POIS NORD RESEARCH STUDY

[Nas]

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]

Thanks, Nas.

[demografx]

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.

[demografx]

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
 

[BoneBroth]

Where are the results of all the main POIS Surveys taken place here. Are they possible to download for me somewhare?

[demografx]

This thread is about the upcoming NORD study only.

[demografx]

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

[demografx]

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!

[Nas]

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]

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.

[Nas]

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]

Yes

[Muon]

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]

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]

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]

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]

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?!

[Muon]

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]

s this coming from yourself or are these words theirs?

No it's theirs, why?

[Muon]

s this coming from yourself or are these words theirs?

No it's theirs, why?

Because you did get that answer very quickly.