POIS and SLAVR Syndrome

[tirasoft]

All of you who have POIS read this : http://slavrsyndrome.com/conditions/pois-post-orgasmic-illness-syndrome/
 
It explains for e.g. why niacin and fenugreek and garlic is good for POIS and also give an explanation for POIS symphtoms . And more .

I just found this site minutes ago and it seems at least interesting !

[Daveman]

All of you who have POIS read this : http://slavrsyndrome.com/conditions/pois-post-orgasmic-illness-syndrome/
 
It explains for e.g. why niacin and fenugreek and garlic is good for POIS and also give an explanation for POIS symphtoms . And more .

I just found this site minutes ago and it seems at least interesting !

It's one of the many explanations for the symptoms.

Be careful with this site, it's proposals, although well presented are exaggerated and misleading.

Tirasoft, we have raised over $33,000 which will be administered by the National Organization for Rare Disorders, to conduct Professional Research. This is a very important step.

1) Most importantly it will establish professional documentation that will be recognized by the world network of medical practitioners. This means that eventually you will be able to go to a doctor, anywhere in the world and say that you have POIS or whatever it may end  up being called,  and they will say, "Ahh yes, I know about that, here's what you do..." You won't be tied to a single "specialized and isolated group" like SLAVRS for example to fiind your remedy.
2) The slvars site, despite all they promote as knowing the cause, requires that you invest a good sum in finding out what your temporary solution is. In effect, they require more investment on your part to contribute to an ongoing research, directed by non-medical personnel who's goal is to promote a supposed cause which in fact is only a symptom of POIS.
3) SLVARS is only a symptom of a root cause, which they claim does not exist. Our researchers propose this is not true. You can attack symptoms forever, and maybe alleviate them, but you are fighting a higher cause. This is a greater drain on your system in the longer term.
4) Their foundation (hypothesis) although supported by limited and uncontrolled research, is based on only that, a hypothesis. It sounds good, and even may be close to the root of the cause of the misery for many, but not all, nor for the whole world. If you are lucky enough, for lack of a better word, to find help in slvars, what about the poor guy in some corner of the world who doesn't have internet, or resources?
5) You are tied to their solution and their "councelling". Sure it's all done through doctors, but you NEED their advice. So far there is no charge for this.
6) Our research grant is professionally administered by some of the top rare disorder researchers in the world. They KNOW rare disorders. They know how to approach very strange health anomalies, in order to get to the root of a problem. They have some incredible success stories behind them, each and every one individually, and as a group through NORDs. The research program MUST be controlled, that is, must show that causes and solutions must be specific to POIS, and not just coincidentally assertive. And the program is strictly monitored to assure that it follows the original proposal.

The foundation of the NORD process is that it opens the door of the medical community to your cause. This is what we most lack! It's a problem we ALL have.

Don't take second best. There are many that know we are "desperate and will do anything to feel better". We will risk death at times to find our peace... but be patient, the peace, real peace is just around the corner.

I'm not erasing the link, because you will all find the site sooner or later. But go with eyes open and remember here is where the ONLY professional research for POIS in the world is being undertaken.

[b_jim]

Not easy to give you a satisfactory answer Tirasoft. 
On the one hand, we need to keep a scientific basis. As Daveman said we have contact with Nord and we have a good chance to find a solution well admitted by scientific communauty.

On the other hand, we should remember the recent past where Pois was a "imaginary disease".



All this to say i'm no closed to alternative or exotic theorie. As I prove last time on the naked scientist forum by posting an official link about adrenal fatigue. Maybe Slavr syndrome will find its legitimity in the future.

Anyway as I said, 2 points are attractive. The first is to find the link between all the elements tested by
Pois sufferers like niacin, nutmeg, olive leaf, fenugreek ...etc. It's an intelligent approach. The second is a personal feeling I have just after orgasm. I feel cold just after and vasoconstriction might be an explanation. 

[tirasoft]

Ok Dave. In understand the importance of a sustained research , with transparency, budgets , top researchers envolved , etc.

But, even if , as you said , they describe issues based on hypothesis, this itself I do not think is a wrong or blamable thing to do , cause this is the first step in any research : to start with hypothesis and verify them .

As you said, the "these pages is a result of a privately conducted and funded research by those who were affected by these conditions" ,  is a little questionable , I mean they want to remain anonimus. I do not seethe reason of this lack of transparency.

Anyway, I thing even if we take this as ipothesis , I do not think we can afford ourselves to ignor any ideas regarding the subject. More than that, I would like to hear the response of the "top rare disorder researchers in the world" wich you said are envolved in some organized research (NORD).

Anyway Dave, you might be right , that SLAVRS may be only a symtom not the cause .

Best wishes and hope hearing soon good news about effective cure of POIS.

Signed : a poiscenter.com follower  . (Please excuse bad English if possible , I am not an native English speaker)

PS : I saw the topic is already discussed in August: http://poiscenter.com/forums/index.php?topic=1042.30

[tirasoft]

Now that I started this topic (I recognize without an extensive research on internet of related issues) , I found on the other POIS forum (I realized only today there are 2 separate forums on POIS and the owners of those forums are not quite the best friends ) , more information about this "SLAVR" topic and the site . And opinions coming from the owner of the site , a guy named "Marc" .

Unfortunatelly, I found a not amusing quarrel between this Marc and another guy GBolduev who pretend to be a biochemistry specialist living in Russia , the base is that GBolduev points Marc as a plagiator , and SLAVR would be VVD (vegetative-vascular-dystonia , http://knowledge-storage.com/medicine/37-medicine/111-vegetative-vascular-dystonia) .

On the other hand , this GBolduev pretend to explain and cure POIS by mineral unbalancies coper/zinc and so .

Here is the mentioned debate : http://www.thenakedscientists.com/forum/index.php?topic=6576.19350


Now we, the POIS victims will probably be as confused as we were till now ...........


I more and more think that the best approach is that Dave tells us : a scientifical research made by professionals (see NORD : in November appear to start a research program financed by 33k USD donations )

[Daveman]

Now that I started this topic (I recognize without an extensive research on internet of related issues) , I found on the other POIS forum (I realized only today there are 2 separate forums on POIS and the owners of those forums are not quite the best friends ) , more information about this "SLAVR" topic and the site . And opinions coming from the owner of the site , a guy named "Marc" .

Unfortunatelly, I found a not amusing quarrel between this Marc and another guy GBolduev who pretend to be a biochemistry specialist living in Russia , the base is that GBolduev points Marc as a plagiator , and SLAVR would be VVD (vegetative-vascular-dystonia , http://knowledge-storage.com/medicine/37-medicine/111-vegetative-vascular-dystonia) .

On the other hand , this GBolduev pretend to explain and cure POIS by mineral unbalancies coper/zinc and so .

Here is the mentioned debate : http://www.thenakedscientists.com/forum/index.php?topic=6576.19350


Now we, the POIS victims will probably be as confused as we were till now ...........


I more and more think that the best approach is that Dave tells us : a scientifical research made by professionals (see NORD : in November appear to start a research program financed by 33k USD donations )

Yes we are all too aware of that squabble!

The other administrator of this forum (Demografx)  was among the first three (I think it was) members of that "other forum". He was a long time moderator of that forum, and I'm sure it wouldn't have survived without his effort.

They wouldn't let us promote our development program to finish raising the funds, and given the continual Merry-go-round and squabbles (such as the one you site), we began this site, with the prime focus of raising the grant funds. Our members have done an amazing job of putting the money together.

There is such disparity over the potential causes of POIS, and everyone has their opinions as to what they are, us included. But the last thing we wanted was to have our or other no-expert opinion lead POIS research down a dead end street. So along comes NORD with a very solid program and excellent history of rare disease research management.

It's a rocky road, especially when people think we don't like their approach to POIS. But in fact we will accept ANYTHING that NORD finally accepts. We KNOW they have the best judgement possible, and attract the best researchers for rare disorders like ours.

WE CAN'T LET OURSELVES IMAGINE THAT WE KNOW THE BEST ROUTE TO SOLVE THE POIS PROBLEM.

Even an isolated expert may err. But when you have a competition among the best, and one is chosen by a very experienced board, that's got to be better than any conjecture by inexperienced non-medical individuals in the area, even if they ARE POIS sufferers.

Being a POIS sufferer making a hypothesis is WORSE than a non-sufferer because he is biased by many factors, the least of which is "his gut feel" of what is happening. The fact that he is suffering does NOT make him more experienced medically.

[Daveman]

Not easy to give you a satisfactory answer Tirasoft. 
On the one hand, we need to keep a scientific basis. As Daveman said we have contact with Nord and we have a good chance to find a solution well admitted by scientific communauty.

On the other hand, we should remember the recent past where Pois was a "imaginary disease".



All this to say i'm no closed to alternative or exotic theorie. As I prove last time on the naked scientist forum by posting an official link about adrenal fatigue. Maybe Slavr syndrome will find its legitimity in the future.

Anyway as I said, 2 points are attractive. The first is to find the link between all the elements tested by
Pois sufferers like niacin, nutmeg, olive leaf, fenugreek ...etc. It's an intelligent approach. The second is a personal feeling I have just after orgasm. I feel cold just after and vasoconstriction might be an explanation. 

B_Jim,

Vasoconstriction probably is an explanation, for some. But what causes the vasoconstriction? Vasoconstriction is a symptom, just like brain-fog.

The last S in SVLARS is for Syndrome. And if you look up the definition of syndrome, you'll see that it is basically a grouping of symptoms. SLVARS, by definition is a symptomatic phenomenon.

Knowing what helps certain symptoms is definitely a clue to what might be going on, but it is just one. As we know, niacin doesn't work for everyone, that also has to be taken into consideration. Does that mean that not all POIS sufferers suffer from vasoconstriction, or that niacin does not resolve the vasoconstriction problem for some POIS  sufferers?

That's why each and every one over there is going to have to do costly tests, because they don't have the full answer.

I don't deny that it could certainly be beneficial in the short term for some of us to find relief. But you've seen it yourself B_Jim, some sufferers find THEIR answer, and we never see them again. Are they going to be back in three years because they have liver damage and can't continue their treatment?

What might have  happened if research for Diabetes was left in the hands of the inexperienced sufferers for example? Somewhere along the line, they realize that carbohydrates cause problems, so they devise  diets, which don't work for everyone, so they look for a cause and find that WOW, insulin helps them to assimilate sugar. But Ooops, this doesn't work for everybody either, so they give up in that route and start looking elsewhere, going round and round in circle as we have for over 6 years, because WE ARE NOT EXPERIENCED RESEARCHERS, and our testing is  FAR from complete. Some may even organize as the SLVARS guys have done, and even use professional testing, but those who are guiding the research (excuse me please) DON´T KNOW WHAT THEY ARE DOING!!.

Compare the best of them (who are they, they won't say, which I find creepy) to the experience of both the NORD advisory committee and to the individual researchers. No competition.

I just don't understand B_Jim for someone that's been in this viscous circle for soooo long, how you can accept anything less than the best.

[demografx]

For those of us like b_jim (and me) who have been posting on POIS forums since 2007, we know the answers lie with professional research like NORD's program. But I see firsthand how hard it has been to let go of private rumination (our "feelings" about POIS' cause & treatment) after mulling over 20,000 posts - with zillions of hypotheses and data whizzing by, most rejected personally but some remain tantalizing -- with question marks) and so temptation knocks, knowing we still have a long wait till a solid treatment is formulated through the NORD process.

But I strongly question and doubt anyone's "packaged treatment concept" at this stage. It takes hard professional work and...research money!

I don't see that anyone outside of NORD has even begun to put something together that explains POIS medically, with established scientific research procedures.

[nomore2013]

so, is anybody going to research the stages and learn them, and then try to play around with vasodilation/vasoconstriction agents to see how much they can reduce POIS symptoms?

or, are you just going to wait around for NORD to do a study?

[Daveman]

so, is anybody going to research the stages and learn them, and then try to play around with vasodilation/vasoconstriction agents to see how much they can reduce POIS symptoms?

or, are you just going to wait around for NORD to do a study?

I have my solution. If I didn't I'd be looking as frantically as ever for something to help in the meantime. I don't think anybody is going to JUST WAIT AROUND.

The most important point I want to make, is that it seems as though these guys actually believe that vasoconstriction is the only factor, and are leading people to believe that POIS is resolved.

Already we have several members who have doubts. We want to believe! We are vulnerable!

Impatience has a price, sometimes very high. People have had parts removed in the attempt to cure POIS. Some without success, and in any case, once the actual cause is determined, perhaps such drastic methods might not have been required.

nomore2013, I insist, a temporary solution that doesn't do damage is one thing, but only real professional research will find the definitive answer, and an answer the medical community will accept.

OUR BIGGEST PROBLEM IS THE LACK OF KNOWLEDGE AND UNDERSTANDING, THEREFORE SUPPORT, ON THE PART OF THE MEDICAL COMMUNITY.
Only research can resolve that problem.

[tirasoft]

Hi.
Demo, I found already that you were the moderator for the other site , and you did a very good job.

Dave , I am 100% agree with all you said.

On the other hand, I think all we got as individuals fite against Pois is our experiences, our knowledge from web search and scientific issues we find, and our ... logic and common sense.

For example I did read yesterday a few hours about related issues regarding symptoms and so, and I felt that there are a lot of associations there can be made.

I hope also the scientists who will work on it will take into consideration the abundance of personal experiences which can be found on the pois forums.

Hope hear soon about Nord research, Regards

[Daveman]

Hi.
Demo, I found already that you were the moderator for the other site , and you did a very good job.

Dave , I am 100% agree with all you said.

On the other hand, I think all we got as individuals fite against Pois is our experiences, our knowledge from web search and scientific issues we find, and our ... logic and common sense.

For example I did read yesterday a few hours about related issues regarding symptoms and so, and I felt that there are a lot of associations there can be made.

I hope also the scientists who will work on it will take into consideration the abundance of personal experiences which can be found on the pois forums.

Hope hear soon about Nord research, Regards

Yes, tirasoft, that's all we have had for more than 6 years. And yes we have found some relief here and there for some of us, but there are a whole world of POIS sufferers out there that need readily available professional help.

6 years, trying everything under the sun, including the sun.....

We need real advance. For once and for all!

[Clycos]

Hey Daveman,

Is November still the month that the researcher will be picked? What is the update on that for the moment, have they found any potential prospects? I seriously can't wait to hear some news from NORD; I am fed up completely of this illness it has taken the best out of me...

[Daveman]

Hey Daveman,

Is November still the month that the researcher will be picked? What is the update on that for the moment, have they found any potential prospects? I seriously can't wait to hear some news from NORD; I am fed up completely of this illness it has taken the best out of me...

Hi Lycos,

Yes, November (although it may be late November) the final researcher will be chosen. All that I can say (all that I know) is that there are three very good candidates. All well know researchers on a world wide basis and experienced in POIS.

It's worse than waiting for Christmas!!    And once chosen, it will still take a while to find the answers, but at least we'll know that the best option was chosen and we should know what approach will be undertaken. I am informed that any one of the researchers should please us, and that is not an easy undertaking.

It's a lot easier to say "have patience", than it is to do.... but some of us have waited many many years, and lost a lot of life. So a little more will be worth regaining whats left. That little that's left will be appreciated much more, after such a long and arduous wait.

[Ccconfucius]

daveman is  the researcher  chosen going to test one hypothesis or multiple until there is worthwhile result.

[Vincent M]

This SLAVR site looks interesting. Of course the idea of vasoconstriction/vasodilation having an effect on POIS symptoms has been discussed before, but it's interesting to me that someone who seems to me to be a POIS sufferer has taken that idea to this level.

They claim to have done private research trials, but they don't allow public viewing of even the abstracts of these supposed studies, which comes off as quite dodgy in my eyes:

"The mechanism of symptomatic causes of chronic fatigue, fibromyalgia, myofascial pain, post orgasmic illness and associated syndromes documented on these pages is a result of
a privately conducted and funded research by those who were affected by these conditions. Due to privacy considerations, these individuals have agreed to keep their names undisclosed,
while bringing their findings in hopes to improve the quality of those who suffer. The information presented throughout this site pertaining the mechanisms of the diseases and their causes is privately held and available for educational use only. It is not intended to diagnose or treat any medical conditions. You must accept the terms of use before proceeding any further.
Any information borrowed from this site must be properly accredited to SLAVRSyndrome.com as referred to Self Limited Atypical Vascular Response Syndrome (SLAVRS)."

[Daveman]

Yeah, "We don't want to disclose our names because.....ahh,  we don't want to!"

And we've just cleaned up all the stuff that  you guys have already figured out, so if you want to use it, you have to call it SLAVRS. (Did they mean SLAVRS or Ours?)

The guys that throw molitov coctails here don't want people to know who they are either! Or bank robbers.. Just sayin'