Free Flow Discussion about 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.

[demografx]

We are lucky if this research uncovers a tiny part of the mechanism of POIS

Thank you for expressing some realistic expectations!

[demografx]

Harmed by research oh jezus. No unstable people for our next research project please.

“No unstable people”?? We’re POISers !!!!!

[demografx]

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.

Someone else would have to manage this. I’m exhausted

[Nas]

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.

Thanks, I guess I'm not suing then 

[Nas]

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

Wow, what an asshole :/ He should've known that research can sometimes be dangerous and that he should be full aware of its implications. Sigh.

[demografx]

Thanks, Nas.

[demografx]

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.

Thanks, I guess I'm not suing then 

[demografx]

NORD just informed me that the POIS search results on NORD's website now include data from NIH's (National Institutes of Health) GARD (Genetic and Rare Diseases Information Center).


https://rarediseases.org/?s=pois&submit=


https://rarediseases.org/gard-rare-disease/10809/postorgasmic-illness-syndrome/


Thanks to POISCenter members, including Stef, who helped put this together starting a few years ago!

[Nas]

I just like to mention that I have been recently in contact with a biochemist in Belgium who says he has POIS. I talked to him for a while and he said that he would do a cultured test for the blood and semen, and observe the interaction. He did it, and what he told me that there were no IgG activity observed. I asked him whether he actually had POIS, he generally seems to have it all though he does not have PE. He said that he'll do further tests until he abandones the auto-immune hypothesis. This is his FB profile if any is interested to talk to him: https://www.facebook.com/pdepauw

[demografx]

Thanks, Nas!