Author Topic: Members' Compilation and Suggestions for POIS Summary  (Read 63570 times)

LAPOISSE

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Re: Members' Compilation and Suggestions for POIS Summary
« Reply #90 on: July 25, 2013, 04:09:26 AM »
Hi All,

I don't see the point of this conversation ; it should be no restrictions in express our point of views ; For me in medecine, and especially with new disease, nobody should be 100% sure of anything ; I don't support desens because it does not fit to my experience but it could be helpfull as long as it done by a profesionnal...I dont think POIS is 100% somatic, but I  believe that is involved is the POIS Loop and working on it surely help to have a better life..I'm strongly against any form of sensor and i really dont' understand why you closed trader post.
If somebody can help himself with a concentration method to the point to not fell POIS symtoms, it means it works somehow..and he his not the first one. Maybe POIS in a physical disease that need to ingredient to be triggered ; stress and orgasm ;
We should stay open to any possibility until we know more about POIS ; So far we have no any kind of certitude

Daveman

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Re: Members' Compilation and Suggestions for POIS Summary
« Reply #91 on: July 25, 2013, 07:54:00 AM »
Daveman,

No problem at all, I'll move to NSF.
But you know how the NSF works, you post something and it gets lost in space and time. Not the better place to share information.

You have created this site that Right now is the biggest pois community in the world. It is very well done I have to say and the arguments are well categorized. Me and many others in this forum have expressed many times our gratitude for your efforts.

The moderation has been good until few days ago, then you have lost the control over it because you are quite busy, you and Demografx are the only 2 moderators here.
I actually understand you, you are doing what you can.

But you cannot say to people that they are not suffering of pois  nor you can ban them because you cannot control the forum anymore.
This site is your powerful creature, but at this point there is no way back. People is coming here looking for some hope.
This is  big responsibility as well.

I think you just need to let some other users help you in your role. we need more moderators, maybe one for each section, and give them the keys.
Just my suggestion.
 

I've been very busy on a personal level for over a year and a half, so the local problems aren't necessarily because  of that.

We have one of the largest POIS forums in the world, for several reasons, one is a better "order" than the competition, but that's only a part. Another is the moderation.

We have dedicated to keeping the forum "clean". Every time there is aggression or hijacking of the forum, numbers drop. The silent majority don't want the noise. You may not see it, it may even appear that there is more traffic when this happens, but the numbers below the scenes tell the truth. Of the 800 members, maybe 80 post regularly. If 5 of those get rowdy it seems like there is more activity, but the rest fade away and readership drops significantly.

My mistake was "being too lenient" too late.As it gets out of hand it gets more difficult to manage. If individuals want to make points they are asked to do so in a responsible manner. If they don't they will become a problem.

Another BIG reason we are here is for the grant. Why people resist professional research I'll never understand. Are egos so big that they prefer to go in circles for ever rather than get down to a real solution?

We are here, for those who want to share responsibly and for those who are waiting to see what the experts really have to say. For several years we have understood that the eternal tail chasing conjecture would get us nowhere. So we did something about it.

I know that my theory is as good as any, and none other than true professional evaluation has much value at all. That's why I just prefer not to get into deep theories and "methods". Responsible sharing of things that help "fine", but none is the cure all solution.

So as you say, "This site is your powerful creature, but at this point there is no way back. People is coming here looking for some hope.
This is  big responsibility as well."

Here-  there is more hope than anything, "Professional Research".
There - well, it's a free world. Your options are open, you are free to visit either, but our rules are our rules.
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!

Daveman

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Re: Members' Compilation and Suggestions for POIS Summary
« Reply #92 on: July 25, 2013, 10:30:49 AM »
Hi All,

I don't see the point of this conversation ; it should be no restrictions in express our point of views ; For me in medecine, and especially with new disease, nobody should be 100% sure of anything ; I don't support desens because it does not fit to my experience but it could be helpfull as long as it done by a profesionnal...I dont think POIS is 100% somatic, but I  believe that is involved is the POIS Loop and working on it surely help to have a better life..I'm strongly against any form of sensor and i really dont' understand why you closed trader post.
If somebody can help himself with a concentration method to the point to not fell POIS symtoms, it means it works somehow..and he his not the first one. Maybe POIS in a physical disease that need to ingredient to be triggered ; stress and orgasm ;
We should stay open to any possibility until we know more about POIS ; So far we have no any kind of certitude

You say, "So far we have no any kind of certitude".

And that's exactly why I restrict adamant declarations of cures and causes of POIS. Trader was insisting that POIS is a result of stress.
I have not closed the thread permanently but I will insist in responsible communication if/when it's reopened. And I won't permit members to insist on what is and what is not POIS.

We have gone the round for the "Matrix Solution" many times in the history of POIS forums, NSF and here, and it has proven to be an impractical dead-end solution.

If some find that it helps, or makes life in general more livable, that's fine. Although I insist, there are many self help groups available on internet where such can be discussed with complete liberty.

There are two goals of the forum: to move forward with professional research, and provide responsible relief where possible to the members. If threads and posts and arguments complicate such, and members cannot respect the rules of the forum or push to dominate a theory they just won't be allowed.

The options for argument and conjecture are still wide open at other forums.

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!

Daveman

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Re: Members' Compilation and Suggestions for POIS Summary
« Reply #93 on: July 25, 2013, 02:23:48 PM »
Just coincidentally, today or yesterday maybe it was, another $100 donation came in.

Great news and great going to the donor. This donation will apply to next year's pot, but it will apply, and will make the load smaller next year.

donations from here on will very likely be leveraged, that is, with the attention and advance brought on by the first research program, we will start to see more interest from outside in supporting something "more real".

Thanks again donor.

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!

FloppyBanana

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Re: Members' Compilation and Suggestions for POIS Summary
« Reply #94 on: July 25, 2013, 02:32:35 PM »
There are two goals of the forum: to move forward with professional research, and provide responsible relief where possible to the members. If threads and posts and arguments complicate such, and members cannot respect the rules of the forum or push to dominate a theory they just won't be allowed.

The options for argument and conjecture are still wide open at other forums.
[/quote]

I think it would be a good time to share the rules of the forum. Reason I suggest this is because I have never seen these rules. I'm assuming that Daveman is not referring to some sort of generic forum rules but something more specific to POIS and the forum.

 I recently have felt that this forum wants to stop detailed conversations on Desensitisation. Perhaps that's the point where we are now but looking at the history of the desensitisation topic which has the most posts compared to other subjects. I guess for some, especially POISers that don't look like they fall into the allergy/autoimmune POIS category this must be a big distraction. We can't have "free speech", its an illusion but we can't be censored inconsiderately. The middle ground must be hard to find when the job of moderating has to be done. The moderators will make mistakes. It would be impossible not to in my view. They are human. They must feel the weight of responsibility on their shoulders. Worst case scenarios could be that someone from this forum dies by taking action from advice given on this forum.

Going back to the desensitisation topic for a moment; from what I have read about the risks of desensitisation it looks to be linked to the laws of a country. For example, in UK 29 people died from anaphylaxis over a time period I do not know. At this point the UK government changed the laws on how it should be carried out. The change meant that all desensitisation now has to be done in a clinic and the patient should stay in the clinic for a certain amount of time after the jab. Some special equipment has to be on hand to tackle anaphylaxis as well.

I think it would be responsible to rank the risk countries for desensitisation considering there are many POISers from different countries on this forum. I don't mean to scare anyone but it may be a sobering point of reference.
FB
30 years of POIS. Mytelase after O with Iceman breathing technique.

Clycos

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Re: Members' Compilation and Suggestions for POIS Summary
« Reply #95 on: July 25, 2013, 05:15:46 PM »
Hey Guys,

I realize I started this controversy and I believe maybe I should clarify my point. I must say that I actually understand Daveman's point of view, the main reason for this forum is PRIMARILY to collect information relevant to this disorder for research purposes. Although I believe the Matrix method is a theory that we should all apply in our lives (to a certain extent) in order to let go of a bit of control and live more happy and balanced lives, that Matrix discussion also has potential to trigger scepticism on POIS being a "hypochondriac" disorder and we definitely do not want to go down that road. However, the only reason I thought it was unfair that the Matrix discussion was mutted is the fact that I was happy to see a fellow POISER with so much passion and enthusiasm. I believe a lot of us feel hopeless with this disease and that discussion gave some of us optimism and hope.

Daveman

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Re: Members' Compilation and Suggestions for POIS Summary
« Reply #96 on: July 25, 2013, 06:36:34 PM »
There are two goals of the forum: to move forward with professional research, and provide responsible relief where possible to the members. If threads and posts and arguments complicate such, and members cannot respect the rules of the forum or push to dominate a theory they just won't be allowed.

The options for argument and conjecture are still wide open at other forums.


I think it would be a good time to share the rules of the forum. Reason I suggest this is because I have never seen these rules. I'm assuming that Daveman is not referring to some sort of generic forum rules but something more specific to POIS and the forum.

 I recently have felt that this forum wants to stop detailed conversations on Desensitisation. Perhaps that's the point where we are now but looking at the history of the desensitisation topic which has the most posts compared to other subjects. I guess for some, especially POISers that don't look like they fall into the allergy/autoimmune POIS category this must be a big distraction. We can't have "free speech", its an illusion but we can't be censored inconsiderately. The middle ground must be hard to find when the job of moderating has to be done. The moderators will make mistakes. It would be impossible not to in my view. They are human. They must feel the weight of responsibility on their shoulders. Worst case scenarios could be that someone from this forum dies by taking action from advice given on this forum.

Going back to the desensitisation topic for a moment; from what I have read about the risks of desensitisation it looks to be linked to the laws of a country. For example, in UK 29 people died from anaphylaxis over a time period I do not know. At this point the UK government changed the laws on how it should be carried out. The change meant that all desensitisation now has to be done in a clinic and the patient should stay in the clinic for a certain amount of time after the jab. Some special equipment has to be on hand to tackle anaphylaxis as well.

I think it would be responsible to rank the risk countries for desensitisation considering there are many POISers from different countries on this forum. I don't mean to scare anyone but it may be a sobering point of reference.
FB

I'll put some rules up for you Floppy. Actually there's a section for rules, and I'd never gotten around to putting them up there. They're so.... nebulous.

I can say 1) Be responsible or I can say 2) Don't spit. Both can be opened for discussion. NSF had more problems with its rules I think than it did before they existed.

One of their rules and one of ours is that 3) the moderator has the last word.


It's important that the rules are applied evenly and fairly, but again.... always open for discussion.

But I'll make you some rules and get them up there, they're sitting around here somewhere.

As far as desens. Europe is more progressive than the US. And the main problem isn't anaphylaxis! Sure that's a tough one, either you are OK or you die within minutes.

But far worse is the potential for creating an autoimmune condition. The allergists who won't do desens with sperm for POIS say that you CAN'T have an allergy to your own sperm.

Allergy refers to an allergen, basically these are foreign invaders.

The body has a completely different reaction to it's own genetic material. I personally give autoimmune etiology as a cause for POIS about 80% possibility. But it's a completely different reaction and can't be cured with desens.

So I don't know, maybe we are all fight over some stupid little difference.... however it's a tremendous difference.

« Last Edit: July 26, 2013, 06:53:00 AM by Daveman »
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!

FloppyBanana

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Re: Members' Compilation and Suggestions for POIS Summary
« Reply #97 on: July 26, 2013, 06:53:31 AM »
OK. I fine with that. I think prescriptive rules could cause too much debate about the rule themselves. So it your call on the detail. I think a few simple guidelines to express the spirit fo the forum should pop up now and then.
30 years of POIS. Mytelase after O with Iceman breathing technique.

Daveman

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Re: Members' Compilation and Suggestions for POIS Summary
« Reply #98 on: July 26, 2013, 07:59:14 AM »
Hey Guys,

I realize I started this controversy and I believe maybe I should clarify my point. I must say that I actually understand Daveman's point of view, the main reason for this forum is PRIMARILY to collect information relevant to this disorder for research purposes. Although I believe the Matrix method is a theory that we should all apply in our lives (to a certain extent) in order to let go of a bit of control and live more happy and balanced lives, that Matrix discussion also has potential to trigger scepticism on POIS being a "hypochondriac" disorder and we definitely do not want to go down that road. However, the only reason I thought it was unfair that the Matrix discussion was mutted is the fact that I was happy to see a fellow POISER with so much passion and enthusiasm. I believe a lot of us feel hopeless with this disease and that discussion gave some of us optimism and hope.


That's fine. Thanks for your clarification.
I agree with everything you say!

One of our biggest problems, is that nobody knows what POIS is, and we are all desperate to find a solution. We are so desperate that we are willing to take tremendous risks, and we are so "open" to see a any kind of successful coincidences as success.

I did an experiment with Viagra the other day.... the day after "zero" POIS. All I wanted to do was jump onto the forum and scream out the wonderful news.
Glad I didn't, the next day was a fairly bad day in POIS. And further experiments, that I really shouldn't be doing have had worse results. Unfortunately I need viagra, but it isn't compatible with niacin.

We have an 3 wk rule, which will come forth in the new rules, and restrict over zealous promotion of a method, especially that promises such relief. I know that Trader put all the caveats that we asked for, but persisted in his over-zealous promotion, only making a "legal note" at the end that "says this is just my experience and may not work  for everybody" (But REALY FREAKEN WORKS) between the lines.

Our members ignore doctors that say "it can't be done". We are perhaps treated with little respect, and have learned that nobody wants to go to the edge with us, so "legal notes" are ignored and seen only as a legal means  to get around saying what ever the hell you want.

I'm not here to be right, how can I be? How can any of us be. Most of these arguments that we tend to restrict are repeats from the forums since 2007. We've seen a LOT, and a lot of the same. Why repeat something that we know leads nowhere. So if we err, which is human, we prefer to err on the safe side.

Niacin almost didn't make it to the forums. the original proposition involved injecting a harder to find version of niacin. Too dangerous! But at least we found ways to take less and get better results, use a standard over the counter variety and recommend regular liver check, (twice a year).

The Matrix Method has it's potential for helping people to get through the worst. But it is difficult to manage responsibly.

I will probably reopen the thread this weekend, but it will be moderated and subject to closure again if it gets out of hand.

I don't like being anal. I didn't know what I was getting into when I started this forum, but I knew it was important, important enough to take the chance.



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!

Clycos

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Re: Members' Compilation and Suggestions for POIS Summary
« Reply #99 on: July 30, 2013, 06:21:21 PM »
Hey Guys,

Have anyone ever looked in to auto-immune encephalitis ? This is a fancy name of an auto-immune disorder that causes inflammation in the brain. Some effects of this inflammation include the following:

http://www.encephalitis.info/images/iRecovery/jigsawHead.gif

I have a feeling that Encephalitis and POIS are somehow related... I am interested to hear your thoughts


Stef

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Re: Members' Compilation and Suggestions for POIS Summary
« Reply #100 on: July 30, 2013, 08:41:07 PM »
Hey Guys,

Have anyone ever looked in to auto-immune encephalitis ? This is a fancy name of an auto-immune disorder that causes inflammation in the brain. Some effects of this inflammation include the following:

http://www.encephalitis.info/images/iRecovery/jigsawHead.gif

I have a feeling that Encephalitis and POIS are somehow related... I am interested to hear your thoughts



Hi Lycos!

Autoimmune encephalitis is a horrendous disorder that has only recently been identified.  We're very familiar with this rare and absolutely terrible disorder at NORD, and have heard from many overwhelmed families who are coping with it -- or something like it -- and trying to find answers.  People have spent years on psychiatric wards, heavily medicated, because of autoimmune encephalitis.

There's a specific auto-antibody that is implicated in autoimmune encephalitis -- "anti-NMDA-receptor"  -- which causes hallucinations and seizure-like activity.  It's not related to ejaculation in any way,  and is not found in men more than in women.  If that auto-antibody is discovered -- there is a treatment and a cure! The terrible truth is that it's often not diagnosed -- the patients (children and adults) are considered psychiatric patients -- and end up languishing on psych wards.

Here's a link to a book that was written by a young reporter for the NY Post -- Susannah Cahalan. It describes her experience with autoimmune encephalitis.  She was very fortunate to have parents who had money to call in the best neurologists available. (Ultimaterly, Dr. Souhel Najaar -- from New York University Medical Center -- saved this young woman from a truly horrible fate.) http://www.newsadvance.com/the_burg/features/books/article_dacc8b8a-f2fc-11e2-bd07-001a4bcf6878.html

I seriously doubt that any of you has this type of autoimmune encephalitis.  But -- there might be a specific "POIS antibody"  -- or perhaps even more than one POIS antibody -- that could be causing all the absolute misery of POIS.

Some very fine researchers have applied for your forum's POIS grant -- autoimmunity studies are in that mix. 

POIS is still a big mystery -- but you are all on the way to finding answers through solid research.

~Stef

Limejuice

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Re: Members' Compilation and Suggestions for POIS Summary
« Reply #101 on: July 30, 2013, 08:54:26 PM »
It might be important to note that I had encephalitis as a child (3 yrs old) but I might not represent the majority.

demografx

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Re: Members' Compilation and Suggestions for POIS Summary
« Reply #102 on: July 31, 2013, 06:55:05 AM »

Some very fine researchers have applied for your forum's POIS grant -- autoimmunity studies are in that mix. 

POIS is still a big mystery -- but you are all on the way to finding answers through solid research.

~Stef


Thrilling to hear that, Stef!!
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

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Re: Members' Compilation and Suggestions for POIS Summary
« Reply #103 on: July 31, 2013, 09:16:45 AM »
Yes, excellent news on the researcher front. Well done all involved !

joe

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Re: Members' Compilation and Suggestions for POIS Summary
« Reply #104 on: October 22, 2013, 07:51:22 PM »
USA