medical advisory committee (MAC) would choose the best researcher/study, obtained from a pool of carefully screened and reviewed research proposals.
 
We have successfully established a restricted research grant fund at NORD for APS Type 1.  In the process, we learned a lot about fund raising.  Here are a few tips that have worked for us—
 
1. Educate yourselves.  There are books on fundraising.  If you have a local chapter of a nonprofit organization, go in and speak with the director.  You can learn a lot from those people who raise funds for a living.
1. Be tenacious.  Some people may challenge your decision-making, but if your hearts are in the right place and your motivation is high, you can sway the most challenging opponent and get them to help you too!
1. Find events that will raise awareness, raise funds, and that are fun for people to do. Our first golf outing, "Driving for a Cure," was held last year, and turned out to be a great event!   We raised awareness not only about Gabriella’s disorder, but also about rare disorders as a whole.  We had corporate sponsors buying “hole sponsorships,” and also had other events such as a “beat the pro” contest and a “tricky tray auction.”  It was fun for all and we raised over $10,000 dollars!  This year’s event will be held May 16th in Reading, PA. If you want to attend, we have room!
1. Provide flexibility to those wanting to donate. If you create a web site, set up a link to NORD.  Our site, www.apstype1.org, has a direct link to NORD’s website.  This enables people to make a donation with a credit card, on Gabriella’s behalf, to the  APS Type 1 restricted research fund.  All donations are 100% tax deductible.
1. Find your allies...those who share your common bond. By linking up with the few families who are affected by APS Type 1 in the US, we have shared success and found other ways to raise money.   Tim and Paula Muehler have organized donation programs through their local schools.  Paula went to the School Board and gained their support for in- school events, such as  "Pay $5 dollars to wear jeans to school for the day."  It was a great event in support of their daughter, Mackenzie.  Sherri and Dave Seyfort held a raffle basket and auction event in their local town, raising $10,000 dollars!  They also did a great job of getting the local newspaper to write a feature article on their son, Matthew.
1. Ask for help.  And, if someone offers help, take it.  If someone knows more about this subject  than you do, ask for their assistance.  We have no “pride” anymore.  We know what we're good at, but have become aware of where we need advice.  We no longer worry about asking anyone for help.   You'd be surprised at the level of support you will get from people if you just ask.


We've learned so much in just 2 years, and have raised close to $50,000 dollars for NORD’s restricted research fund for APS Type 1!   We know that we still have long road ahead, but are confident that with our faith, family, and friends, we can accomplish anything.
 
Reta Honey Hiers, RN, President, “The Tarlov Cyst Disease Foundation” (see NORD Request for Proposal article, page _)
The Tarlov Cyst Disease Foundation (www.tarlovcystdisease.org)  took a more formal approach to fund raising by incorporating their organization first.  “Our fund raising was preceded by years of organization and preparation,” says Reta Honey Hiers.
 
The Foundation’s Board of Directors felt it was extremely important to have the 501 (c) (3) approval before attempting any fund-raising. The next requirement  we felt  was essential was to have the Foundation’s website online, so that potential donors could read about the Foundation, its mission, specific purposes and objectives, and to learn about Tarlov cysts.
After the website was online, announcement letters were sent to those who the Foundation knew to have Tarlov cysts. “We wanted them to know that  we had laid the groundwork for a non-profit organization that would advocate for them and promote research and education in the future.”
Personal letters written by the organization’s Board of Directors were sent to family and friends to announce the Tarlov Cyst Disease Foundation and to ask for their support.  “We asked them to share the information with their family and friends and perhaps determine any charitable foundations that had grants available for which we might apply.”
They also asked the Tarlov cyst patients to inquire within their family, friends, and co-workers as to potential charitable foundations and grants for which they might qualify.  “As a result, we submitted four grant proposals to Family Foundations that we learned about in communications with family and friends. Unbelievably, we received funds from three of the four!  These grants provided a substantial amount of our fund raising efforts toward initial research...almost half of it!”
The remainder of our initial fund raising efforts came from memberships and donations from Tarlov cyst patients, family, and friends.
“This is only a beginning,” says Ms. Hiers. ” We realize that  we have much more work to do.  A philosophy of  ‘plan, work hard, organize, and ask, believe, and receive’ is one with which we began and will continue to follow. “
The Tarlov Cyst Foundation has just provided NORD with funding for their first organization- sponsored research grant. 

Teri and Mike Holdner, whose son, Joshua, turns 10-years-old this year, has hereditary tyrosinemia, type 1.(See NORD Request for Proposal article, page_)
“We didn’t want to sit around and do nothing,” say Teri and Mike Holdner of North Carolina, after they learned of their son’s diagnosis. “When NORD told us there was no research fund for hereditary tyrosinemia, type 1, we knew that we had to so something.  Becoming proactive helped us to deal with the unknown.
“Our first steps were very small.  Teri came up with the first idea-- to put donation cans out at gas stations.
“Then, we realized that we had to create awareness about tyrosinemia type 1.  So, we told our story to the local paper, and before we knew it, started to receive outside help.  Because of that article, someone contacted us, offering to help us develop a website to raise even greater awareness about Joshua’s disorder.
We posted questions for ideas for a fundraiser on our website, and came up with a golf tournament.  Having never put a fund-raiser together, we contacted Duke University Children’s Hospital & Health Center, and in turn, they put us in touch with someone who had done fund-raising for them.  (Once you have an idea and start working on it, you will be surprised by how many people want to help you!)
With the help of our Duke contact, we raised $5,000, and we then knew that we had to hold more events.  We got invited to speak about tyrosinemia type 1 at a local church, and again, to our surprise, we received a $2,300 donation.  This church, in turn, became our title sponsor for the next golf tournament.
In that church audience was a gentleman who helped us at the next golf tournament, where $15,000 was raised.  This led us to develop our 501(c)3 organization, “Joshua’s Cure.”
If there is anything that we can tell people who want to do fund-raising for NORD’s restricted research program, first and foremost—make this a personal story.  People will feel your passion and dedication, and you will be more successful.
In our case, donations raised by one other family with an afflicted child, and numerous    personal donations through fundraisers, have already helped us to fund three tyrosinemia type 1 grants for NORD’s research program.  
To date we have raised funds by holding seven golf tournaments, six “50’s dances,” two bowling tournaments, a “dating auction” at a local bar, donations of proceeds of the building of a home, one Super Bowl party, and countless personal, individual donations.  All donations have gone to NORD’s restricted research program for tyrosinemia, type 1.
It is very satisfying to us that “Joshua’s Cure” (www.joshuascure.org ) can contribute to research that will help researchers find a cure. In total, we have raised over $80,000, and are still counting!
And it all started in a small town with donation cans in a gas station!
NORD remains amazed and very proud of the tenacity of these and all the other families and patient groups who have been able to raise those precious funds.  They personify the adage that says, “Where there is a will, there is a way.”
« Last Edit: 17/07/2009 23:15:49 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4920 on: 18/07/2009 00:04:18 »

(1) The first issue that comes to mind is the "sex stigma" of POIS, and somewhat related to that, (2)  our own individual privacy/confidentiality concerns and needs.

Well, we should remember that HIV/AIDS was a worse stigma, yet it somehow managed to raise huge sums!
« Last Edit: 18/07/2009 01:48:35 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4921 on: 18/07/2009 01:15:06 »

The 3rd question I have is what % of funds raised go to NORD for administrative, overhead, review of researchers, etc., or is that paid from Govt. grants?
« Last Edit: 18/07/2009 01:40:05 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4922 on: 18/07/2009 01:36:34 »
I plan to make a phone call to WHO (World Health Organization)  on Monday to follow up our letter.

Then during the week, I'll call the newspaper reporter recommended by Mary Roach (when they ask "who's calling?", I'll say, "Demo",  that should work!  ;D) If this trial works, we'll have a blueprint for an expanded publicity campaign. "Next:  Oprah interviews John21, but first a word from our sponsor, Fenugreek! Eyewitness News at 11!"

Then I hope to send out more of Counterpoints' appeal letters to the targeted organizations we discussed a couple weeks back!
« Last Edit: 18/07/2009 01:44:08 by demografx »
 

Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4923 on: 18/07/2009 04:52:34 »
WHAT DO WE DO IF SOMETHING IS TO HAPPEN TO THIS WEBSITE.
I think Martin at one time said that he was creating a backup for this thread?
In any event, we've been given reassurance several times that as long as we were moved to "New Theories" (which we have been), we were ok.
I don't remember It was me who talked about a backup for the forum. But it would be wise to make it. Ideally, we should have a backup of all the texts directly from the forum's database. But I'm dreaming (?).

Very nice work to all of you for the letters.
If possible I'd like to have a copy of the compendium made by Pyropeach.THANKS.

(1) The first issue that comes to mind is the "sex stigma" of POIS, and somewhat related to that, (2)  our own individual privacy/confidentiality concerns and needs.

Well, we should remember that HIV/AIDS was a worse stigma, yet it somehow managed to raise huge sums!
Same thoughts for me for the first part.
POIS is killing us too slowly...
 

Offline pyropeach

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4924 on: 18/07/2009 06:57:13 »
Just FYI, I'm currently marooned on a lonely island...AKA: I don't have internet at my new apartment, so it'll be hard for me to respond to any edits/suggestions anyone still hasn't sent me about the compendium.  I'm also strapped for time with my new back breaking job....but I will try to access the forum and my email whenever I get the chance.
 

The Naked Scientists Forum

Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4924 on: 18/07/2009 06:57:13 »

 

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