Author Topic: Wikipedia articles about POIS in different languages  (Read 7250 times)

BluesBrother

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Wikipedia articles about POIS in different languages
« on: February 22, 2014, 04:34:32 PM »
Dear all,
this is my first post in this forum. First of all, many thanks to the administrators for their great work - and then, thanks to all of you for your posts! Thanks to this forum, I figured out that taking Niacin mitigates my symptoms. I also admire all your efforts in collecting money for funding new research. I think more research is the way to go, and I think you have done a great job pushing for that. Now to the topic of this post:

I have been living with POIS for 10 years until I figured out that it existed. All my searches on the internet failed for a long time. Of course, I was not searching for POIS but for terms such as 'ejaculation', 'masturbation' and 'orgasm', together with words for my symptoms. We need to enable people to figure out faster that they might be suffering from POIS. I therefore suggest the following:

- We should write Wikipedia articles about POIS in different languages (I've gone ahead and written one in German: http://de.wikipedia.org/wiki/Postorgasmic_Illness_Syndrom )
- We should make sure that other related articles link to the main POIS article in the respective language. Candidates are

* Ejaculation
* Masturbation
* Orgasm
* Sexual intercourse
* Sperm allergy

I have suggested such links in the English Wikipedia (since I am a new editor, I was not allowed to edit some of the articles about the suggested topics. If you are an experienced Wikipedia editor, it would be great if you could include links to the main POIS article into related topics.)

I know that this forum is consulted by people from different countries. Not everyone with POIS speaks, or searches in English. Let's enable people to figure out that they have POIS faster.
Used to have brain fog, flue-like symptoms, un-refreshing sleep, extreme exhaustion, muscle and joint pain, digestive problems, social anxiety, urge to urinate frequently.
Used niacin in the past. Now using nanna1's maintenance stack. Exhaustion and brain fog now main problem. 3-day POIS cycle

Colm

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Re: Wikipedia articles about POIS in different languages
« Reply #1 on: February 22, 2014, 04:58:09 PM »
Great idea Blues Brother. I similarly spent over a couple of decades searching under those terms, finding nothing
and only found the POIS forum I don't know how, 6 months or so back.

Nightingale

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Re: Wikipedia articles about POIS in different languages
« Reply #2 on: February 22, 2014, 07:58:30 PM »
I have never edited Wikipedia, but this deserves some attention. So many people look to Wikipedia for answers
Turmeric and Rosemary 30-45 minutes before orgasm for anti-inflammatory and immune support has helped me a lot. Faster and easier than niacin approach.

BluesBrother

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Re: Wikipedia articles about POIS in different languages
« Reply #3 on: February 23, 2014, 04:29:21 PM »
Editing Wikipedia is not difficult and there are good tutorials. The article about POIS on the German Wikipedia was also my first article.

- On the English Wikipedia there is now a link to POIS in the "See also" section of the article about "Orgasm", http://en.wikipedia.org/wiki/Orgasm
- POIS is now also linked in the article "Masturbation"  in the section "Health and psychological effects - General benefits and risks", http://en.wikipedia.org/wiki/Masturbation#Health_and_psychological_effects
- There was already a link from the article about "Ejaculation", http://en.wikipedia.org/wiki/Ejaculation#Health_issues
Used to have brain fog, flue-like symptoms, un-refreshing sleep, extreme exhaustion, muscle and joint pain, digestive problems, social anxiety, urge to urinate frequently.
Used niacin in the past. Now using nanna1's maintenance stack. Exhaustion and brain fog now main problem. 3-day POIS cycle

demografx

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Re: Wikipedia articles about POIS in different languages
« Reply #4 on: February 23, 2014, 07:33:13 PM »
Welcome, BluesBrother!

EXCELLENT suggestions, BB! And many thanks for your nice Forum compliments.

Just in case you missed our Welcome Page:

http://poiscenter.com/forums/index.php?topic=1.msg1#msg1

A little off topic, but I would love to see us also reach non-computer-literate POISers worldwide as well! Any ideas? If so, let's start a thread about it.



« Last Edit: February 23, 2014, 07:39:01 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

BluesBrother

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Re: Wikipedia articles about POIS in different languages
« Reply #5 on: May 03, 2014, 04:21:17 AM »
A little off topic, but I would love to see us also reach non-computer-literate POISers worldwide as well! Any ideas? If so, let's start a thread about it.
I agree that it would be good to reach out to non-computer-literate POISers. I think that a first step could be starting a patient organization (NORD has some good advice how to go about this) to give us the proper credentials when reaching out to people. We could then send out information to GP's, urologists, etc.

However, taking into account how difficult it still is for computer-literate POISers to figure out that they actually have this condition, I would consider reaching out to computer-literate POISers a priority. We should think back how we figured out about POIS ourselves. I would guess that people usually google the symptoms - and if they are lucky they eventually end up at Wikipedia or some other page mentioning POIS.

As I mentioned before, we should write Wikipedia articles about POIS in different languages. Moreover, these should be linked from related topics. For example, in the English Wikipedia there are now links to the article about POIS from the articles on "Orgasm" and "Masturbation". Other pages which should link people to the Wikipedia article about POIS - or even to this forum - include sites like Yahoo Answers in which people discuss related symptoms. Maybe you guys have more ideas...

Also, I would be in favor of reviving the website poiscenter.com (I don't mean the forum, which is great - I mean the website). I would be volunteering for setting up a WordPress based page on which we should collect information about POIS - and also allow people to donate money to fund future research. The current website appears to be a bit abandoned.
Used to have brain fog, flue-like symptoms, un-refreshing sleep, extreme exhaustion, muscle and joint pain, digestive problems, social anxiety, urge to urinate frequently.
Used niacin in the past. Now using nanna1's maintenance stack. Exhaustion and brain fog now main problem. 3-day POIS cycle

youcefrouiba

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Re: Wikipedia articles about POIS in different languages
« Reply #6 on: May 03, 2014, 08:45:06 AM »
i will do it in arabic

Colm

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Re: Wikipedia articles about POIS in different languages
« Reply #7 on: May 04, 2014, 08:38:32 AM »
I think overall that it would be a good idea if the community can use Wiki, along with search engine strategies and other methods, to bring people to POIS forum.

Like others, I would contribute to writing content / blogs to help the forum to be found on google etc.

Having the site found under POIS would have limited value, as I know most who somehow find this forum, are NOT searching under those terms.

For years, I periodically searched under everything except Post Orgsasmic Illness, and never found anything either, even though this and Naked Science forum (NSF) were there.

Additionally, I am wondering if it is better to do this when we have more real help to offer, rather then just a community or are actually closer to a real cure.

No disrespect to anyone and I genuinely appreciate the great efforts that have gone on to get this community so far and fund the research of course.

Unfortunately, it also becomes a very frustrating experience when you find this forum and realise how long it takes to get valid research going. And then there will probably be more needed after that.

As the digestion and dietary theories unfold, would it somehow be better to try and assess a way of having a nutritional scientist or some other credible medical nutrition person to look through all of the many many supposed cures / symptom reduction methods, and to bring it down to a core of 3 - 5 methods of symptom management with POIS sufferers.

There are so many hundreds of credible posts and so much conflicting information, and of course everyone has a different makeup.

But it was interesting the mini survey that seems to suggest we are all possibly experiencing mineral absorption issues, and don't seem to have much obesity in our group, as a tendency.

The vision is a Cure of course, but if that is some way off, it'd be great to have more defined credible valid strategies for symptom reduction. For me, Niacin started well, but then had some effects that scared me away from it. Would a nutritional scientist work with ideas and areas like Niacin and validate how can we use it and be sure it won't damage a person.

Like many poisers, I am probably not thinking clearly here, but thinking outside the box is needed, and when I read the recent poster who met Waldinger - whom he said does not believe in the vagal nerve theory, you wonder why (maybe cause he wants to own his own cure) and then you wonder what next after vagal MRI's, if it does no more than rule it out as a contributor.

If we get more hundreds of men online here, without any way of analyzing their experiences in trying things, then it becomes a more frustrating journey on the community forum, unless someone can analyze what works / what doesn't work.

Do we need to think outside the box more, like if we did get more hundreds to the site and had more visibility / publicity, can we get access to funds to validate nutrition / absorption theories and other theories.
« Last Edit: May 04, 2014, 08:49:10 AM by Colm »

BluesBrother

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Re: Wikipedia articles about POIS in different languages
« Reply #8 on: May 04, 2014, 02:27:10 PM »
i will do it in arabic
Great!

Having the site found under POIS would have limited value, as I know most who somehow find this forum, are NOT searching under those terms.

I agree. That's why it is essential that related search terms or Wiki pages lead/link to articles about POIS - and potentially to this forum. Finding information becomes so much easier, once there is a term for one's condition.

Additionally, I am wondering if it is better to do this when we have more real help to offer, rather then just a community or are actually closer to a real cure.

No disrespect to anyone and I genuinely appreciate the great efforts that have gone on to get this community so far and fund the research of course.

Unfortunately, it also becomes a very frustrating experience when you find this forum and realise how long it takes to get valid research going. And then there will probably be more needed after that.

True, seeing that research takes its time can be frustrating. However, I am very happy to have found this forum. Niacin largely reduces my symptoms. Moreover, the patterns concerning behavior, supplements, hormone treatments and diet experienced by the users of this forum can streamline experimentation, as we are learning from each other. This alone should be reason enough to help people figure out that they have POIS. But it goes beyond just that. As you rightly write, there will probably be more research needed. Reading that there is no cure for other autoimmune conditions yet - after hundreds of studies - I actually think that there will be MUCH MORE RESEARCH needed. The likelihood of this research happening depends largely on the number of people who know that they are suffering from POIS - for two reasons:

First, the larger the known number of sufferers, the higher the chance that there will be outside funding for research on POIS.

Second, a larger base of patients makes it easier to fund research ourselves. The forum has made a great step into this direction. With more people knowing about their condition, we can fund more research.

As the digestion and dietary theories unfold, would it somehow be better to try and assess a way of having a nutritional scientist or some other credible medical nutrition person to look through all of the many many supposed cures / symptom reduction methods, and to bring it down to a core of 3 - 5 methods of symptom management with POIS sufferers.

I also think that nutrition can play a key role in handling symptoms. I am currently reading up on the (non-scientific) literature about handling autoimmune symptoms by dietary adjustments. (This mostly boils down to no gluten, limited dairy etc.) We need more exchange about this - the more people, the better.

But it was interesting the mini survey that seems to suggest we are all possibly experiencing mineral absorption issues, and don't seem to have much obesity in our group, as a tendency.

I also envision us having more surveys. Here, a larger patient base means more statistical power.

For me, Niacin started well, but then had some effects that scared me away from it. Would a nutritional scientist work with ideas and areas like Niacin and validate how can we use it and be sure it won't damage a person.

I am sorry to hear this. In my opinion, monitoring should be done be everyone's GP (as you rightly write, everyone may respond differently). I completely agree that the role of Niacin in POIS needs to be better understood.

when I read the recent poster who met Waldinger - whom he said does not believe in the vagal nerve theory, you wonder why (maybe cause he wants to own his own cure) and then you wonder what next after vagal MRI's, if it does no more than rule it out as a contributor.

Let's hope the research at Rutgers will bring us closer to a treatment or cure. If it should only rule out one explanation, that would be progress as well.

If we get more hundreds of men online here, without any way of analyzing their experiences in trying things, then it becomes a more frustrating journey on the community forum, unless someone can analyze what works / what doesn't work.

Yes, it can be frustrating and time consuming to browse through all the posts. I think we should design an encompassing survey. (I know that there have been surveys on sub-questions and I also greatly appreciate the work of the people who collected the information from numerous posts in central articles). Also, we should consider founding a patient organization, having a newsletter, etc.
Used to have brain fog, flue-like symptoms, un-refreshing sleep, extreme exhaustion, muscle and joint pain, digestive problems, social anxiety, urge to urinate frequently.
Used niacin in the past. Now using nanna1's maintenance stack. Exhaustion and brain fog now main problem. 3-day POIS cycle

Colm

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Re: Wikipedia articles about POIS in different languages
« Reply #9 on: May 05, 2014, 02:08:12 AM »
Appreciate you reading my post on this topic, and it is a topic (the ultimate 'Wiki Leaks'), that hopefully will maintain momentum and some actions that we take responsibility for.

BB Said
"I also think that nutrition can play a key role in handling symptoms. I am currently reading up on the (non-scientific) literature about handling autoimmune symptoms by dietary adjustments. (This mostly boils down to no gluten, limited dairy etc.) We need more exchange about this - the more people, the better."

I was reading some of this material also and just to say, (and I will report back on results), I recently invested in a comprehensive IGg Food intolerances test, featuring a blood test, analyzed in Cambridge, UK, assessing any intolerance I may have had, to 250 food items.

It is suggested that food intolerances impact auto immune responses.

My results showed up exceptionally high food intolerances to Milk (Cow, Goat, Sheep and Soya), cheeses and also Wheat, but NOT Gluten.

Two weeks back - as I was eating all of these to some level - I commenced an elimination strategy (removed all items from the diet), which is suggested for 3 Months, and so far am mainly dealing with withdrawal symptoms, and not noticing any benefit yet.

I am mildly skeptical, but will see.

I will report back on whether it has a positive impact on digestion, or any POIS symptoms.
« Last Edit: May 05, 2014, 04:06:04 AM by Colm »

BluesBrother

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Re: Wikipedia articles about POIS in different languages
« Reply #10 on: July 20, 2014, 04:01:29 PM »
My results showed up exceptionally high food intolerances to Milk (Cow, Goat, Sheep and Soya), cheeses and also Wheat, but NOT Gluten.
Intolerance to wheat but not gluten seems to be a common phenomenon: http://chriskresser.com/is-gluten-sensitivity-real
Used to have brain fog, flue-like symptoms, un-refreshing sleep, extreme exhaustion, muscle and joint pain, digestive problems, social anxiety, urge to urinate frequently.
Used niacin in the past. Now using nanna1's maintenance stack. Exhaustion and brain fog now main problem. 3-day POIS cycle

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

FloppyBanana

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Re: Wikipedia articles about POIS in different languages
« Reply #12 on: July 21, 2014, 07:59:15 AM »
I can't touch any wheat but other gluten is fine. I have a massive headache at the moment because I went for a meal Chinese Saturday, explained at some length I can't each wheat of any sort. Yet I'm sure the pork must have had soy sauce in it (which contains wheat), hence I have been sick for two days now. I'm not sue how relevant to this thread my point is and if it relates to POIS. Do we have allergies and tolerances as part of our questionnaire?
I think we should if we don't. May help to rule out non-vagal nerve POISers.
30 years of POIS. Mytelase after O with Iceman breathing technique.