Author Topic: Our New RFP ( Request For Proposal) for the new study is out !  (Read 77681 times)

fernab

  • Full Member
  • ***
  • Posts: 211
Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #120 on: March 06, 2019, 12:37:22 PM »
Hi Demo,

Have they began with the research program?.... Or not yet?
« Last Edit: March 06, 2019, 02:53:25 PM by fernab »

Muon

  • Hero Member
  • *****
  • Posts: 2632
    • MCAD Thread
Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #121 on: March 06, 2019, 12:38:27 PM »
I thought you were located in Chile Demo???

demografx

  • Administrator
  • Hero Member
  • *****
  • Posts: 6091
  • All of us working together to defeat POIS!
Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #122 on: March 06, 2019, 02:50:52 PM »
Muon, Daveman, our co-founder/admin, is from Chile.
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

  • Administrator
  • Hero Member
  • *****
  • Posts: 6091
  • All of us working together to defeat POIS!
Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #123 on: March 06, 2019, 02:55:10 PM »
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).


« Last Edit: March 06, 2019, 02:57:21 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

  • Administrator
  • Hero Member
  • *****
  • Posts: 6091
  • All of us working together to defeat POIS!
Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #124 on: March 06, 2019, 02:59:45 PM »
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!
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

fernab

  • Full Member
  • ***
  • Posts: 211
Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #125 on: March 06, 2019, 03:00:44 PM »
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

  • Administrator
  • Hero Member
  • *****
  • Posts: 6091
  • All of us working together to defeat POIS!
Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #126 on: March 06, 2019, 03:25:30 PM »
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/
« Last Edit: March 06, 2019, 11:57:13 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

fernab

  • Full Member
  • ***
  • Posts: 211
Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #127 on: March 06, 2019, 03:38:34 PM »
Ok Demo, thx for the info. Sounds good.

demografx

  • Administrator
  • Hero Member
  • *****
  • Posts: 6091
  • All of us working together to defeat POIS!
Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #128 on: March 24, 2019, 03:36:53 PM »
« Last Edit: March 24, 2019, 03:38:37 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

fernab

  • Full Member
  • ***
  • Posts: 211
Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #129 on: March 27, 2019, 10:45:35 AM »
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

  • Administrator
  • Hero Member
  • *****
  • Posts: 6091
  • All of us working together to defeat POIS!
Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #130 on: March 27, 2019, 12:25:43 PM »
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.
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

fernab

  • Full Member
  • ***
  • Posts: 211
Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #131 on: March 27, 2019, 12:30:10 PM »
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/
« Last Edit: March 27, 2019, 12:33:43 PM by fernab »

Nas

  • Hero Member
  • *****
  • Posts: 1081
Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #132 on: March 27, 2019, 12:36:57 PM »
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

  • Full Member
  • ***
  • Posts: 211
Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #133 on: March 27, 2019, 12:42:47 PM »
Hi Nas,

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

demografx

  • Administrator
  • Hero Member
  • *****
  • Posts: 6091
  • All of us working together to defeat POIS!
Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #134 on: March 27, 2019, 01:54:20 PM »
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! :)


« Last Edit: March 27, 2019, 01:56:11 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

  • Administrator
  • Hero Member
  • *****
  • Posts: 6091
  • All of us working together to defeat POIS!
Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #135 on: March 27, 2019, 06:03:36 PM »
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!!


« Last Edit: March 27, 2019, 08:39:19 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

  • Administrator
  • Hero Member
  • *****
  • Posts: 6091
  • All of us working together to defeat POIS!
Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #136 on: March 27, 2019, 06:23:02 PM »

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! “
« Last Edit: March 27, 2019, 08:41:20 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

  • Hero Member
  • *****
  • Posts: 1081
Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #137 on: March 27, 2019, 07:18:49 PM »

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!
« Last Edit: March 27, 2019, 08:02:08 PM by demografx »

demografx

  • Administrator
  • Hero Member
  • *****
  • Posts: 6091
  • All of us working together to defeat POIS!
Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #138 on: March 27, 2019, 07:25:51 PM »
Thanks, Nas!


« Last Edit: March 27, 2019, 07:35:41 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

fernab

  • Full Member
  • ***
  • Posts: 211
Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #139 on: March 28, 2019, 03:24:23 AM »
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!
« Last Edit: March 28, 2019, 03:44:29 AM by fernab »