Poll

If you qualify for the POIS study, and you decide to go as a POIS research study volunteer, is Los Angeles ok as a destination for you?

Yes
7 (35%)
No
9 (45%)
Not sure (please explain below)
4 (20%)

Total Members Voted: 20

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Author Topic: Informal Poll #3 for our research team  (Read 4881 times)

fernab

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Informal Poll #3 for our research team
« on: June 07, 2019, 05:14:24 PM »
Informal Poll #3 for our research team.
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demografx

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Re: Informal Poll #3 for our research team
« Reply #1 on: June 14, 2019, 01:24:38 AM »



Quote from: fernab on June 07, 2019, 05:14:24 PM

Informal Poll #3 for our research team.


Many thanks, fernab!

Everyone, please come over & just click yes or no :) It’s easy!
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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

joelawerence

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Re: Informal Poll #3 for our research team
« Reply #2 on: June 14, 2019, 08:21:42 AM »
Should have a test centre in London as well for our European folks :P
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33 years old, POIS for around 12 years with increasing severity.
Major symptoms - Severe fatigue, back pain, unrefreshed even after 9+ hours sleep, pain behind eyes, very dry face, bald head with inflamed scalp, digestion issues and constipation. Very low testosterone and high glucose in blood tests

demografx

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Re: Informal Poll #3 for our research team
« Reply #3 on: June 14, 2019, 07:10:11 PM »
joelawerence, I passed your post along to the researchers. This is the 2nd time it came up.
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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: Informal Poll #3 for our research team
« Reply #4 on: June 15, 2019, 10:30:04 AM »
joelawerence, thank you for the comment. Maybe it will encourage their thinking, though my impression is that Dr. Prause & Dr. Lorenz are very much “hands on” researchers and depend on more personalized laboratory feedback.
« Last Edit: June 15, 2019, 10:52:18 AM by demografx »
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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: Informal Poll #3 for our research team
« Reply #5 on: June 15, 2019, 12:34:55 PM »
One further note on this subject: this study is a basic science investigation into the mechanisms that lead to POIS symptoms, not an intervention study. So Dr. Lorenz & Dr. Prause won’t have multiple recruitment sites (like you might see in a treatment study, where there are multiple clinical centers tracking different cohorts of patients). Just the one in Los Angeles, where they can use the very specialized testing center at Liberos, LLC.
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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

joelawerence

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Re: Informal Poll #3 for our research team
« Reply #6 on: June 18, 2019, 09:17:43 AM »
Thanks Demo. Yes, makes sense if complex lab studies are required that it be in one site :)

Unfortunately that would mean that it will be limited to US folks, but hopefully we have enough of them participating for the study.
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33 years old, POIS for around 12 years with increasing severity.
Major symptoms - Severe fatigue, back pain, unrefreshed even after 9+ hours sleep, pain behind eyes, very dry face, bald head with inflamed scalp, digestion issues and constipation. Very low testosterone and high glucose in blood tests

jeejay79

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Re: Informal Poll #3 for our research team
« Reply #7 on: June 20, 2019, 10:25:21 AM »
I agree with JoeLawrence that having a Europe based centre, for the purpose of intervention studies like you mentioned, would be excellent. London would be extremely convenient for me at least, haha! But in all seriousness, yes please! Let's push for one here because I can't stand how long the U.K's NHS takes so long to come to decisions with this horrible illness. My heart would tell me to go to LA for research purposes but it would be too costly at the moment.

Ps. Good luck to all you POIS'ers out there reading this. I wish you all the best.
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Symptoms last 4-7 days: brain fog, itchy/watery eyes, warm sensation in back, difficulty getting full breath, headache, muscle spasms, weak legs, fast heart rate, stomach pain, social isolation, anxiety. Symptoms not present out of POIS state. Currently on daily Fexofenadine and low-histamine diet

demografx

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Re: Informal Poll #3 for our research team
« Reply #8 on: June 20, 2019, 11:30:48 AM »
jeejay79, thanks for your feedback!
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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: Informal Poll #3 for our research team
« Reply #9 on: June 20, 2019, 04:26:46 PM »
joelawerence
and
jeejay79:

I felt that your comments about a European centre were important, so I passed them along to Dr Prause and Dr Lorenz.

Many thanks,
Demo
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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

jeejay79

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Re: Informal Poll #3 for our research team
« Reply #10 on: June 20, 2019, 05:02:22 PM »
Praise to you for doing that, demografx ! It's all for the sake of the cure(s). Have a good day :) One step closer everyday
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Symptoms last 4-7 days: brain fog, itchy/watery eyes, warm sensation in back, difficulty getting full breath, headache, muscle spasms, weak legs, fast heart rate, stomach pain, social isolation, anxiety. Symptoms not present out of POIS state. Currently on daily Fexofenadine and low-histamine diet

demografx

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Re: Informal Poll #3 for our research team
« Reply #11 on: June 20, 2019, 05:38:53 PM »
Thank you, jeejay79! :)
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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
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