Free Flow Discussion about POIS

[Nas]

Nah I don't sneeze, I mean, I never really notice it, maybe I'll pay more attention in the future. But overall the majority of what I suffer from is Neuropsychiatric.

Do you think the vagus nerve could be involved in your POIS?

I think what I have is inflammation in the CNS. I honestly don't fully understand how the vagus nerve can be at all related to POIS. What I think POIS is related to immune activity and potentially hormonal issue, but I'm not really sure about the latter.

[demografx]

Very interesting, Nas!

You just made me re-think the “perfect wisdom” of the theory of Dr Komisaruk. I say “perfect wisdom” only because he seems at the forefront and has spent his career studying the science of orgasm. However, most of his published studies are in analyzing female orgasm. Maybe we’re completely different!

[Muon]

However, most of his published studies are in analyzing female orgasm.

I also find it more interesting to analyze female orgasms though

[demografx]

However, most of his published studies are in analyzing female orgasm.

I also find it more interesting to analyze female orgasms though

[demografx]

I *almost always* sneeze at POIS onset.

I also sneeze often with my first cup of coffee in the morning.

[demografx]

Nah I don't sneeze, I mean, I never really notice it, maybe I'll pay more attention in the future. But overall the majority of what I suffer from is Neuropsychiatric.

Do you think the vagus nerve could be involved in your POIS?

I think what I have is inflammation in the CNS. I honestly don't fully understand how the vagus nerve can be at all related to POIS. What I think POIS is related to immune activity and potentially hormonal issue, but I'm not really sure about the latter.

I wonder if my POIS is hormonal.

[Nas]

Nah I don't sneeze, I mean, I never really notice it, maybe I'll pay more attention in the future. But overall the majority of what I suffer from is Neuropsychiatric.

Do you think the vagus nerve could be involved in your POIS?

I think what I have is inflammation in the CNS. I honestly don't fully understand how the vagus nerve can be at all related to POIS. What I think POIS is related to immune activity and potentially hormonal issue, but I'm not really sure about the latter.

I wonder if my POIS is hormonal.

Potentially, according to Muon's Treg theory, some hormonal issues can lead to down regulations of Treg cells that contribute to non-self discrimination. The auto-immune reaction, it self, leads to systematic symptoms, how exactly I do not know and I think this matter needs some sort of investigation.

[demografx]

Nah I don't sneeze, I mean, I never really notice it, maybe I'll pay more attention in the future. But overall the majority of what I suffer from is Neuropsychiatric.

Do you think the vagus nerve could be involved in your POIS?

I think what I have is inflammation in the CNS. I honestly don't fully understand how the vagus nerve can be at all related to POIS. What I think POIS is related to immune activity and potentially hormonal issue, but I'm not really sure about the latter.

I wonder if my POIS is hormonal.

Potentially, according to Muon's Treg theory, some hormonal issues can lead to down regulations of Treg cells that contribute to non-self discrimination. The auto-immune reaction, it self, leads to systematic symptoms, how exactly I do not know and I think this matter needs some sort of investigation.

Too bad we have limited influence on NORD researchers’ course of investigation.

[demografx]

Wishing to all of us:

POIS progress in 2019!!

I inquired again re NORD status. Just heard back from them: it still “...looks good!” for January announcement of our new
POIS Research Team.

For newcomers:
https://tinyurl.com/y8ow7v8j

[Muon]

Let's hope the researcher(s) will come up with something interesting. I will go complete bananas when they solely be doing IgE measurements. With other words I hope they do not kick in open doors.

[Nas]

Let's hope the researcher(s) will come up with something interesting. I will go complete bananas when they solely be doing IgE measurements. With other words I hope they do not kick in open doors.

Exactly, I think this forum should have some contact with the team so we can at least suggest that they build up on Waldinger's findings, instead of starting from scartch or trying a random theory that is potentially unrelated to POIS. WE ARE IN A DIRE SITUATION, we don't have the luxury of time, so we hope the research would be relevant and constructive. I also whish the workers open mindedness. I don't want the research to be cancelled because " ewww, these men are masturbating, so gross...".

[demografx]

Gentlemen, please slow down, you weren’t there when we made the difficult decision of hiring NORD and I don’t believe you donated and saw the agony of our ups and downs throughout this most difficult process.Those were excruciating times, but as a rare disorder we are still way ahead of 90% of most other rare disorders in bootstrap funding of medical research. We have little to no control over the researchers’ methodology. That’s our “contract”. But we do have the experience of a distinguished group to guide us:
https://poiscenter.com/forums/index.php?topic=2462.msg21005#msg21005

I really appreciate your great contributions to this forum. Let’s continue to work together to accomplish “the impossible” on a limited budget. CFS Research, as just one example, has cost million$ in research, with very little progress to show.

[Hopeoneday]

I think that ewry new poiser apriciate what people did in past here,
I do not think this is questionable at all.
I also think that ewry new poiser will donate from his pocket if
needed in future.
Several problem there, but one of them is small amount of us.

Further... what i been thinking lately, that we organise "private"
reasarching.
Find some experts team who able to test "ewrything",
who do test for mony, and do all
posible testes, from genetics to...
For exemple,  "Mayo clinic"  chose 5-6 poisers difernet tipes,
who be able to be there.

I dont know is this stupid idea, but i would put
donation wright now for that.

 

[Nas]

Gentlemen, please slow down, you weren’t there when we made the difficult decision of hiring NORD and I don’t believe you donated and saw the agony of our ups and downs throughout this most difficult process.Those were excruciating times, but as a rare disorder we are still way ahead of 90% of most other rare disorders in bootstrap funding of medical research. We have little to no control over the researchers’ methodology. That’s our “contract”. But we do have the experience of a distinguished group to guide us:
https://poiscenter.com/forums/index.php?topic=2462.msg21005#msg21005

I really appreciate your great contributions to this forum. Let’s continue to work together to accomplish “the impossible” on a limited budget. CFS Research, as just one example, has cost million$ in research, with very little progress to show.

I agree Demo, we are just very enthusiastic about the research and its potential because it affects us personally. We only wish the researchers to do their best. But we are also very fraustrated with some stuff we sometimes observe in the medical field, especially when our illness is not taken seriously and just get laughed at, this is something we are very keen on avoiding. Thanks again Demo for building up, managing and keeping up with this forum and research. I'm sorry if we sound too demanding.

[Muon]

Let's hope the researcher(s) will come up with something interesting. I will go complete bananas when they solely be doing IgE measurements. With other words I hope they do not kick in open doors.

Exactly, I think this forum should have some contact with the team so we can at least suggest that they build up on Waldinger's findings, instead of starting from scartch or trying a random theory that is potentially unrelated to POIS. WE ARE IN A DIRE SITUATION, we don't have the luxury of time, so we hope the research would be relevant and constructive. I also whish the workers open mindedness. I don't want the research to be cancelled because " ewww, these men are masturbating, so gross...".

Don't get me wrong though, I don't think we should give researchers advice directly and don't think we are in a position to do so anyway because of our lack of medical training and biased opinions. But like demo has said already we have no influence on the methodology. I'm sure they will read all available papers about POIS.

CFS Research, as just one example, has cost million$ in research, with very little progress to show.

Indeed, I think people should lower their expectations. I have seen people talking about a cure after research has been done but we don't know anything yet about POIS. With the amount of funding and frequency of research a cure could be decades away. We are lucky if this research uncovers a tiny part of the mechanism of POIS

[Nas]

See I'm not trying to tell people what to do. I don't think I'm in that position. But seeing how the last research went off the rails from Waldinger's research. I feel perhaps a bit of reminder won't hurt no body. I feel that medical professionals get too aggravated by suggestions from non-professionals, which I totally understand, but that shouldn't lead to complete dismissal of what the layman says. I feel if an idea needs to be dismissed, it should be dismissed for its stupidity and not because it was mentioned by a layman. Again I'm not trying to act as what I says is equal, but I feel that objectivity is more important than someone's medical degree.

[Muon]

But seeing how the last research went off the rails from Waldinger's research.

That was not Waldinger's research, it was poiscenter funded research. Why was it cancelled again?

[demografx]

I think that ewry new poiser apriciate what people did in past here,
I do not think this is questionable at all.
I also think that ewry new poiser will donate from his pocket if
needed in future.
Several problem there, but one of them is small amount of us.

Further... what i been thinking lately, that we organise "private"
reasarching.
Find some experts team who able to test "ewrything",
who do test for mony, and do all
posible testes, from genetics to...
For exemple,  "Mayo clinic"  chose 5-6 poisers difernet tipes,
who be able to be there.

I dont know is this stupid idea, but i would put
donation wright now for that.

 

Excellent idea! Nothing prevents us from doing concurrent research!

[demografx]

But seeing how the last research went off the rails from Waldinger's research.

That was not Waldinger's research, it was poiscenter funded research. Why was it cancelled again?

A POISer volunteer for fMRI post-POIS onset from this forum complained that he was harmed by the research. An 18-month in-depth medical/legal investigation (withheld from us!) revealed there was absolutely no basis for the claim. Rutgers was so rattled though, they quit the research and (thankfully!!) fully refunded our fees to NORD. This is all explained here in depth, you can look up the thread.

Depressing period

[Muon]

I want to make a correction about the comment Nas made which I did interpret incorrectly. He said that it completely went off the rails from where Waldinger was researching about. He didn't say it was Waldinger's research.

But seeing how the last research went off the rails from Waldinger's research.

That was not Waldinger's research, it was poiscenter funded research. Why was it cancelled again?

A POISer volunteer for fMRI post-POIS onset from this forum complained that he was harmed by the research. An 18-month in-depth medical/legal investigation (withheld from us!) revealed there was absolutely no basis for the claim. Rutgers was so rattled though, they quit the research and (thankfully!!) fully refunded our fees to NORD. This is all explained here in depth, you can look up the thread.

Depressing period

Yea I remembered the forum drama it created but forgot about the details, thanks. Harmed by research oh jezus. No instable people for our next research project please.

I think that ewry new poiser apriciate what people did in past here,
I do not think this is questionable at all.
I also think that ewry new poiser will donate from his pocket if
needed in future.
Several problem there, but one of them is small amount of us.

Further... what i been thinking lately, that we organise "private"
reasarching.
Find some experts team who able to test "ewrything",
who do test for mony, and do all
posible testes, from genetics to...
For exemple,  "Mayo clinic"  chose 5-6 poisers difernet tipes,
who be able to be there.

I dont know is this stupid idea, but i would put
donation wright now for that.

Excellent idea! Nothing prevents us from doing concurrent research!

There is a lab for clinical studies/group analysis in Berlin where you can perform such things:
https://www.synevo-ssl.de/en/about-us.html
All you need is money and patients.