Recovered from "The Lost Thread"! (Thanks
to Stef!!)
Dear Barry [from Demo],
I won't keep sending these but I wanted you to see the beginning of this new thread:
Pages: [1]
Author Topic: Progress report re: POIS study (Read 49 times)
Stef
Full Member
Posts: 212
Progress report re: POIS study
« on: Today at 12:45:46 AM »
Hi All,
I'm helping demo and Daveman by posting this brief progress report about the POIS study. There's only good news!
First, Dr. Komisaruk's study is still under review with the Rutgers IRB committee, and there's just no way to speed up this process. Having administered the grant program at NORD for eight years, I can comfortably advise that this is the norm. It's the IRB approval that slows down the start of a research study (but only in the period before the study begins), and these reviews often don't go as quickly as predicted. Every detail -- every single step of Dr. K's a proposed study -- is being scrutinized by the Rutgers IRB. Questions are raised, they must be answered (via email)...changes are made, and then more questions and clarification is required...and so on -- until it's all worked out (which will happen all of a sudden!).
The IRB is charged with assuring the safety and protection of all "human subjects" -- so it has to be a very painstaking process.
Second, demo and Daveman have invited me to participate in their email discussions with Dr. Komisaruk. Having now communicated with Dr. K one-on-one, this is what I want you to know -- you men have got the most INCREDIBLE scientist/humanitarian behind you!!! Dr. Komisaruk understands the misery of POIS -- he gets it! He absolutely cares about the suffering induced by POIS, and he understands that many (if not most) of you have had some awful experiences with physicians in the past.
Dr. K's got your back...there's not a single doubt about it. So please try to bear with the slow-going of the Rutgers IRB approval. It will be have been worth the wait!
Third, demo and/or Daveman will be posting some paperwork at Dr. K's request -- probably in the next 24 hours. He'd like to receive some input from the group about this paperwork. One section is a personal history questionnaire, and the other is the Informed Consent. They are both still only drafts -- under review by the Rutgers IRB -- and Dr. K. wants to know from you if you feel that the information is clear, does the personal history section basically cover the important facts, do you have any suggestions, etc.
(If I could have figured out how to attach these pages, they'd be here right now. But IT is definitely not my strong point -- so demo and/or Daveman will post it.)
So, that's the progress to date. It might not sound like a lot of progress -- but there is a ton of behind-the-scenes activity going on -- and there's definitely progress!
The best thing about it all is that you've got Dr. Barry Komisaruk in your corner. (It really was terrific that demo met with him -- he spoke for all of you and provided Dr. K with invaluable information about the POIS experience. Dr. K. will have your welfare at the forefront of this study.
That's it for now. Soon you'll be hearing from one or both of your moderators.
Stay strong!
Stef
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sameer7777
Sr. Member
Posts: 445
Kik me "sameeraffandi"
Re: Progress report re: POIS study
« Reply #1 on: Today at 05:45:52 AM »
Thank you much stef !!!
It's relief to read this .
Thanks again desperately waiting for some good news ....
Take care
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We should intereact more plzzzzz
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Samir
Full Member
Posts: 120
POIS victim since 1988
Re: Progress report re: POIS study
« Reply #2 on: Today at 07:32:03 AM »
It has been quite a while that I have checked-in here at POIS center, but am very, very glad to hear this study is underway. POIS has basically run my life in the last two years and I was ready to give up. Thank you for the hope.
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lith65
Newbie
Posts: 15
Re: Progress report re: POIS study
« Reply #3 on: Today at 08:24:56 AM »
I'm so happy this is being done. Hopefully, we'll get to the bottom of POIS and figure out WHY we have it. More importantly, how we can cure it.
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Daveman
Administrator
Hero Member
Posts: 1551
Re: Progress report re: POIS study
« Reply #4 on: Today at 08:51:38 AM »
Hi all,
Sorry that I have been so "out of touch"! However I have been there in the background, especially following up with Dr. Komisaruk and in regular communication with Demo and Stef. I have had problems answering a few PMs, with some sort of technical error, that I haven't been able to sort out.
I am starting a new and rather complex business, and am now working 12 hrs. per day, 7 days per week. It's all I can do to delete spammers. BTW, if anyone sees this garbage, please PM me with the info. (press the report to moderator button).
Very exciting with the testing program development. As Stef says, there is a lot of red tape and it all has to do with making sure that 1) the testing is safe and ethical, 2) that methods are congruent with propar medical practices etc. This all helps to assure that the best possible information can be rescued from the testing "even if the results are not completely congruent with the hypothesis.
It has been evident, during Demos visit that Dr. Komisaruk and team have not been sitting on their hynies while we wait. you don't put a testing program together without making sure all your ducks are in a row. For the most part, the IRB revision, as I understand it, has more to do with your protection, and assuring precise and correct procedures for following through with a testing program. But the medical team is responsible for making sure that the procedures produce something of value for our cause. They align their specialty with what they learn about POIS. This forum and your input has helped a great deal to align the reality of POIS to the procedures that they wish to employ. Of course they are very well aware of all other POIS studies.
Of course they start with a supposition, but it is evident that they are considering as well, that even if the tests don't prove the hypothesis, that there should be information produced that will at least characterize POIS in a scientific and recognizable fashion.
That is, that at the very least, we should come out of this with something that helps show that we are not imagining this, and something that other doctors will have to appreciate.
All that said, I have to admit that I was not super enthiused about the concept, of the vagal nerving having much to do with the POIS cause. We each have our own feel for what is happening in our bodies, and certain "theories" ring truer than others. In the end there are so many different things that can cause the same symptoms, and and so many different syndromes that seem very simlar to POIS with differing root causes that it is next to impossible just based on how we feel (and several hours on internet) to know what is really going on.
I didn't see a relation for instance between the "gutural influence" of the vagus nerve and cognitive effects. But as I experience my POIS with the "vagal perspective", and see and understand more about the vagus nerve, it has become much more evident. The vagus nerve is a cranial nerve, no less!! I personally have seen how stimulation of this nerve has steadied my heart rythms for instance. I tend to have arythmias, especially during POIS (hmmm one big indicator as I understand it for vagal influence). Sometimes when these arythmias become a "bother", I massage the carotid area, near the two arteries on either side of the throat (where the vagus nerve passes), and the arythmias calm and stop, almost instantly. But the vagal nerve has a much farther reaching domain. and if I understand correctly, Dr. Komisaruk has identified regions of influence of this nerve that hadn't earlier been discovered. They may correct me if I am wrong. With fMRI, we will be able to see, changes in the brain associated to vagal effects.
In any case, whether the vagus nerve is central or not, we don't know... that is the reason for the research, however the suspicion is there and coming from someone who has a better feel than most. If it is not central, it is certainly influenced, I have no doubts about that, and if it is influenced, we should come out of this with reasons why and or how. That should be worth something!
And please, if I am not helping to make you all feel certain about a positive result, it's because only the testing can do that. It wouldn't be fair for me or anyone to tell you that this IS the solution. There does seem to be a lot of medical reasons why we are heading in a good direction though.
I am clarifying one last doubt in the documentation that we will be posting. After this post though, I will make another post with the personal history questionaire, then followed by the informed consent.
Demo has some photos he took while there as well, of the fMRI machine at least.
So work in progress. The forms and documents that we post, are all part of the begining of the program. We look for your input, and information will be processed from here on in.
« Last Edit: Today at 08:59:47 AM by Daveman » Report to moderator 186.10.123.124 (?)
WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!
Daveman
Administrator
Hero Member
Posts: 1551
Re: Progress report re: POIS study
« Reply #5 on: Today at 09:17:51 AM »
If there are any comments let us know.
Here is one page. The other one coming.
Lets revise them first. To actually print them, right click over the image and copy URL. Later view the URL in your browser and print screen.
Sorry it's so complex. The limit for attachments is 195K.
« Last Edit: Today at 09:55:35 AM by Daveman » Report to moderator 186.10.123.124 (?)
WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!
demografx
Administrator
Hero Member
Posts: 1475
Re: Progress report re: POIS study
« Reply #6 on: Today at 09:58:30 AM »
Quote from: Daveman on Today at 09:17:51 AM
If there are any comments let us know.
Here is one page. The other one coming.
Lets revise them first. To actually print them, right click over the image and copy URL. Later view the URL in your browser and print screen.
Sorry it's so complex. The limit for attachments is 195K.
Here is the other...
Demo
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Nearly POIS-free symptomatically, treatment consisting mainly of daily testosterone patches.
Please check out fertility risks carefully with your doctor if you're interested.
30+ years of severe 4-day POIS episodes, married, raised a family, started a business -
Samir
Full Member
Posts: 120
POIS victim since 1988
Re: Progress report re: POIS study
« Reply #7 on: Today at 10:05:52 AM »
I think it will be critical to list any other conditions that are tested and confirmed--diabetes, high blood pressure, etc.
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