Author Topic: NORD Interim Report for POIS Study  (Read 226466 times)

FloppyBanana

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Re: NORD Interim Report for POIS Study
« Reply #20 on: November 21, 2015, 04:22:05 AM »
Hi Stef,

Do you think it will possible for us to get the report before the new year?
Thanks FB
30 years of POIS. Mytelase after O with Iceman breathing technique.

Stef

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Re: NORD Interim Report for POIS Study
« Reply #21 on: November 21, 2015, 04:25:07 PM »
Hi, Floppy --

The answer is yes -- without question.

I'm guessing that the interim report will come through within the next week or two.

Stef

demografx

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Re: NORD Interim Report for POIS Study
« Reply #22 on: November 21, 2015, 08:43:16 PM »
Thanks, Stef!
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: NORD Interim Report for POIS Study
« Reply #23 on: December 02, 2015, 04:23:24 PM »
(Cross-posted from Familiar Place)

RUTGERS POIS STUDY UPDATE

Daveman and I have been in touch with Jacqueline Kraska, Research Programs Manager at NORD, a few times since the end of October about obtaining the Interim Report.

She has been in touch with Dr Komisaruk a number of times about it.

With her permission to post this on our forum, this is Jacqui's most recent reply to me and Daveman [my edits in brackets]:

On Dec 2, 2015, at 10:22 AM, Jacqueline Kraska <jkraska@rarediseases.org> wrote:

Dear [demo and Daveman],

I just got in touch with the PI [Principal Investigator, Dr Komisaruk/Rutgers] who has promised to send me the report by the end of next week. He said the delay was due to juggling multiple deadlines at the end the semester. I will make sure I send you the information as soon as I have it.

Kind regards,
Jacqui

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: NORD Interim Report for POIS Study
« Reply #24 on: December 02, 2015, 04:50:22 PM »
Jacqui just now followed up with this:

"I have also asked the PI to pay particular attention to the section I can share with you and be as comprehensive as he possibly can. All the best, Jacqui"
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

Prancer

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Re: NORD Interim Report for POIS Study
« Reply #25 on: December 03, 2015, 04:47:05 PM »
This is great news demografx! Thanks

demografx

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Re: NORD Interim Report for POIS Study
« Reply #26 on: December 03, 2015, 10:00:18 PM »
Thanks Prancer, and everyone else, for your patience!
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

Scary sheep

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Re: NORD Interim Report for POIS Study
« Reply #27 on: December 04, 2015, 01:19:10 AM »
Thanks for keeping us up to date demo!
Symptoms last 6-7 days. Onset of muscle weakness after 30 seconds. Symptoms include: brain fog, fatigue, depression, pale skin/dark circles under eyes,  digestive problems, difficulty taking a full breath, irritability. NONE of these are present out of POIS.

demografx

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Re: NORD Interim Report for POIS Study
« Reply #28 on: December 04, 2015, 10:24:33 PM »
You're welcome, Scary sheep!
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

daropac

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Re: NORD Interim Report for POIS Study
« Reply #29 on: December 05, 2015, 11:08:49 PM »
Any updates now that its end of week?

demografx

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Re: NORD Interim Report for POIS Study
« Reply #30 on: December 06, 2015, 01:59:01 AM »

Any updates now that its end of week?


"...end of next week", per Jacqui/NORD. As posted previous page.


« Last Edit: December 06, 2015, 03:23:00 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

COLM_2

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Re: NORD Interim Report for POIS Study
« Reply #31 on: December 07, 2015, 12:08:42 PM »
Hoping for some good news before year end holiday !
Formerly user COLM (previous username accidentally deleted). Few decades with POIS.

devastated

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Re: NORD Interim Report for POIS Study
« Reply #32 on: December 07, 2015, 03:01:13 PM »
Really looking forward to this.

less_fogged

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Re: NORD Interim Report for POIS Study
« Reply #33 on: December 07, 2015, 03:11:34 PM »
I can't wait either for at least a bit of real news.
We need to be so so patient...I wish I could get rid of POIS for all of us...for once and for all...
I'd do just about anything for the doctor that can do that

demografx

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Re: NORD Interim Report for POIS Study
« Reply #34 on: December 07, 2015, 04:38:33 PM »
Hoping for some good news before year end holiday !
Really looking forward to this.
I can't wait either for at least a bit of real news.
We need to be so so patient...I wish I could get rid of POIS for all of us...for once and for all...
I'd do just about anything for the doctor that can do that

Thanks, gentlemen!

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

daropac

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Re: NORD Interim Report for POIS Study
« Reply #35 on: December 08, 2015, 11:11:42 AM »
I doubt they can give is much detail regarding the success/failure of their hypothesis.   Indicating either way would ruin the legitimacy of the study going forward due to potential placebo bias for new participants entering the study and expecting new things.

I wouldn't get your hopes up - it will likely just be w progress update to say that theyve been working w a few initial participants without wny inclination of success.

I understand the rationale conceptually, but at the same time we are really suffering here and timing is critical.

demografx

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Re: NORD Interim Report for POIS Study
« Reply #36 on: December 08, 2015, 12:12:58 PM »
I remain open and optimistic.
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

Stef

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Re: NORD Interim Report for POIS Study
« Reply #37 on: December 09, 2015, 05:07:07 PM »
I doubt they can give is much detail regarding the success/failure of their hypothesis.   Indicating either way would ruin the legitimacy of the study going forward due to potential placebo bias for new participants entering the study and expecting new things.

I wouldn't get your hopes up - it will likely just be w progress update to say that theyve been working w a few initial participants without wny inclination of success.

I understand the rationale conceptually, but at the same time we are really suffering here and timing is critical.

Hi, Daropac (and All),

You're right, daropac -- the specifics won't be made available until the paper has been published. Your frustration about this is coming through loud and clear, and I, for one, am in agreement. It's very frustrating!

But just to remind everyone here...NORD will have received a very detailed, in-depth report about Dr. K's research to date. He'll have to report everything, and he will report everything. I have no doubts about this.

So -- while only snippets might be included in the public portion of this interim report, the actual report will be loaded with information.

Also, just to alleviate some possible fears -- if the study wasn't panning out, Dr. K would report it to NORD and the study would be stopped mid-stream. But that's not the case. I had been in touch with Dr. K several weeks ago about something (not related to this study), and he commented that interesting/important information was coming out of this study. I had not asked. He just spontaneously mentioned it.

So -- be optimistic!

Demo is right -- be open-minded and optimistic about this first-ever POIS study!

Stef

demografx

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Re: NORD Interim Report for POIS Study
« Reply #38 on: December 09, 2015, 09:07:10 PM »
Stef!
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

Stef

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Re: NORD Interim Report for POIS Study
« Reply #39 on: December 09, 2015, 09:48:15 PM »
You're welcome, demo!

Stef