Author Topic: POIS 2021-2022 NORD RESEARCH STUDY  (Read 54978 times)

devastated

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #220 on: March 25, 2020, 04:04:19 AM »
I'm afraid that this coronavirus lockdown will cause an indefinite delay in the progress of this critical research. Well, aren't we unlucky, after waiting for so long...

Let's really hope an antidote is discovered soon.

ElVelero

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #221 on: March 25, 2020, 11:16:39 AM »
Well, first of all, the research give all of us HOPE and I'm really optimist about what could bring to us this study.
Sadly it will be delayed because of the pandemic but after it, advances will be made I think. (Probably around in the second half of the year)

Thanks everyone who makes this possible, as a young man with POIS it gives me hope about not having to deal with this when I marry someone or I have a work!

Best wishes to all the researchers if your are reading this! You are amazing for helping this community that has not being taken seriously in many time!

demografx

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #222 on: March 25, 2020, 05:33:52 PM »
ElVero, thank you, I’m sending this to the researchers now! :)
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

Ricardo Brasil

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #223 on: March 28, 2020, 04:34:24 AM »
Well, first of all, the research give all of us HOPE

I certainly do not interact much, but I am always following the news of the forum and I ALWAYS come in this topic to follow the updates on this research! It represents hope for me too, this syndrome has already hindered my life too much, I really am not the same person I was before adolescence, I remember that I felt happier more easily and that my thinking was much faster than it is today, I feel every day that passes as if I am losing my life.

This year I finish my college, degree in mathematics, but I don't know if I will be able to lead a teaching career due to the cognitive effects of POIS, I am afraid of not being able to organize my thoughts in the classroom.

Relationships, without a chance, since adolescence I already had in mind that I would live alone.

I really wanted to be part of the research as a volunteer, but I am from Brazil and at the moment I am not able to travel, so I am really hoping that through this research they will discover the cause and possibly a cure, it will make a huge difference in the lives of many people.

(I have already contacted Dr. Dr Keity Souza Santos, but unfortunately she cannot help me)
« Last Edit: March 28, 2020, 04:38:32 AM by ricardo brasil »

demografx

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #224 on: April 01, 2020, 01:03:14 AM »
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

Limejuice

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #225 on: April 01, 2020, 02:24:17 AM »

Los Angeles POIS study discussion @ reddit

https://tinyurl.com/s869zl4



This type of direct communication with the research team is comforting during these uncertain times and creates more transparency.
« Last Edit: April 01, 2020, 10:35:11 AM by demografx »

demografx

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #226 on: April 01, 2020, 05:32:54 PM »


Los Angeles POIS study discussion @ reddit

https://tinyurl.com/s869zl4



This type of direct communication with the research team is comforting during these uncertain times and creates more transparency.


Limejuice, I wholeheartedly agree. In spite of the COVID-19 pausing of the study, they are always right there when we have a question. For example, we just chatted 30 minutes ago!

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

Limejuice

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #227 on: April 09, 2020, 01:06:38 PM »
I bet our research team is using this 'down time' to fine-tune their thinking and approach to our study.  With researchers so motivated and involved this virus challenge could actually be an opportunity.

demografx

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #228 on: April 09, 2020, 08:20:48 PM »
Once again, I agree!
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

certainlypois2

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #229 on: April 10, 2020, 04:47:09 PM »
I bet our research team is using this 'down time' to fine-tune their thinking and approach to our study.  With researchers so motivated and involved this virus challenge could actually be an opportunity.
I like that thinking

demografx

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #230 on: April 10, 2020, 04:52:54 PM »
Thanks, CP2, for the positivity!
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

drop247

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #231 on: May 17, 2020, 07:42:15 PM »
This is incredible. I can't thank you enough Eric.
« Last Edit: May 19, 2020, 08:40:32 AM by demografx »

Muon

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #232 on: May 17, 2020, 07:52:10 PM »
I hope they will include some mast cell mediators.

demografx

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #233 on: May 17, 2020, 08:02:15 PM »
VERY EXCITING POIS RESEARCH NEWS!



“Hey Demo,

My name's Eric and I've been a member of the forum for a while now.  I only learned about the UNL study recently and decided to investigate.  After learning of a few deficiencies as a result of limited funding (they weren't going to look into delayed onset symptoms and other autoimmune/inflammatory biomarkers) I decided to get in contact with them to see how much funding they would require to expand their study to cover the things I thought were important.

I asked them to give me numbers for how much they would need for the basic additions I requested along with any other ones they could think of for their "dream" study.  They came back to me with some ideas which I thought were good.

I and my family's foundation have decided to fully fund the "dream" study!  Before I gave them the go ahead, I had asked Quantum if he knew any medical researchers in the forum I could contact.  That's why I'd gotten in touch with him prior.  Thanks again Quantum! 

I also reached out to an autoimmune researcher friend of mine for suggested expansions to the study and she gave me a few that Tierney and Nicole hadn't thought of so those might be added too.

The study will be tracking more inflammatory biomarkers, including delayed onset people, adding research assistants, larger sample size, etc.  I've been asked not to share their hypotheses or the study proposal so I can't share those details.  Suffice it to say, the study should be more comprehensive than before and hopeful allow for some real progress.

I'm personally deeply motivated to increase visibility and research for POIS (since it's taken away a lot of joy from my life).  This study seems like a great start.

Thanks for all your hard work organizing this study!  The funding is almost the easy part, I think what you did was incredible.  Hope you keep up your good work!

Thanks,
Eric”

Thank you, Eric!
Best wishes!
Demo
« Last Edit: May 18, 2020, 04:18:48 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

Limejuice

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #234 on: May 17, 2020, 11:29:57 PM »
That's incredibly generous and exciting Eric! We are extremely lucky to have your support!
« Last Edit: May 19, 2020, 08:39:26 AM by demografx »

Clues

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #235 on: May 18, 2020, 03:16:49 AM »

I [Eric] and my family's foundation have decided to fully fund the "dream" study!


This blew my mind. Eric, thank you so much from the bottom of my heart.

I share Muons hope that they'll look at mast cell activation as part of the study.
« Last Edit: May 19, 2020, 08:38:32 AM by demografx »

hurray

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #236 on: May 18, 2020, 02:27:53 PM »
What amazing news! Thank you Eric  :)
« Last Edit: May 19, 2020, 08:35:23 AM by demografx »

Hopeoneday

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #237 on: May 18, 2020, 04:13:38 PM »
This is briliant , a POISer’s dream,
win a lottery and then fund POIS research.
« Last Edit: May 19, 2020, 08:43:42 AM by demografx »
Dr-pois.

demografx

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #238 on: May 18, 2020, 04:16:21 PM »
Thanks for posting, HOD
« Last Edit: May 18, 2020, 04:23:58 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

certainlypois2

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #239 on: May 19, 2020, 02:47:33 AM »
THANKS ERIC
« Last Edit: May 19, 2020, 08:29:48 AM by demografx »