NORD Interim Report for POIS Study

[demografx]

Well... there isn't [a better resource] and I will stick more to figure out more about what you people say but till now I'm not finding anything
Still, even if we kinda the only website that deals with this syndrome, that is a bigger responsibilty to dig even deeper and do more reaserch
I all ways have this philosophy in my mind when I face problems : ( Life is fair, but the problems we face are because of the mistakes we do, and one big mistake is or
our lack of knowledge... )

Nas, I know that it's a lot to expect that Dr Komisaruk had all the answers,  but his research is more than we've had in a  long time and I'm sure it will shed light enough to lead to the next step.

Digging deeper costs money.  Any good news will help to stimulate further investigation/and the donations that contribute to that.

Many of us here put good hard earned dollars into getting this investigation started.

Any other digging on internet or personally had shown very little real product. 

Just conjecture.

[Habibou]

To reply to Nas;
Even with hard POIS and depression, I still have plenty of friends and had many girlfriends. You can't blame all the time POIS.
I pushed and keep myself pushing to do the first step and meet new people.
I found a job abroad and went for adventures while english is not my maternal language.

All what we could/can do it donate for the research!
Nas, did you personally pledged for this investigation at least???
I assume the answer is a big YES since not donating for this research IS indeed a big mistake ..

[demografx]

Excellent points, Habibou.

[username]

"A preliminary interpretation of our current data is that POIS symptoms are accompanied by a lowered heart rate and heart rate variability (HRV), and that vagal stimulation may produce a beneficial effect on POIS symptoms (increased heart rate and HRV) as a 're-bound' from the vagal stimulation. These are very preliminary findings and continued research with additional participants is underway, to assess the reliability of these findings."

I am extremely sorry but i am bit about reports ......the mentioned is the 1 or 2 ?? if its 2 then where is 1.........plz help

[demografx]

yes, username, you posted #2...below is #1:


"The IRB applications authorizing our study have been approved, the POIS questionnaire characterizing relevant medical history and symptomatology has been developed, site-tested, and expanded, and will now, upon IRB approval, be distributed to the POIS forum for more extensive response and analysis.

POIS sufferers have been contacted, interviewed, and local POIS persons will be the first to participate in the physiological interventions. The necessary equipment has been obtained, the physiological measurement methods have been developed and are functioning properly, and the necessary fMRI procedures and analysis methods have been developed and are ready to be deployed."

[username]

yes, username, you posted #2...below is #1:


"The IRB applications authorizing our study have been approved, the POIS questionnaire characterizing relevant medical history and symptomatology has been developed, site-tested, and expanded, and will now, upon IRB approval, be distributed to the POIS forum for more extensive response and analysis.

POIS sufferers have been contacted, interviewed, and local POIS persons will be the first to participate in the physiological interventions. The necessary equipment has been obtained, the physiological measurement methods have been developed and are functioning properly, and the necessary fMRI procedures and analysis methods have been developed and are ready to be deployed."

THANKS DEMO  and we are waiting for 3rd one ? which is about to be out .....any date?

[demografx]

Yes, username, we are waiting for the 3rd one.

And #4 (final) is expected September 18, 2016.

And when published in a medical journal it will be much more extensive, much more detailed.

[demografx]

Thank you for posting, username, I'm sure other people here had the same questions in mind.

[Raj]

It may sound stupid but any update on when the 3rd one is going to be out?

[demografx]

Raj, "any day now" is what we've been told by NORD. It's been completed by Rutgers, and submitted to NORD -- but needs to be reviewed by senior medical advisors at NORD. These advisors have many reports to review at this time.

[Nas]

To reply to Nas;
Even with hard POIS and depression, I still have plenty of friends and had many girlfriends. You can't blame all the time POIS.
I pushed and keep myself pushing to do the first step and meet new people.
I found a job abroad and went for adventures while english is not my maternal language.

All what we could/can do it donate for the research!
Nas, did you personally pledged for this investigation at least???
I assume the answer is a big YES since not donating for this research IS indeed a big mistake ..

I don't have a visa card or a bank account or a life so no I didn't, and yeah once you loose all of your social skills once you masturbate good luck with finding friends without feeling socially retarded

[Nas]

Wait, So I was thinking if the immune system attacks its own sperms in the urinary tract wouldn't be one solution is to replase the penis urinary tract to an artificial one ? I hope you get the idea cause I don't know how to say it

[demografx]

THANKS TO FB...for starting a thread (viewing only) that shows the Interim NORD-POIS Rutgers reports:

Hi,

This thread has been created not for discussion but only for posting POIS study updates:

http://poiscenter.com/forums/index.php?topic=2285.msg18645#msg18645

Please contact me [FloppyBanana] via private message if you wish to post something here (eg media links related to Dr. Komisaruk's study etc).

[demografx]

On Mon, Apr 11, 2016 at 4:13 PM, demografx wrote:

...no estimate yet of when MAC review for POIS study will finish?

Best,
demo




On Apr 11, 2016, at 4:35 PM, Jacqueline Kraska/NORD wrote:

Hi demo,

Sorry, I haven't been ignoring you. Just been very busy and unfortunately often in meetings...

I have not yet heard from MAC but expect to this week. I will follow up with the chair and see if she can confirm an time.... With regards to publishing [POIS interim reports] on our website and elsewhere, we have had one meeting but follow up regarding the discussion needs to take place so I plan to meet again with communications next week.

I'll be in touch ASAP - promise.

Kind regards,
Jacqui


Jacqueline Kraska
Research Programs Manager
National Organization for Rare Disorders
55 Kenosia Avenue
Danbury, CT 06810
Office:  (203) 304-7205
Work cell:  (475) 529-5172

[Habibou]

To reply to Nas;
Even with hard POIS and depression, I still have plenty of friends and had many girlfriends. You can't blame all the time POIS.
I pushed and keep myself pushing to do the first step and meet new people.
I found a job abroad and went for adventures while english is not my maternal language.

All what we could/can do it donate for the research!
Nas, did you personally pledged for this investigation at least???
I assume the answer is a big YES since not donating for this research IS indeed a big mistake ..

I don't have a visa card or a bank account or a life so no I didn't, and yeah once you loose all of your social skills once you masturbate good luck with finding friends without feeling socially retarded

Well, thats the thing! I do have 2 O per week with my girlfriend and I push myself while I am socially retarded.. I just don't let POIS win as you currently do

[demografx]

I just don't let POIS win...

[demografx]

Cross-posted from "...familiar place" thread:

...Current medical practises regarding [POIS] research, recognition, etc. can only improve even if it still feels like its going at a snails pace...

Thanks, less_fogged, your words above helped me become a little more patient.

So...I hope others will feel the same way.

It's not easy...waiting!

[demografx]

...finding friends without feeling socially retarded.

"socially retarded" ...excellent choice of words. Never heard that expression before.

Thanks, Habibou & Nas

[demografx]

is reviewing the Interim POIS Report to be posted here ~~ completed by

[demografx]

On Wed, Apr 13, 2016 at 12:29 AM, demografx wrote:

Hi Jacqui. From your [previous] email, "I have not yet heard from MAC but

expect to this week....I will follow up with the [MAC] chair and see if she can

confirm a time."

Jacqui, please let us know what the chair says.

Thanks again.

demo






On Apr 13, 2016, at 6:44 AM, Jacqueline Kraska/NORD wrote:

Hi demo,

I just followed up and asked if the Chair [of MAC] could give her approval to share specifically the report from B Komisaruk [with POISCenter forum members] before the rest of the assessment is complete.... Hopefully it will be sent back before the rest of them... I'll let you know ASAP.

All the best,
Jacqui