The Naked Scientists

The Naked Scientists Forum

Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6449491 times)

Offline mellivora

  • Sr. Member
  • ****
  • Posts: 152
    • View Profile
Post Orgasmic Illness Syndrome (POIS)
« Reply #14700 on: 23/09/2011 12:23:33 »
Rather than just having the "research fund total" in the top right corner of the poiscenter forum, I think it would be motivational to see the total of pledged funds (ie display both totals). This has probably increased more recently than the actually donated funds and, whilst we shouldn't count our chickens until they're hatched, I think it would show that we are actually closer to our goal and others would be inspired by this. You could also, next to the pledged total, put the number of people these pledged donations have come from. I think this would be useful motivation for some.

I've only just read the new proposal for structuring donations and am digesting it..

Is there a a way we can reference the NORD fund on girlwind's POIS video? Perhaps in the short-term that might just mean leaving a comment. I'll have  a look.
« Last Edit: 23/09/2011 12:26:56 by mellivora »
 

Offline daveman

  • Neilep Level Member
  • ******
  • Posts: 1002
    • View Profile
Post Orgasmic Illness Syndrome (POIS)
« Reply #14701 on: 23/09/2011 12:35:08 »
Itsthatskater, good question and very valid:

If you think about it, our biggest problem is recognition! Few regular doctors recognize POIS as a disease or illness in itself. It is seen as something else, something existing and ranges from psychosomatic to who knows thyroid or Lyme disease or whatever.

Doctors are like a cross between engineers and lawyers. On one side technical and knowledagble about the science of the human body. But it is complex, so like lawyers, they base their decisions on past proven and documented cases. There's a very strict guidline as to how these documented cases and testing schemes should proceed, being, after all, that so much is based on the results.

The NORD research grant is a seed grant! Although it is costing us an arm and a leg to raise the $33,500, it's very little. It's barely the salary of one engineer for a year! Any research program will likely involve several very highly trained and skilled professionals. But the professionals can combine grants to support ongoing studies, so there's a synergy which permits them to achieve quite a bit with little $$.

A seed grant program is a tremendous opportunity to tap into this great experience to "validate" a medical course. Exactly what we need.

We all know that a known doctor released a few papers recently. This release, in spite of the fact that the study was poorly conducted, based on his experience, raised the level of POIS to something at least "out of  the psychosomatic category". Failures in procedures however still present great problems of credibility.

However a properly conducted study, even if it did nothing more than validate what we already know would open the way to REAL acceptance.

First I expect we will do much more than validate what we already know. We will likely clearly identify the real cause, in black and white, and full validated and peer reviewed. And this identifiaction, may or may not involve auto-immune or testosterone or whatever. What interests me and all of us, is that we believe and trust what comes out of the study. With NORD and their level of commitment and experience in rare disorders THIS will happen.

Second. The validation if it doesn't identify a cure, will at least open a clear and real path to further in depth and certain investigation. It will validate for our local doctors, what we have and how it works and establish directions for treatment. And for us it will point to a real direction. We have seen how, once pointed in a direction, we can work quickly and efficiently in discovering remedies and new treatments. Imagine if now we are all pointing in the same direction, and whatsmore we have the backing of our local doctors.

I don't want to say that the seed grant will discover THE CURE, but without it, we will get very little further than we are now. We will continue to live without a real answer, we will be fighting between us becasue some believe one thing and others believe another, our doctors won't support us, and POIS remains as it is now, IN LIMBO.
« Last Edit: 23/09/2011 12:42:56 by daveman »
 

Offline mellivora

  • Sr. Member
  • ****
  • Posts: 152
    • View Profile
Post Orgasmic Illness Syndrome (POIS)
« Reply #14702 on: 23/09/2011 12:47:24 »
Very well said daveman
 

Offline EDS

  • Jr. Member
  • **
  • Posts: 36
    • View Profile
Post Orgasmic Illness Syndrome (POIS)
« Reply #14703 on: 23/09/2011 13:08:49 »
Could not have said it better, Daveman!
Great post!
My sentiments exactly!!
 

Offline mellivora

  • Sr. Member
  • ****
  • Posts: 152
    • View Profile
Post Orgasmic Illness Syndrome (POIS)
« Reply #14704 on: 23/09/2011 13:30:36 »
I tried to add the following comment to girlwind's youtube video. However, it wasn't accepted, probably because there is a weblink in the comment.
"This video was originally made to raise awareness of POIS amongst the public and medical community and to reach out to sufferers of this life-wrecking illness. Now, through the work of sufferers, POIS has been recognised by the National Organisation for Rare Disorders (NORD). It has taken years to get to this stage. The next stage is to secure a research grant to get this condition more thoroughly investigated and work toward an effective treatment/ cure. Sufferers are trying to raise $33500 through NORD's research grant scheme so that medical research into the condition can be launched and a treatment/ cure found. This is the minimum amount required to start the process. At the moment, all the money is coming from the sufferers themselves. If feel you can contribute even a small amount to this cause, you can do so at NORD's donation page. Select
"Post Orgasmic illness Syndrome (POIS)" from the research fund list at:
rarediseases.org/about/support/research-donations/fg_base_view_p3"

is anyone in touch with girlwind so she could perhaps add something along these lines to her description of the video. It might not have much impact but worth a shot.
 

Offline daveman

  • Neilep Level Member
  • ******
  • Posts: 1002
    • View Profile
Post Orgasmic Illness Syndrome (POIS)
« Reply #14705 on: 23/09/2011 18:18:33 »
mellivora,

See if you can put it up without the link. Maybe mention that they can go to the official NORD site and look up "donations to the POIS cause", without actually puting a link. Something is better than nothing I figure!

 

Offline mellivora

  • Sr. Member
  • ****
  • Posts: 152
    • View Profile
Post Orgasmic Illness Syndrome (POIS)
« Reply #14706 on: 23/09/2011 20:30:36 »
mellivora,

See if you can put it up without the link. Maybe mention that they can go to the official NORD site and look up "donations to the POIS cause", without actually puting a link. Something is better than nothing I figure!


Hi Daveman,
Yes I tried to look for a way of doing that, however searching for POIS on the NORD site doesn't bring any results. I struggled to find a way of navigating to a page that allows someone to specifically donate to the POIS fund without using the direct URL link...but I just figured it out. Done! But not ideal as my comments appear a little way down the youtube page
 

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • Posts: 8196
  • Thanked: 3 times
    • View Profile
Post Orgasmic Illness Syndrome (POIS)
« Reply #14707 on: 23/09/2011 23:25:02 »

mellivora,

See if you can put it up without the link. Maybe mention that they can go to the official NORD site and look up "donations to the POIS cause", without actually puting a link. Something is better than nothing I figure!



Hi Daveman,
Yes I tried to look for a way of doing that, however searching for POIS on the NORD site doesn't bring any results. I struggled to find a way of navigating to a page that allows someone to specifically donate to the POIS fund without using the direct URL link...but I just figured it out. Done! But not ideal as my comments appear a little way down the youtube page


mellivora, great work! Thank you.
 

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • Posts: 8196
  • Thanked: 3 times
    • View Profile
Post Orgasmic Illness Syndrome (POIS)
« Reply #14708 on: 23/09/2011 23:26:11 »


What exactly is the grant going to do to help find a cure?



Itsthatskater, good question and very valid:

If you think about it, our biggest problem is recognition! Few regular doctors recognize POIS as a disease or illness in itself. It is seen as something else, something existing and ranges from psychosomatic to who knows thyroid or Lyme disease or whatever.

Doctors are like a cross between engineers and lawyers. On one side technical and knowledagble about the science of the human body. But it is complex, so like lawyers, they base their decisions on past proven and documented cases. There's a very strict guidline as to how these documented cases and testing schemes should proceed, being, after all, that so much is based on the results.

The NORD research grant is a seed grant! Although it is costing us an arm and a leg to raise the $33,500, it's very little. It's barely the salary of one engineer for a year! Any research program will likely involve several very highly trained and skilled professionals. But the professionals can combine grants to support ongoing studies, so there's a synergy which permits them to achieve quite a bit with little $$.

A seed grant program is a tremendous opportunity to tap into this great experience to "validate" a medical course. Exactly what we need.

We all know that a known doctor released a few papers recently. This release, in spite of the fact that the study was poorly conducted, based on his experience, raised the level of POIS to something at least "out of  the psychosomatic category". Failures in procedures however still present great problems of credibility.

However a properly conducted study, even if it did nothing more than validate what we already know would open the way to REAL acceptance.

First I expect we will do much more than validate what we already know. We will likely clearly identify the real cause, in black and white, and full validated and peer reviewed. And this identifiaction, may or may not involve auto-immune or testosterone or whatever. What interests me and all of us, is that we believe and trust what comes out of the study. With NORD and their level of commitment and experience in rare disorders THIS will happen.

Second. The validation if it doesn't identify a cure, will at least open a clear and real path to further in depth and certain investigation. It will validate for our local doctors, what we have and how it works and establish directions for treatment. And for us it will point to a real direction. We have seen how, once pointed in a direction, we can work quickly and efficiently in discovering remedies and new treatments. Imagine if now we are all pointing in the same direction, and whatsmore we have the backing of our local doctors.

I don't want to say that the seed grant will discover THE CURE, but without it, we will get very little further than we are now. We will continue to live without a real answer, we will be fighting between us becasue some believe one thing and others believe another, our doctors won't support us, and POIS remains as it is now, IN LIMBO.




Very well said daveman



Could not have said it better, Daveman!

Great post!

My sentiments exactly!!



Too late to 2nd (second) it! I 3rd (third)  4th (fourth) It!!


 

Offline Vincent M

  • Sr. Member
  • ****
  • Posts: 285
    • View Profile
Post Orgasmic Illness Syndrome (POIS)
« Reply #14709 on: 24/09/2011 14:18:07 »
POIS RESEARCH FUNDING PLEDGE DATABASE

Guys, this is CRITICAL. Feedback, please!!


What do you think of yesterday's post by me and daveman?
http://www.thenakedscientists.com/forum/index.php?PHPSESSID=f1c91646606fe05966112da4a8b83702&topic=6576.msg367730#msg367730

What do you think of OUR OWN database pledge program? Or would you prefer to use  www.thepoint.com with someone else managing your donations (and tax deductions)?

Let's PLEASE get this out in the open! Post a reply. YOUR input is needed!

YOUR POIS-FREE FUTURE DEPENDS ON THIS, SO PLEASE SPEAK UP. NOW!!!

Seeing as The Point site only seems to use the pledge system we're already using the only advantage I see in using The Point is that it might allow us to spread awareness of our cause a bit more. However I'm not sure how much it would cost to use.

The pledge system we're using now is a great idea in my opinion.
« Last Edit: 24/09/2011 14:26:38 by Vincent Marcus »
 

Offline Vincent M

  • Sr. Member
  • ****
  • Posts: 285
    • View Profile
Post Orgasmic Illness Syndrome (POIS)
« Reply #14710 on: 24/09/2011 14:43:34 »
One downside of using The Point is that they take 5% of the amount raised. Also it seems one person would have to be the "funding recipient" and have their real name and address displayed. Perhaps we could just have NORD be the funding recipient though...

I'm not sure if it's worth it. The only pro I can still see is maybe it'll spread awareness a little, but I'm not really sure if or how that would happen either.
 

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • Posts: 8196
  • Thanked: 3 times
    • View Profile
Post Orgasmic Illness Syndrome (POIS)
« Reply #14711 on: 24/09/2011 22:00:21 »
VM, thank you, you're right, outside awareness will have no impact in my opinion.

It's hard enough to raise the $$ INSIDE!!
 

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • Posts: 8196
  • Thanked: 3 times
    • View Profile
Post Orgasmic Illness Syndrome (POIS)
« Reply #14712 on: 25/09/2011 02:26:27 »

We should be sending requests for donations to organizations and private donors who give money.  One or two outside donors could easily fund the minimum amount we need to get started.  I know somewhere there are lists of organizations that allocate money to charities and medical research to people who request and solicit them.  We should start soliciting these entities ASP.


Laurac, excellent idea! Can you take that on as a project as we pursue our own constituency?


I would but I start a clinical rotation on monday and I will barely have a enough time to complete regular activities of daily living. 


am going to see what i can do, do you have a clue where to start. And is anybody else willing to do it.


Here is a list I found for starters:
http://www.researchamerica.org/major_donors
« Last Edit: 25/09/2011 02:28:55 by demografx »
 

Offline B_Daniel

  • Sr. Member
  • ****
  • Posts: 288
    • View Profile
Post Orgasmic Illness Syndrome (POIS)
« Reply #14713 on: 25/09/2011 07:25:13 »
I've posted a new poll in the POIS Center titled "Why are you not donating?"  If you've voted, please mark the box "I've voted".  I would like everyone to please take this poll, whether you've donated or not.  It will provide us with important insight to help us reach our donation goals.  The poll will be completely anonymous.  Thank you for your help.

Here is the link:
http://poiscenter.com/forums/index.php?topic=219.0
« Last Edit: 25/09/2011 17:51:08 by B_Daniel »
 

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • Posts: 8196
  • Thanked: 3 times
    • View Profile
Post Orgasmic Illness Syndrome (POIS)
« Reply #14714 on: 25/09/2011 21:11:44 »
B_Daniel, many thanks for that poll!

We are already getting some answers to this perplexing fundraising question.
 

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • Posts: 8196
  • Thanked: 3 times
    • View Profile
Post Orgasmic Illness Syndrome (POIS)
« Reply #14715 on: 27/09/2011 00:36:26 »
Re: B_Daniel's poll (see his post above)
http://poiscenter.com/forums/index.php?topic=219.0




For the section "other" please, write us in a post what is this reason, it would help a lot (even if we are not in a quantitative marketing research... :P)



Habibou, excellent suggestion!

If you are someone who voted  "other" and are hesitant to post your reason, PLEASE send a Private Message CONFIDENTIALLY to either me, Daveman, or B_Daniel, the poll author. So we can better determine our status.

THANKS everyone who replied to the poll!!!!
 

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • Posts: 8196
  • Thanked: 3 times
    • View Profile
Post Orgasmic Illness Syndrome (POIS)
« Reply #14716 on: 27/09/2011 00:44:53 »


Since the last posted individual donor acknowledgement:

(1) A $50.00 POIS Research Fund donation came in!

Thank you, Donor 1!!





(2) A $100.00 POIS Research Fund donation came in!

Thank you, Donor 2!!


(3) Another $100.00 POIS Research Fund donation came in!

Thank you, Donor 3!!

G U Y S,   W E   C A N   D O   I T  !!!!!

« Last Edit: 27/09/2011 01:15:06 by demografx »
 

Offline Itsthatskater

  • Jr. Member
  • **
  • Posts: 30
    • View Profile
Post Orgasmic Illness Syndrome (POIS)
« Reply #14717 on: 27/09/2011 07:00:53 »
Guys im sorry if im coming on here and complaining too much but i cant take it, Im only 16 and this is giving me terrible anxiety to fall asleep in case i o in my sleep and get sick. I really dont want this to happen and do as much as possible to avoid this. I dont know what to do anymore.
 

Offline Mutant Man

  • Jr. Member
  • **
  • Posts: 17
    • View Profile
Post Orgasmic Illness Syndrome (POIS)
« Reply #14718 on: 27/09/2011 13:59:58 »
Itsthatskater.... Just wondering, what kind of nocturnal symptoms do you really exhibit? I do suffer a few myself. Thanks.
 

Offline jacksonsean

  • First timers
  • *
  • Posts: 6
    • View Profile
Post Orgasmic Illness Syndrome (POIS)
« Reply #14719 on: 27/09/2011 15:16:27 »
has anybody read this?

newbielink:http://www.mycandidacleanse.com/could-pois-post-orgasmic-illness-syndrome-be-candida/ [nonactive]

Would like to see what peoples reactions are
 

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • Posts: 8196
  • Thanked: 3 times
    • View Profile
Post Orgasmic Illness Syndrome (POIS)
« Reply #14720 on: 27/09/2011 19:34:08 »

I have just written to a major condom manufacturer asking for help with [POIS Medical Research] funds!


Thank you, mellivora!!

 

Offline CertainlyPOIS

  • Hero Member
  • *****
  • Posts: 727
    • View Profile
Post Orgasmic Illness Syndrome (POIS)
« Reply #14721 on: 27/09/2011 20:34:23 »
if you are north carolina and interested in dessensitization you can contact this doctor to see if he is willing to help.  He has experience with semen allergy.
http://www.wakehealth.edu/Faculty/Dykewicz-Mark-S.htm
 

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • Posts: 8196
  • Thanked: 3 times
    • View Profile
Post Orgasmic Illness Syndrome (POIS)
« Reply #14722 on: 27/09/2011 21:18:12 »

This place is to discuss ideas on getting outside funding.  You can come in drop your ideas and also propose ways you can help. You can also suggest a group that you think will be willing to donate to our cause.
I am going to be working on constructing a letter that can be send to businesses and groups on our behalf, am not a good writer so i will be posting what i wrote for some criticism.
Thanks. 



Nice thread, CC, and Thank You!
http://poiscenter.com/forums/index.php?topic=222.0
 

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • Posts: 8196
  • Thanked: 3 times
    • View Profile
Post Orgasmic Illness Syndrome (POIS)
« Reply #14723 on: 27/09/2011 21:25:53 »
has anybody read this?

http://www.mycandidacleanse.com/could-pois-post-orgasmic-illness-syndrome-be-candida/

Would like to see what peoples reactions are


"Candida" is a highly suspicious diagnosis in a field filled with quackery and hoaxes. There is a legitimate rare disorder, but usually this term, "Candida" has been (ab)used as a catchall term that includes just about everybody in the world (1 out of 3 people!) so that it can be "treated" with quack vitamins, nutrients, supplements, etc.
http://www.quackwatch.com/01QuackeryRelatedTopics/candida.html

« Last Edit: 27/09/2011 21:44:09 by demografx »
 

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • Posts: 8196
  • Thanked: 3 times
    • View Profile
Post Orgasmic Illness Syndrome (POIS)
« Reply #14724 on: 27/09/2011 21:47:16 »


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




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

Our new POIS Forum - architectural genius: "daveman" - for detailed subject-by-subject discussion!
http://www.POISCenter.com/forums/index.php
Our 4-year-old POIS thread here at Naked Science Forum will also always remain open for newcomers, for general unstructured discussion, and historical research of the 10,000+ postings here since 2007.

The Learning Channel's (TLC)  feature TV presentation on POIS, featuring our member here at this forum, "Animus". It was aired on May 22, 2011. Here is a link to the file for that TV documentary, "Desperate Measures", which can be downloaded and played. The segment starts at about 12:20..
http://www.fileserve.com/file/cUtJa9R/TITLE01.mp4

Our POIS Information Website, built by "mat780", is here:
http://sites.google.com/site/POISwebsite/

The POIS Information Website is home to the famous POIS Forum Compendium, written by "Pyropeach", and contains theories already discussed here and treatments that have both worked and failed.

Please see "B_Jim"'s POIS 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:

Our new POIS chatroom (realtime chat). Invite or visit another member(s) there, ANY TIME. We can all get to know each other better:
http://forums.delphiforums.com/POIS/chat

Post Orgasmic Illness Syndrome "POIS": Case report

Authors:
Abdalla M Attia*, Magda H Al-Ziny, Hossam A Yasien
*Corresponding author: Andrology Unit, Minoufiya University, Shibin El Kom, Eygpt

For more info, check out emi_b's  SMF POIS thread:
http://poiscenter.com/forums/index.php?topic=191.0;topicseen


Available Upon Request:

1. and 2. POIS Research Studies, 2011

These 2 papers reveal Dr. Waldinger's POIS autoimmune hypothesis and suggests one possible avenue of treatment.

3. First POIS Research Study, 2002

We have a copy of the first formal medical investigation on POIS by Prof. dr. Marcel D. Waldinger,MD,PhD, and Dr. Dave Schweitzer, MD.

  
4. Recent POIS Research Study, 2010

CASE REPORT
Postorgasm Illness Syndrome - A Spectrum of Illnesses
Jane Ashby, MRCP, and David Goldmeier, MRCP
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg316781#msg316781


5. British Medical Journal Case Report, 2010

Case study by Dr. Selwyn Dexter of a patient with a headache-featured POIS symptom treated with progesterone/norethisterone.
http://casereports.bmj.com/content/2010/bcr.10.2009.2359.short?rss=1


How to get any or all of the above 5 studies: send me or "daveman" a Private Message (PM) with your regular email address (use "AT" instead of "@" ) and we'll send you back the PDF(s).

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 the recipient's name, i.e., "demografx", or "daveman".


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 our credibility to the medical world - which often shows little understanding and is sometimes skeptical of our condition: POIS has scientific underpinnings and POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapeutic community. All of this information can greatly help you to fight the immediate reaction of some doctors: so just tell them, "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, which has already been referenced in respectable sources such as the Journal of Sexual Medicine (Dr. Waldinger's study), British Medical Journal and wikipedia:
http://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome

For over 4 years, our POIS forum has attracted over 200 POIS sufferers worldwide who have posted here, research on an additional 200 sufferers elsewhere on the internet, plus over 1,300,000 page visits. Not bad for a rare malady!



SEARCH THE FORUM WITH GOOGLE

We have an overwhelming amount of data: more than 4 years' worth of posts (over  10,000 posts!) from 200+ Forum members, and an additional 200 POIS sufferers found elsewhere on the Internet by Member B_Jim.

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

for example, I tried
nocturnal emission POIS site:http://thenakedscientists.com/

and 740 results came up for "nocturnal emission" within the 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#.





 

The Naked Scientists Forum

Post Orgasmic Illness Syndrome (POIS)
« Reply #14724 on: 27/09/2011 21:47:16 »

 

SMF 2.0.10 | SMF © 2015, Simple Machines
SMFAds for Free Forums
 
Login
Login with username, password and session length