Author Topic: Writing an Article About POIS  (Read 7361 times)

StevenBlum1986

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Writing an Article About POIS
« on: October 02, 2016, 01:44:38 AM »
Hello there,

My name is Steven Blum and I'm a freelance writer for Vice, the Daily Dot, The Stranger and other publications. I'm writing a story about POIS and I was wondering if anyone in this forum would be interested in answering a few questions. It can be over email and anonymous! Unfortunately, my deadline is quite tight so it'd have to be in the next few days. If you're interested, let me know! My email is stevenleoblum@gmail.com. Thank you!

Best,

Steven Blum

Quantum

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Re: Writing an Article About POIS
« Reply #1 on: October 02, 2016, 08:54:12 AM »
Hi Steven,

Thanks for your interest in POIS, which is a rare disorder and is still unheard of for almost everybody, even doctors and other health professionals .  We are pleased to have an opportunity to make POIS better known.

I will contact you in PM and by e-mail, so that you can ask me questions.  Your deadline is short, but if you send me your questions during the day, I will be able to answer you this evening.  I will also have some time off on Monday.

Other members may also show interest in answering your questions as well.  I would be surprised if you would not gather sufficient information to complete your story.

If you wanr to, you can even post your questions here, and members interested may send you their answers by e-mail.



« Last Edit: October 02, 2016, 05:02:23 PM by Quantum »
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

demografx

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Re: Writing an Article About POIS
« Reply #2 on: October 02, 2016, 01:04:39 PM »
Hi Steven,

Thank you for contacting us.

Our malady is so obscure, I'm curious as to how you first found out about it and became interested in POIS?
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

MirkoThiel0

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  • wenn du deutsch bist dann schreib mich an :)
Re: Writing an Article About POIS
« Reply #3 on: October 02, 2016, 07:36:21 PM »
oh yea im glad that you writhe something about our disease , im gona contect you, but maybe it would be more easy to just ask it in this forum, you can also make a forum survey with in 20 seconds.
im very happy about your doing, we need all media attention we can get.

StevenBlum1986

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Re: Writing an Article About POIS
« Reply #4 on: October 02, 2016, 08:24:38 PM »
Hi there,

I can post a few questions here, if you'd like.

I'm trying to paint a more cohesive picture of this misunderstood syndrome and write about it in a way that's emotionally resonant so some of the questions are personal and you might be more interested in messaging me privately.

When did you first realize you had POIS? Can you describe what the sensation was like? How did you react to it?

Did you have a partner at the time? How did you choose whether to disclose or not disclose? If you did disclose, how did they react?

When did you first join POIS Center? What was it like connecting with other sufferers?

When did you first contact a doctor about your condition? How did they respond? (Did they take you seriously?) What kinds of treatments did they tell you to try? What treatments have actually worked for you?

What?s hardest about having this syndrome? What would you tell someone who thinks they might be suffering from it?

Are you in a relationship? If you are, how have you coped with the symptoms of POIS within the context of the relationship? If you aren't, is it by choice?

If you'd like to send me answers via email, that's also fine! Stevenleoblum@gmail.com is my email address, as I said above. I found out about POIS from a colleague at Vice. I've since read Waldinger's, Komisaruk's and Goldmeier's studies.
« Last Edit: October 02, 2016, 08:26:23 PM by StevenBlum1986 »

demografx

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Re: Writing an Article About POIS
« Reply #5 on: October 03, 2016, 10:40:53 AM »

I found out about POIS from a colleague at Vice. I've since read Waldinger's, Komisaruk's and Goldmeier's studies.
Very impressive.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

MirkoThiel0

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Re: Writing an Article About POIS
« Reply #6 on: October 05, 2016, 11:17:22 AM »
hey StevenBlum
did you even get my last 2 mails ?

Quantum

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Re: Writing an Article About POIS
« Reply #7 on: October 08, 2016, 01:12:56 PM »
Great news, Steven Blum's article about POIS is up on the internet, at https://melmagazine.com/these-guys-will-do-anything-to-avoid-coming-279fc4eb1a8b  .

( Steven have asked them to change the title to "When an Orgasm Can Destroy Your Life", but the URL have kept trace of the previous title, as you can notice. )

It is published on MEL, an online men magazine, founded in 2015 in Los Angeles by Dollar Shave Club.

Thanks to Steven for this article, it gives positive exposure to POIS, and links to poiscenter as well.
« Last Edit: February 06, 2018, 09:34:00 AM by Quantum »
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

demografx

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Re: Writing an Article About POIS
« Reply #8 on: October 09, 2016, 09:50:32 AM »

Teriffic, Quantum!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

COLM_2

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Re: Writing an Article About POIS
« Reply #9 on: October 09, 2016, 12:19:51 PM »

Teriffic, Quantum!
Well done Quantum and other contributors. Might be a helpful as a stock item for credibility.

Colm
Formerly user COLM (previous username accidentally deleted). Few decades with POIS.

demografx

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Re: Writing an Article About POIS
« Reply #10 on: October 09, 2016, 02:17:19 PM »

Teriffic, Quantum!


And as COLM points out:


Teriffic, Other Contributors!


« Last Edit: October 09, 2016, 02:44:56 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: Writing an Article About POIS
« Reply #11 on: October 09, 2016, 02:35:02 PM »
« Last Edit: October 09, 2016, 02:46:37 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: Writing an Article About POIS
« Reply #12 on: October 09, 2016, 02:41:10 PM »
I just emailed the above applause graphic to Steven Blum...a thank you from POISCenter!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: Writing an Article About POIS
« Reply #13 on: October 09, 2016, 03:56:47 PM »
Mr Blum wrote back immediately to say thank you to everyone for the appreciation.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

certainlypois2

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Re: Writing an Article About POIS
« Reply #14 on: October 09, 2016, 05:01:04 PM »
fantastic, best article yet

demografx

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Re: Writing an Article About POIS
« Reply #15 on: October 10, 2016, 01:42:36 AM »



fantastic, best article yet



I agree, CP2!

I also showed the above article to Dr Chris Smith (M.D.), owner of The Naked Scientists Forum (which - as you know - has a 10-year old POIS thread).

He just now emailed me:

"Good stuff - pleased to see that people are taking notice."

« Last Edit: October 10, 2016, 02:14:00 AM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Marcusq

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Re: Writing an Article About POIS
« Reply #16 on: October 15, 2016, 07:59:30 AM »

COLM_2

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Re: Writing an Article About POIS
« Reply #17 on: October 15, 2016, 03:39:50 PM »
Thanks very much for finding and for sharing that Portuguese article about the syndrome from BBC website Marcusq,

That is a pretty big deal IMO, to have the illness and the Rutgers research covered by as big an organisation as the BBC.

Have to confess having had this for over 40 years, it feels a bit emotional to see this getting some credible coverage.

I used Dr. Google translate to put it in English.

Not factually perfect, but it certainiy adds to credibility alongside other recent article.

The BBC article translated to English.

The rare post-orgasm syndrome that affects only men
 
....Under the 1st photo:
The difference in symptoms between patients complicates the search for a cure
 
For a group of men diagnosed with a rare syndrome experience, an orgasm cannot be linked to pleasure.
 
This occurs because the syndrome of post-orgasmic illness (AS, its acronym in English), a problem that affects men only.
 
Symptoms range from fatigue and fever to diarrhea and occur as a result of an orgasm.
 
The disease was identified in 2002 by Dutch scientist Marcel Waldinger, a neuropsychiatrist at the University of Utrecht in the Netherlands.
 
And yet, the doctor managed to find a little more than 200 men suffering from this syndrome.
 
But he adds that the disease may be more common than the numbers indicate.
 
Generally, many men do not talk about the problem because of the shame and confusion that cause the symptoms. Others even know they have the syndrome.
 
Causes?
 
Since its discovery, scientists have identified several possible causes of a possible allergy to their own semen to a neurobiological disorder.
 
Some patients face the disorder throughout adult life, called "Primary POIS" In other cases, nicknamed "AS Acquired", the disease develops over the years.
 
This led Waldinger to believe that the problem could have a psychological basis.
 
In 2016, it carried out a new study of 45 men suffering from the disease and analysis of the results led to new theories to explain the origin of POIS.
 
The researchers added to the list of causes an autoimmune reaction to seminal plasma. Scientists believe that this allergic reaction can be treated with regular injections of diluted semen.
 
This treatment is still experimental, and it was only administered in two patients.
 
Other heading under second picture.
Hundreds of men worldwide have been identified as patients suffering from the disease and she was recently recognized by the National Association of Rare Diseases
 
The latest Marcel Waldinger report also states that the syndrome could be linked to a dysfunction of the pituitary gland and also to testosterone deficiency.
 
Barry Komisaruk, scientist specializing in neuronal responses to sexual stimuli and director of the Biomedical Research Program at Rutgers University in Newark, United States, also started his own research.
 
In a theory developed by Komisaruk the cause of the disease is linked to the Vagus nerve, a cranial nerve that sends impulses to almost every organ.
 
Komisaruk says that in cases of men who suffer from the syndrome, this nerve could be stunted.
 
"Many of the symptoms that patients experience are mediated by the vagus nerve," he said.
 

Symptoms
 
Among the symptoms Waldinger identified in patients suffering from the disease is extreme tiredness, memory difficulties and problems of concentration.
 
About 85% of the Dutch medical patients suffer from it
 
They also suffer from weakness of the muscles, fever or extreme sweating, diarrhea, chills, mood changes, often irritability, incoherent speech, nasal congestion and burning eyes.
 
All symptoms appear after orgasm, seconds, minutes or a few hours after ejaculation.
 
To make matters worse, most of these symptoms can last between two and five days.
 
Difficult to treat.
 
Men who suffer from the syndrome of post-orgasmic illness participate in a forum to share their experiences, the Forum POIS Center, and talk about tricks to try to circumvent the symptoms.
 
Some believe that the syndrome had psychological causes.


But changes of symptoms of a patient to another makes the development of a single treatment even more difficult.
 
Patients have tried treatments based on vitamins and testosterone patches, plus the elimination of all dairy products from their diets.
 
Others, already in despair, take sedatives and antibiotics.
 
However the bad news is that, to date, the only measure that really seems to work is sexual abstinence.
 
And because researchers do not yet know the cause or exact causes of the problem, the development of an effective remedy is complicated.
 
But, as stated by many users of the Forum POIS Center, the important thing for now is to spread (awareness) of  the disease further. With more people talking about the syndrome and knowing the disease, the greater the chances of finding a cure.

End of Article....

Regards,
Colm
« Last Edit: October 15, 2016, 03:44:00 PM by COLM_2 »
Formerly user COLM (previous username accidentally deleted). Few decades with POIS.

COLM_2

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Re: Writing an Article About POIS
« Reply #18 on: October 15, 2016, 03:49:46 PM »
Thanks very much for finding and for sharing that "Brazilian Portuguese" article from yeterday, about the syndrome from BBC website Marcusq,

That is a pretty good deal IMO (even if not new news), to have the illness and the Rutgers research covered by as big an organisation as the BBC.

I have used Dr. Google translate to put it into English below.

Not factually perfect in content (Waldinger 2016 etc), but it certainly adds to credibility alongside other recent article.

The BBC article translated to English.

The rare post-orgasm syndrome that affects only men
 
....Under the 1st photo:
The difference in symptoms between patients complicates the search for a cure
 
For a group of men diagnosed with a rare syndrome experience, an orgasm cannot be linked to pleasure.
 
This occurs because the syndrome of post-orgasmic illness (AS, its acronym in English), a problem that affects men only.
 
Symptoms range from fatigue and fever to diarrhea and occur as a result of an orgasm.
 
The disease was identified in 2002 by Dutch scientist Marcel Waldinger, a neuropsychiatrist at the University of Utrecht in the Netherlands.
 
And yet, the doctor managed to find a little more than 200 men suffering from this syndrome.
 
But he adds that the disease may be more common than the numbers indicate.
 
Generally, many men do not talk about the problem because of the shame and confusion that cause the symptoms. Others even know they have the syndrome.
 
Causes?
 
Since its discovery, scientists have identified several possible causes of a possible allergy to their own semen to a neurobiological disorder.
 
Some patients face the disorder throughout adult life, called "Primary POIS" In other cases, nicknamed "AS Acquired", the disease develops over the years.
 
This led Waldinger to believe that the problem could have a psychological basis.
 
In 2016, it carried out a new study of 45 men suffering from the disease and analysis of the results led to new theories to explain the origin of POIS.
 
The researchers added to the list of causes an autoimmune reaction to seminal plasma. Scientists believe that this allergic reaction can be treated with regular injections of diluted semen.
 
This treatment is still experimental, and it was only administered in two patients.
 
Other heading under second picture.
Hundreds of men worldwide have been identified as patients suffering from the disease and she was recently recognized by the National Association of Rare Diseases
 
The latest Marcel Waldinger report also states that the syndrome could be linked to a dysfunction of the pituitary gland and also to testosterone deficiency.
 
Barry Komisaruk, scientist specializing in neuronal responses to sexual stimuli and director of the Biomedical Research Program at Rutgers University in Newark, United States, also started his own research.
 
In a theory developed by Komisaruk the cause of the disease is linked to the Vagus nerve, a cranial nerve that sends impulses to almost every organ.
 
Komisaruk says that in cases of men who suffer from the syndrome, this nerve could be stunted.
 
"Many of the symptoms that patients experience are mediated by the vagus nerve," he said.
 

Symptoms
 
Among the symptoms Waldinger identified in patients suffering from the disease is extreme tiredness, memory difficulties and problems of concentration.
 
About 85% of the Dutch medical patients suffer from it
 
They also suffer from weakness of the muscles, fever or extreme sweating, diarrhea, chills, mood changes, often irritability, incoherent speech, nasal congestion and burning eyes.
 
All symptoms appear after orgasm, seconds, minutes or a few hours after ejaculation.
 
To make matters worse, most of these symptoms can last between two and five days.
 
Difficult to treat.
 
Men who suffer from the syndrome of post-orgasmic illness participate in a forum to share their experiences, the Forum POIS Center, and talk about tricks to try to circumvent the symptoms.
 
Some believe that the syndrome had psychological causes.

But changes of symptoms of a patient to another makes the development of a single treatment even more difficult.
 
Patients have tried treatments based on vitamins and testosterone patches, plus the elimination of all dairy products from their diets.
 
Others, already in despair, take sedatives and antibiotics.
 
However the bad news is that, to date, the only measure that really seems to work is sexual abstinence.
 
And because researchers do not yet know the cause or exact causes of the problem, the development of an effective remedy is complicated.
 
But, as stated by many users of the Forum POIS Center, the important thing for now is to spread (awareness) of  the disease further. With more people talking about the syndrome and knowing the disease, the greater the chances of finding a cure.

End of Article....

Regards and thank you for this contribution MacusQ,
Colm</b?
>
« Last Edit: October 15, 2016, 04:04:55 PM by COLM_2 »
Formerly user COLM (previous username accidentally deleted). Few decades with POIS.

demografx

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10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business