Members' Compilation and Suggestions for POIS Summary

[FloppyBanana]

UK

[Jimmy]

Jordan

[Clycos]

Hi guys,

Has it been discussed before of whether or not POIS may be a sexually transmitted disease? What do you guys think about this? What if POIS is such a new STD that is not yet even recognized. I guess the only way we will ever confirm this is if the number of sufferers increases from year to year exponentially.

[Colm]

Hi Lycos,

From my own experience of having POIS since teens, I know I had the symptoms from masturbation before I ever became sexually active with a woman. For me, that would personally row against this theory. It would be interesting to hear of other opinions and experience.

[Clycos]

Hi Colm,

Thanks for your reply, it was just a random interesting thought but I guess what you said definetly confirms that POIS is not an STD.

[Clycos]

Hey guys,

Really sorry, I think the last thing we need to do is block a fellow POISER from speaking their mind, I think it is totally unfair that the thread 'MATRIX METHOD-- BE GENTLE WITH YOURSELF - LET GO & ACCEPT YOUR "POIS" SELF" started by traderwithpois is blocked.
I think traderwithpois is on to something and I and other POISERS thought his posts were quite interesting to read. There is nothing controversial about the, its a personal opinion and choice of life on his end and at the end of the day no one is obliged to read them if they don't like what he posts. All I am saying is that we should support each other on this jouney, its hard enough as it is.

Thank you,

[Colm]

Hi Lycos,

A welcome comment here about Traderpois and the thread 'MATRIX METHOD-- BE GENTLE WITH YOURSELF - LET GO & ACCEPT YOUR "POIS" SELF".

I also found trader's points of view were well expressed and well thought out, and were from his own experience, which I think were authentic in the way he wrote on the post.

However, I'd like to give an opinion here, having lived with the condition a long time, and used methods like he describes for I don't know how long - 2/3 DECADES !.

I am not going to go into a lot of analytics on the detail of his thinking and others replies here.

My belief is that his thinking MAY be relevant to help with symptom reduction, using a mental/psyche/EQ, power of letting go/power of belief and mind/body/spirit approaches.

With balance, I think that people will be genuinely self-helping their symptom reduction at some level, IF they can find methods that take their mind off their own symptoms, which I know is a good thing. I.E. "What we focus on grows". But it depends on one's level of self awareness, and psychological well being, to be able to do this in a meaningful way.

I also believe that early into the POIS condition, such as with your good self Lycos, this may be a highly valid method of dealing with, and who knows, maybe even reversing the impacts of symptoms.

I am strongly of the conviction that to allow him continue to have this platform, when he had clearly made his points - which to me were NOT new - but were leaning toward the dogmatic evangelic side of things, would have been an error of judgement. I know his intentions were good and all well meant and his opinions have not been deleted, just parked. Boards need good moderation.

My real point here, is that I believe it would be grossly wrong, without any hard evidence, for any member here (trader or others) to continue trying to convince people of their approach's validity with genuine POIS sufferers and this could actually be more damaging than helpful to many. I have not seen any other group of postings by another individual on the forum that were trying to sell their approach as hard as Trader.

I also think it would have been irresponsible to damage the credibility, inputs and good actions (such as the NORD fund raising etc) that seems to be evolving from this community, by drawing so much attention to something that NordNurse has stated, seems not on the agenda for potential researchers. Perhaps if the research shows it should be evaluated, it may open up this dialogue again and should do, if no physiological background to POIS is evolving. I am hopeful of the research helping me, and would not wanting one individual's strong opinions to impact this in any way.

While trader meant well and was highly articulate from what I read of his posts, I think they should be parked for now. Otherwise the moderators may allow "EGO IS" syndrome to run wild on the board. I don't think this was a denial of free speech, just a sound board management choice at a critical time in the research.

Colm

[poisioq]

I don't think what is going on here is a good moderation.
The moderator has recently admitted that THIS SITE DOES NOT SUPPORT DESENS in another thread. So he is going to stop that thread as well.
At the same time he is supporting the use of niacin. Which I think could be a good thing, I also used it and has helped me a lot. But nobody knows really what are the effects of the flush on the long run.
Me for example, since I started using it, I got many eczema on different parts of my body.

[Daveman]

I don't think what is going on here is a good moderation.
The moderator has recently admitted that THIS SITE DOES NOT SUPPORT DESENS in another thread. So he is going to stop that thread as well.
At the same time he is supporting the use of niacin. Which I think could be a good thing, I also used it and has helped me a lot. But nobody knows really what are the effects of the flush on the long run.
Me for example, since I started using it, I got many eczema on different parts of my body.

Poisioq:

I am just a regular guy, who works full time and who has very little time of his own.

I don't have problems re-opening the thread about the Matrix Method, but it was getting to dominate the board  and require excessive effort to keep it reasonable.

I just don't have the time and energy to deal with it. Nor do I care so little about you all to just let it go where it wants to lead you down a path that we have already shown to be non-effective (See NSF, it's loaded with these failed attempts). If you want that, perhaps NSF would be excellent for you.

No one else has had the time or energy, or concern enough for you all,  to go to the effort of creating a forum with over 800 members, without compensation or need for praise.

More and more as time passes our direction will be guided by the research. This is a site that (thanks the the support of some very brave members) has lead the way for true professional research on POIS. This has NEVER BEEN DONE before.

If it were completely my choice, I wold close down all the threads and deal only with the upcoming research. Anything else is conjecture, even niacin.

It helps some, but is not the cure, Matrix Method helps some, but is not the cure, Fenugreek helps some... etc. etc. Talking about theories is just chasing the tail at this point.

Things that can perhaps reduce symptoms are useful, sharing stories, supporting those who are down, all useful.

In that sense the Matrix Method has it's potential, but it wasn't being managed responsibly.

So in that respect, if you don't like the moderation go somewhere else. I'm busy!

[poisioq]

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 responsability 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.
 

[LAPOISSE]

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]

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.

[Daveman]

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.

[Daveman]

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.

[FloppyBanana]

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

[Clycos]

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]

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.

[FloppyBanana]

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.

[Daveman]

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.

[Clycos]

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