POIS NORD RESEARCH STUDY

[Egyptian ahmad]

Update?
Also can i contact the doctors in the study? I am a doctor myself maybe i can provide insight.

[JayDeeSee]

I'm guessing we should give up hope of this ever happening?

[demografx]

I'm guessing we should give up hope of this [NORD: POIS Research Study] ever happening?

No, JayDeeSee,  the laboratory for human study of POIS is almost completely constructed at UCLA!

[demografx]

Dr. Nicole Prause, co-investigator of our upcoming
POIS Research Study got a chance to talk a little POIS in this podcast!
https://youtu.be/ImsB_q-5IIM?feature=shared&t=2100


Please watch the above video to get a better idea of what’s coming soon with our upcoming
POIS Research Study!

Demo

I think that we even now have evidence that pois is an immune driven condition…

October 25, 2024



From: Dr. Tierney K. Lorenz
Principal Investigator
NORD: POIS Research Study
https://poiscenter.com/forums/index.php?topic=3006.0

”It depends on what we mean by "an immune driven condition." If Hopeoneday means there is sufficient evidence that the immune system is dysfunctional in POIS, I think that's certainly true - it would be hard to produce the symptoms of POIS without some involvement from the immune system. But the specifics are more murky - we don't really know if POIS is an autoimmune condition like IBS or MS, or closer to an allergic condition (like asthma), or something else entirely. That's a big goal of the research right now!

TKL”

[Above emphasis mine.
Demo]

[demografx]

POIS Study Update?

See our recent forum posts:
https://tinyurl.com/yy97dfue

Also can i contact the doctors in the study? I am a doctor myself maybe i can provide insight.

I sent you 2 Private Messages.
https://poiscenter.com/forums/index.php?action=pm

Best regards,
Demo

[demografx]

I think that we even now have evidence that pois is an immune driven condition…

October 25, 2024



From: Dr. Tierney K. Lorenz
Principal Investigator
NORD: POIS Research Study
https://poiscenter.com/forums/index.php?topic=3006.0

”It depends on what we mean by "an immune driven condition." If Hopeoneday means there is sufficient evidence that the immune system is dysfunctional in POIS, I think that's certainly true - it would be hard to produce the symptoms of POIS without some involvement from the immune system. But the specifics are more murky - we don't really know if POIS is an autoimmune condition like IBS or MS, or closer to an allergic condition (like asthma), - - or something else entirely - -
That's a big goal of the research right now!

TKL”

[Above emphasis mine.
Demo]

[demografx]

I think that we even now have evidence that pois is an immune driven condition…

October 25, 2024



From: Dr. Tierney K. Lorenz
Principal Investigator
NORD: POIS Research Study
https://poiscenter.com/forums/index.php?topic=3006.0

”It depends on what we mean by "an immune driven condition." If Hopeoneday means there is sufficient evidence that the immune system is dysfunctional in POIS, I think that's certainly true - it would be hard to produce the symptoms of POIS without some involvement from the immune system. But the specifics are more murky - we don't really know if POIS is an autoimmune condition like IBS or MS, or closer to an allergic condition (like asthma), - - or something else entirely - -
That's a big goal of the research right now!

TKL”

[Above emphasis mine.
Demo]

[Aladin]

Are the researchers also gonna look into possible gene therapy?  I see that NORD is specialised in this...

[demografx]

Are the researchers also gonna look into possible gene therapy?  I see that NORD is specialised in this...

I’ll ask, Aladin.

[demografx]

Are the researchers also gonna look into possible gene therapy?  I see that NORD is specialised in this...

I’ll ask, Aladin.

From Dr. Nicole Prause, POIS Research Study:

“Gene therapy would need to start with the identification of a gene. This is uniquely challenging with rare disorders, because a very large sample is needed to identify the genes that even could be linked. I do work with genetic markers in large databases in the USA, but these are for liver diseases that are remarkably common...and still difficult to find genes for targeting.“

[freuemich]

Hello, guys.

Do they have any idea of when the study results will be available for us?

Edit:

Additionally, I?m curious if the study might provide any insights into a potential underlying infection. I recall being bitten by an insect a few months before my symptoms worsened. The site of the bite developed a lesion that seemed quite similar to those associated with Lyme disease.

[demografx]

Do they have any idea of when the study results will be available for us?

The study is just now getting underway with preparatory work at the UCLA laboratory. Soon, we will be recruiting volunteer POISers (and non-POISers) for intensive biophysical measurements, analysis and follow-up.

[Aladin]

Do you know whether they will also do gene analysis?

[demografx]

This is an old post, but some of you
might not have seen it yet.

Best,
Demo

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 [NORD] 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 hopefully 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

[demografx]

Dr. Nicole Prause, co-investigator of our
POIS Research Study got a chance to talk a little POIS in this podcast!
https://youtu.be/ImsB_q-5IIM?feature=shared&t=2100


Please watch the above video to get a better idea of what’s coming soon with our upcoming, major
POIS Research Study!

Demo

[demografx]

Do you know whether they [our POIS researchers] will also do gene analysis?

Not this time, Aladin.