Author Topic: Free Flow Discussion about POIS  (Read 578436 times)

Nas

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Re: This may seem like a familiar place.
« Reply #2175 on: January 24, 2019, 04:16:52 PM »
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.
« Last Edit: January 24, 2019, 04:23:41 PM by Nas »

Muon

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Re: This may seem like a familiar place.
« Reply #2176 on: January 24, 2019, 04:21:14 PM »
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

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Re: This may seem like a familiar place.
« Reply #2177 on: January 24, 2019, 04:37:17 PM »
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!
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

demografx

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Re: This may seem like a familiar place.
« Reply #2178 on: January 24, 2019, 04:41:08 PM »
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 :(


« Last Edit: January 24, 2019, 04:45:12 PM by demografx »
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

Muon

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Re: This may seem like a familiar place.
« Reply #2179 on: January 24, 2019, 05:05:13 PM »
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

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Re: This may seem like a familiar place.
« Reply #2180 on: January 24, 2019, 05:06:51 PM »
We are lucky if this research uncovers a tiny part of the mechanism of POIS
Thank you for expressing some realistic expectations!
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

demografx

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Re: This may seem like a familiar place.
« Reply #2181 on: January 24, 2019, 05:19:00 PM »
Harmed by research oh jezus. No unstable people for our next research project please.
“No unstable people”?? We’re POISers !!!!!



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

demografx

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Re: This may seem like a familiar place.
« Reply #2182 on: January 24, 2019, 05:24:11 PM »
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 ;D
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

Nas

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Re: This may seem like a familiar place.
« Reply #2183 on: January 24, 2019, 07:44:24 PM »
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  ;D
« Last Edit: January 24, 2019, 07:46:48 PM by Nas »

Nas

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Re: This may seem like a familiar place.
« Reply #2184 on: January 24, 2019, 07:46:17 PM »
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

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Re: This may seem like a familiar place.
« Reply #2185 on: January 24, 2019, 11:54:39 PM »
Thanks, Nas.
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

demografx

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Re: This may seem like a familiar place.
« Reply #2186 on: January 24, 2019, 11:58:36 PM »
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  ;D
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

demografx

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Re: This may seem like a familiar place.
« Reply #2187 on: January 25, 2019, 06:33:39 PM »
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!


« Last Edit: January 25, 2019, 06:37:34 PM by demografx »
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

Nas

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Re: This may seem like a familiar place.
« Reply #2188 on: January 25, 2019, 07:18:34 PM »
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

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Re: This may seem like a familiar place.
« Reply #2189 on: January 25, 2019, 11:33:51 PM »
Thanks, Nas!
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