Our New RFP ( Request For Proposal) for the new study is out !

[fernab]

Hi Demo,

Have they began with the research program?.... Or not yet?

[Muon]

I thought you were located in Chile Demo???

[demografx]

Muon, Daveman, our co-founder/admin, is from Chile.

[demografx]

Hi Demo,

Have they began with the investigation program?.... Or not yet?

Fernab, we’re only at the beginning contractual stages between NORD and our investigative team

I am, however, in touch with them about weekly. Just simple things, e.g., videos they’ve made (see previous page).

[demografx]

Dr. Nicole Prause, our POIS Research Co-investigator

Her lab is 20 minutes from my house, so I will visit, either as POISCenter representative, POIS Research study volunteer, or both.

God's speed!

Noted, Nas!

[fernab]

Ok, Demo. I don't know how this things normally goes. Will they share with us any schedule? I mean start date and how long will last the research? For instance?

[demografx]

fernab, the contract is for one year. We haven’t officially “started” yet. Prolly April.

We will get periodic progress summaries from NORD. The investigators only get paid as they demonstrate progress - in writing - according to guidelines established by NORD’s MAC (the investigators’ “boss”):

https://poiscenter.com/forums/index.php?topic=2462.msg21005#msg21005

This link is more up-to-date:
https://rarediseases.org/about/leadership/medical-advisory-committee/

[fernab]

Ok Demo, thx for the info. Sounds good.

[demografx]

From our 2019 POIS Study co-investigator:

http://www.jonlevytlb.com/the-science-of-sex-with-dr-nicole-prause/

[fernab]

Hi Demo,

Do you know if our researchers (Tierney Lorenz and Nicole Prause) will take into account all the possible root causes for POIS commented all around this Forum? .... Like for instance the possible theory of any latent herpes virus family infection, or the use of some drugs as finasteride (5-alpha-reductase) producing an hormonal imbalance, or many others theories...?

[demografx]

fernab, at this time, I only know what you know, that  the researchers (and NORD) have decided to look into “autonomic, endocrine, and immune mediators of POIS”. The 2 players (NORD and the investigators) really call the research, methodology and implementation shots. But I can tell you that - based on my interactions with them thus far - they are very empathetic to our suffering and will try hard to help us within our very modest research budget. I sense flexibility.

In that vein, I hope they can or will consider requests just as you have now made.

[fernab]

Ok Demo, thank you for the info.

Just in case herpes virus family was confirmed to be behind POIS.... It seems there is a promising vaccine solution to herpes virus even as a therapeutical solution for those already with a latent virus infection:

http://www.virology.ws/2018/05/24/a-live-attenuated-herpes-simplex-virus-vaccine-candidate/

[Nas]

Hi Demo,

Do you know if our researchers (Tierney Lorenz and Nicole Prause) will take into account all the possible root causes for POIS commented all around this Forum? .... Like for instance the possible theory of any latent herpes virus family infection, or the use of some drugs as finasteride (5-alpha-reductase) producing an hormonal imbalance, or many others theories...?

They're most likely going to build on previous papers published on POIS, hence the title of their investigation. So don't expect them to tackle stuff we talk about in this forum, I don't even expect that they read some of the stuff on this forum.

[fernab]

Hi Nas,

Probably it will be as you say... But Demo says he senses flexibility.... We will see anyway....

[demografx]

Hi Demo,

Do you know if our researchers (Tierney Lorenz and Nicole Prause) will take into account all the possible root causes for POIS commented all around this Forum? .... Like for instance the possible theory of any latent herpes virus family infection, or the use of some drugs as finasteride (5-alpha-reductase) producing an hormonal imbalance, or many others theories...?

They're most likely going to build on previous papers published on POIS, hence the title of their investigation. So don't expect them to tackle stuff we talk about in this forum, I don't even expect that they read some of the stuff on this forum.

Hi Nas,

Probably it will be as you say... But Demo says he senses flexibility.... We will see anyway....

I agree with both of you!

[demografx]

Hi Demo,

Do you know if our researchers (Tierney Lorenz and Nicole Prause) will take into account all the possible root causes for POIS commented all around this Forum? .... Like for instance the possible theory of any latent herpes virus family infection, or the use of some drugs as finasteride (5-alpha-reductase) producing an hormonal imbalance, or many others theories...?

fernab, I sent your Q. above - - and my posted reply to you - - to the researchers. I just got a reply:

“Thanks for the heads up Demo

In response to fernab’s question - we will be testing two specific theoretic models for POIS symptoms: auto-allergy to ejaculate vs. autonomic-endocrine dysregulation leading to hyperactive inflammatory responses following arousal and orgasm. Sadly we will not have the ability to systematically test all of the possible mechanisms, nor all of the treatments that have been developed by the community. I am amazed at the ingenuity and the persistence of the POISCenter users, and all of the work they have done to try to sound out their own theories - these efforts should be commended. But for the purposes of this research we need to take things one at a time in a systematic way, in a large enough sample to draw sound conclusions. Hence our focus on these two specific models.

That said, we will be asking as many questions as we can of the folks who participate, to try to understand how their in-lab results match up to their experiences, symptoms, treatment histories, etc. So understanding what sorts of questions are worth asking (e.g., have you ever used finasteride) is extremely important - and for that, we are actively looking through the POISCenter forum to think carefully about those assessments. Fernab and the other users can rest assured that we are listening!
TKL“



I replied with: MANY THANKS!!

[demografx]

So don't expect them to tackle stuff we talk about in this forum, I don't even expect that they read some of the stuff on this forum.

Nas, you, Quantum and others have expressed that sentiment. I disagree that it’s true here with this new group.

Dr. L (Dr Lorenz uses that name for many patients & students) wrote:

“...we are actively looking through the POISCenter forum to think carefully about those assessments. Fernab and the other users can rest assured that we are listening! “

[Nas]

So don't expect them to tackle stuff we talk about in this forum, I don't even expect that they read some of the stuff on this forum.

Nas, you, Quantum and others have expressed that sentiment. I disagree that it’s true here with this new group.

Dr. L (Dr Lorenz uses that name for many patients & students) wrote:

“...we are actively looking through the POISCenter forum to think carefully about those assessments. Fernab and the other users can rest assured that we are listening! “

Awesome reply!

[demografx]

Thanks, Nas!

[fernab]

You were totally right Demo! Seems Dr. L is very sensitive to our forum! I find it fantastic!

As researchers, I completely understand that they need to take one thing a time and explore it in a systematic way. I totally agree on that. Suppose this is the normal procedure in any serious research work.

But I tought that we all already knew that POIS it is not due to an auto-allergy to semen. Are they study it just to confirm that It is not due to this? And try to prove It is rather due to autonomic-endocrine dysregulation?

Suppose it is something like this.... For sure there is a good reason they do it like this. I totally trust them... No need you pass this question again to them. We will see anyway. It is just to talk between us. Thank you so much to pass my previous question Demo!