Author Topic: POIS 2021-2022 NORD RESEARCH STUDY  (Read 35385 times)

Nas

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #60 on: July 19, 2019, 01:29:44 PM »
Thanks Demo,
I fully understand where they're going with this now, I thought the theory relied on it fundamentally to explain POIS. But now I think if it showed irregularity then perhaps it might help in diagnosing the reason.

demografx

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #61 on: July 19, 2019, 03:49:29 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: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #62 on: July 19, 2019, 09:40:28 PM »
This is not a question for the researchers but just an observation:

All 3 patients (myself, my brother and Simon66) on this forum tested negative for IL-6. Other inflammatory cytokines  like IL-1b and TNF-alpha also showed normal results.
Thanks, Muon. Interesting! If you still want to pass along to NORD researchers, please remind me when the POIS Study gets rolling.
« Last Edit: July 21, 2019, 04:41:50 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

demografx

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #63 on: July 21, 2019, 04:33:44 PM »
Google POIS Alert
Postorgasmic Illness Syndrome
As-it-happens update   July 21, 2019
NEWS   

NORD Awards Ten New Grants in Eight Disease States for Rare Disease ... endocrine, and immune mediators of post-orgasmic illness syndrome

https://www.newkerala.com/news/read/178508/nord-awards-ten-new-grants-in-eight-disease-states-for-rare-disease-research.html
 
« Last Edit: July 21, 2019, 04:40:08 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

BoneBroth

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #64 on: July 23, 2019, 11:58:21 AM »
Where are the results of all the main POIS Surveys taken place here. Are they possible to download for me somewhare?

demografx

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #65 on: July 23, 2019, 01:17:35 PM »
This thread is about the upcoming NORD study only.
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: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #66 on: July 25, 2019, 09:42:11 PM »
Where are the results of all the main POIS Surveys taken place here. Are they possible to download for me somewhare?

Links from our Welcome Page. And more (from 2016). Please ask around for more up to date info.  Can anyone else help post any new links here? Also, the
2018 POIS SURVEY by La_pet1te_Mort (LPM) is shown below!

As you prolly know, a 2019 Tulane survey is now also underway, thanks to Quantum!



Links to POIS Research Studies abstracts (Those articles cannot be accessed in full for free, because of copyright issues) :


http://www.ncbi.nlm.nih.gov/pubmed/11995603

http://www.ncbi.nlm.nih.gov/pubmed/21241453

http://www.ncbi.nlm.nih.gov/pubmed/21241454

http://www.ncbi.nlm.nih.gov/pubmed/25630453

http://onlinelibrary.wiley.com/doi/10.1111/j.1743-6109.2010.01707.x/abstract

Poster Presentation: http://f1000research.com/posters/1758

http://casereports.bmj.com/content/2010/bcr.10.2009.2359.short?rss=1

https://www.researchgate.net/publication/316834619_Post-Orgasmic_Illness_Syndrome_Where_Are_We    ( 2017-07, new article, available in whole, but it is only a short review )

http://www.smr.jsexmed.org/article/S2050-0521(17)30116-6/abstract  ( 2017 Review article by Department of Urology of Tulane University)

https://www.sciencedirect.com/science/article/pii/S2050116118300199 ( Korean case report, 2017-12, full article available for free)

https://www.nature.com/articles/s41443-019-0154-7    ( article published by LPM following the POIS 2018 survey done online, in which many members here have participated) 
full article at :   https://rdcu.be/bFIqy   

Link to Waldinger's latest review article (August 2016) on POIS, Full text - - Quantum: this entire post sent to NORD researchers :

http://tau.amegroups.com/article/view/11107/11778


« Last Edit: July 26, 2019, 01:23:21 AM 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

demografx

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #67 on: July 25, 2019, 09:56:52 PM »
Keep your fingers crossed. As early as August 2019 could be the start date for our 2019-2020 NORD Study if everything falls in to place!
« Last Edit: July 26, 2019, 12:13:43 AM 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: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #68 on: July 26, 2019, 03:20:54 PM »
The doctors I spoke to have very strong criticism to the auto-immune theory, and are very frustrated that the new research is going to commit time towards this theory that Waldinger unfortunately hypothesized without proof. They believe time is much more well spent testing neurological changes that lead to the many brain symptoms in POIS. Since these are the symptoms harder to treat with POISers.
This is not a criticism of the new investigation though, it's an expression of frustration that I totally understand. Regardless in their belief that POIS is mostly a neurological disease.

demografx

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #69 on: July 26, 2019, 03:29:04 PM »
My impression, Nas, is that they’re not very fond of the auto-immune theory either. But since the literature addresses it, they must at least spend *some* time on it. Just my speculation.
« Last Edit: July 26, 2019, 03:32:05 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: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #70 on: July 26, 2019, 03:31:58 PM »
My impression, Nas, is that they’re not very fond of the auto-immune theory either. But since the literature addresses it, they must at least spend *some* time on it. My speculation.
Who? the investigation team?

demografx

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #71 on: July 26, 2019, 03:32:22 PM »
Yes
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: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #72 on: July 26, 2019, 03:38:38 PM »
They believe time is much more well spent testing neurological changes that lead to the many brain symptoms in POIS.

What test do they suggest?

Nas

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #73 on: July 26, 2019, 03:40:34 PM »
My impression, Nas, is that they’re not very fond of the auto-immune theory either. But since the literature addresses it, they must at least spend *some* time on it. Just my speculation.
Yeah, the doctors also recognize that. Debunking the most popular hypothesis of POIS is definitely part of investigative work.

Nas

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #74 on: July 26, 2019, 03:42:30 PM »

What test do they suggest?
Very specific equipment that you probably not gonna have access to in clinics. I'll ask them about the specific devices if you want though.

Muon

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #75 on: July 26, 2019, 03:48:36 PM »

What test do they suggest?
Very specific equipment that you probably not gonna have access to in clinics. I'll ask them about the specific devices if you want though.
Yes why not.

Nas

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #76 on: July 26, 2019, 04:06:24 PM »

Yes why not.
So it really depends on where you want to investigate.
For example if you're looking within the dopamenergic pathway, you need a pet/mri, which is hard to get access to.
But if you could, which would probably cost a s*** tone, why not give it a test?!
« Last Edit: July 26, 2019, 04:08:39 PM by Nas »

Muon

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #77 on: July 26, 2019, 04:10:55 PM »

Yes why not.
So it really depends on where you want to investigate.
For example if you're looking within the dopamenergic pathway, you need a pet/mri, which is hard to get access to.
But if you could, which would probably cost a s*** tone, why not give it a test?!
Is this coming from yourself or are these words theirs?

Nas

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #78 on: July 26, 2019, 04:12:46 PM »
s this coming from yourself or are these words theirs?
No it's theirs, why?

Muon

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #79 on: July 26, 2019, 04:19:33 PM »
s this coming from yourself or are these words theirs?
No it's theirs, why?
Because you did get that answer very quickly.