Poll

Wish you could change the name of our condition?

Yes
No
Maybe

Author Topic: Change Condition Name  (Read 5051 times)

Willem

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Change Condition Name
« on: October 31, 2011, 11:45:57 AM »
Hey Guys, I know there is a lot of name recognition for "POIS", and the name itself is very accurate, and I appreciate every effort to increase awareness of this condition.  

However, since it includes the word "Orgasmic", this will never be a name that we can relate in mixed company.  I wish we had a more neutral name.  For example, the name "Crohn's disease" is very generic and I don't think people are embarrassed to say they have it, but if the condition were named "Constant Watery Diarrhea Syndrome" it would be a different story.  I would propose as an alternative, "Waldinger's Disease".  That way we could have a conversation like this:

"I have rare muscle condition."
"Oh really, what's the name?"
"Waldinger's disease.  It's an <<insert your favorite cause, mine is "autoimmune">> disease where the body has a reaction to some hormone, protein or substance produced by the prostate or reproductive tract."

What do you guys think?  
« Last Edit: October 31, 2011, 11:12:14 PM by Willem »

Daveman

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Re: Change Condition Name
« Reply #1 on: November 01, 2011, 11:37:01 AM »
It's not a bad premis.... It would be great to give it a generic name so that it can be talked about more freely, although someone in your group will look upt the (new) name and know what you REALLY have.

But the first problem you mention for the time being is a BIG one. Perhaps as we terminate the research, we can disconnect ourselves from the "present promotional name", because the new information and data will probably have much more value and accepted validity. With the research information we can make a BIG marketing pitch and attach whatever name we like to the syndrome.

As far as Dr. Waldinger, I think the same, once we REALLY know with valid data what it is, we can settle on an appropriate name.

I appreciate where Dr. W. has gotten us, but I'd really hate to find out that it wasn;t at all what he said it was and have to change the name again.

WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

Willem

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Re: Change Condition Name
« Reply #2 on: November 01, 2011, 11:58:13 AM »
Thanks for your thoughts Daveman.  Regarding people looking it up, someone eventually would.  The nice thing about having a generic name is that it doesn't define any of your symptoms.  Coming back to Crohn's disease, someone could have constipation or diarrhea, and the effected area could be anywhere in the gastrointestinal track (some areas are more embarrassing than others of course).  But when someone says "Crohn's disease", you don't know which symptoms they have.  All you know is that they have "issues".  It would be nice to get into that camp somehow.  For example, someone could look it up and still not know if your specific case is an autoimmune response to prostate fluids, semen, sperm etc. and they would figure, "Whatever the details are, they're personal." 

I do understand your point about not knowing the cause.  If some cases ARE caused by an autoimmune response, then those cases aren't necessarily caused directly by orgasm per se, so maybe POIS itself isn't the most accurate term. 

As time goes by, I'm becoming more open about my condition and would like to use a more generic name. 

Daveman

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Re: Change Condition Name
« Reply #3 on: November 01, 2011, 12:16:23 PM »
I like the idea. Just would like to find the best time, mainly to make best use of available publicity.

I tend toward auto-immune too BTW, but the field is still to open for my taste!!

Your success with SLIT is encouraging!

WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

Vincent M

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Re: Change Condition Name
« Reply #4 on: November 01, 2011, 02:18:54 PM »
Just say you have a disease called "P-O-I-S" and say it gives you brain fog, fatigue, and joint pains or whatever symptoms you get. No need to say that the letters stand for something.
Taking ginger tea, no wheat, fenugreek+green tea/garlic, saw palmetto, niacin, boswellia, huperzine, B complex and nutmeg. See my treatment summary post for more info: http://poiscenter.com/forums/index.php?topic=81.msg3513#msg3513

B_Daniel

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Re: Change Condition Name
« Reply #5 on: November 04, 2011, 08:52:10 PM »
Just say you have a disease called "P-O-I-S" and say it gives you brain fog, fatigue, and joint pains or whatever symptoms you get. No need to say that the letters stand for something.

Yeah, but then people immediately ask what POIS stands for.  This is a tough issue bc while I'd love to be able to discuss this more openly, our syndrome is so rare that the additional publicity we get from the name POIS seems to currently outweigh the benefit of having a more PC name.  I think once we figure out exactly what protein or whatnot we're allergic to, we can re-name POIS to something with that in the name.  

Ultimately, i'm a bit on the fence and if a great alternative name was thought of I would be supportive, but I think that unless we come up with that name, that for now, while POIS is still so undefined, the name POIS will suffice.

b_jim

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Re: Change Condition Name
« Reply #6 on: January 05, 2012, 03:11:39 PM »
I think it's ok.
Taurine = Anti-Pois
Suffering from lyme disease

Andy451

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Re: Change Condition Name
« Reply #7 on: January 22, 2013, 12:52:55 AM »
The "orgasmic" part of POIS can have a negative connotation and may be poorly received by a sexual uneducated society and sensationalist media because it is not fully understood. The exact name of our condition should be taken into great consideration when researchers determine the precise causes of the syndrome.

I have tested this theory on a micro-scale, and trust me people are way more open to "immune disorder" or "hormonal imbalance" then anything w/ the word orgasm or sex in it. People respond to pleasurable and funny topics in relation to sex issues, not outright negative ones.

POIS is OK for now especially for our own understanding of identity, but not truly reflective of what may be understood about the syndrome in the future.   
28 yo M- POIS for 16yrs (since age 12). Chronic POIS- always there

Tried desensitization for 1.5yrs & was unsuccessful (POIS worse at 1/1000)

 Exercising- (running/light weights/situps/yoga) Ice my perineum. Gluten-free. Supplements- limited success.Meds- Oxcarbazepine/Buspar (past-Depakote10yrs)