POISCENTER
General Category => POIS Research => Topic started by: demografx on June 18, 2015, 05:41:11 PM
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Daveman and I contacted NORD to get a copy of Dr. Komisaruk's first interim report (due ~ 6 months after start of study). It should be understood that these interim reports are extensive and in-depth. NORD's MAC reviews them for scientific information, merit and accuracy before approving them. This report was received at the end of April 2015, and approved by the MAC.
As you can understand, these reports are highly confidential until they are publicly published in a journal. But, NORD includes a request for a brief summary that can be publicly posted.
Here's the public summary for the first interim report. It's written in general terms which is to be expected:
"The IRB applications authorizing our study have been approved, the POIS questionnaire characterizing relevant medical history and symptomatology has been developed, site-tested, and expanded, and will now, upon IRB approval, be distributed to the POIS forum for more extensive response and analysis.
POIS sufferers have been contacted, interviewed, and local POIS persons will be the first to participate in the physiological interventions. The necessary equipment has been obtained, the physiological measurement methods have been developed and are functioning properly, and the necessary fMRI procedures and analysis methods have been developed and are ready to be deployed."
The NORD research grant administrator additionally advised --
"The next report is due on October 25, 2015. The PI has also been granted a no cost extension for a year due to some delays round receiving IRB approval for the study."
Daveman and I will request from NORD the next interim report, due at the end of October 2015.
Demo & Daveman
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Thank you demografx, daveman, and bluesbrother for helping make this study a reality
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Daveman and I contacted NORD to get a copy of Dr. Komisaruk's first interim report (due ~ 6 months after start of study). It should be understood that these interim reports are extensive and in-depth. NORD's MAC reviews them for scientific information, merit and accuracy before approving them. This report was received at the end of April 2015, and approved by the MAC.
As you can understand, these reports are highly confidential until they are publicly published in a journal. But, NORD includes a request for a brief summary that can be publicly posted.
Here's the public summary for the first interim report. It's written in general terms which is to be expected:
"The IRB applications authorizing our study have been approved, the POIS questionnaire characterizing relevant medical history and symptomatology has been developed, site-tested, and expanded, and will now, upon IRB approval, be distributed to the POIS forum for more extensive response and analysis.
POIS sufferers have been contacted, interviewed, and local POIS persons will be the first to participate in the physiological interventions. The necessary equipment has been obtained, the physiological measurement methods have been developed and are functioning properly, and the necessary fMRI procedures and analysis methods have been developed and are ready to be deployed."
The NORD research grant administrator additionally advised --
"The next report is due on October 25, 2015. The PI has also been granted a no cost extension for a year due to some delays round receiving IRB approval for the study."
Daveman and I will request from NORD the next interim report, due at the end of October 2015.
Demo & Daveman
Demo & Daveman
you re the best !
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Thanks Guys
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Thank you very much
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Daveman and I contacted NORD to get a copy of Dr. Komisaruk's first interim report (due ~ 6 months after start of study). It should be understood that these interim reports are extensive and in-depth. NORD's MAC reviews them for scientific information, merit and accuracy before approving them. This report was received at the end of April 2015, and approved by the MAC.
As you can understand, these reports are highly confidential until they are publicly published in a journal. But, NORD includes a request for a brief summary that can be publicly posted.
Here's the public summary for the first interim report. It's written in general terms which is to be expected:
"The IRB applications authorizing our study have been approved, the POIS questionnaire characterizing relevant medical history and symptomatology has been developed, site-tested, and expanded, and will now, upon IRB approval, be distributed to the POIS forum for more extensive response and analysis.
POIS sufferers have been contacted, interviewed, and local POIS persons will be the first to participate in the physiological interventions. The necessary equipment has been obtained, the physiological measurement methods have been developed and are functioning properly, and the necessary fMRI procedures and analysis methods have been developed and are ready to be deployed."
The NORD research grant administrator additionally advised --
"The next report is due on October 25, 2015. The PI has also been granted a no cost extension for a year due to some delays round receiving IRB approval for the study."
Daveman and I will request from NORD the next interim report, due at the end of October 2015.
Demo & Daveman
If the Oct report is only an interim one can you advise when the study is due to finish?
Thanks - FB
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FB, We've asked NORD and will let the forum know as soon as we hear back.
Demo, Daveman
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Thank you very much Demo and Daveman for having this level of communication with the medical research team!
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<mod edit>
FB, We've asked NORD and will let the forum know as soon as we hear back.
We've asked for an estimate for date of completion.
The good thing is that the complex IRB adjustments are pretty much resolved.
Demo, Daveman
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Thank you very much Demo and Daveman for having this level of communication with the medical research team!
You're welcome Habibou!
:)
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Hi All,
Delays in the start of a clinical study due to IRB adjustments are entirely routine and occur frequently.
The hassle with IRB committee reviews is that they usually only take place once/month. So for example, if a question is raised at a meeting in January, the researcher's response is reviewed at the February meeting. As you can imagine, a final committee approval can drag on for several months until everything has been clarified and approved.
A clinical study can't go forward without complete IRB committee approval. There can be no lingering questions, no unresolved issues. Thus, all adjustments that were required (or recommended by Dr. K.) for your POIS study have been made. All issues have been 100% resolved.
Stef
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Stef, G-Man, Outsider, Colm, Pianist, FB, Habibou:
THANKS FOR YOUR EXTRA SUPPORT!
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This is welcome information. Thanks for sharing!
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Stef, G-Man, Outsider, Colm, Pianist, FB, Habibou:
THANKS FOR YOUR EXTRA SUPPORT!
and Nightingale !
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[From NORD]..."The next report is due on October 25, 2015. The PI has also been granted a no cost extension for a year
due to some delays round receiving IRB approval for the study."...
PI = Principal Investigator (Dr. Komisaruk/Rutgers)
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...If I'm not mistaken, soon we can probably expect to get some feedback (basic report) from NORD on or after 25th of October....this was mentioned in earlier post. I'm sure one of the moderators can probably confirm my post to you.
That's correct, less_fogged. An interim progress report from Dr. K. is due around the end of October (this month!). NORD will send demo and Daveman a paragraph (or a few paragraphs) that Dr. K will write specifically for posting here.
Stef
Thanks, Stef!
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Hi Daveman, Demo and Stef,
Any news about the public portion of the October 2015 interim progress report ?
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Hi Daveman, Demo and Stef,
Any news about the public portion of the October 2015 interim progress report ?
Hi Quantum and All,
Demo has been keeping up with this. Unfortunately, he's been side-tracked by some personal issues, so I'm answering for him (even though he hasn't asked me to).
Dr. Komisaruk was contacted by NORD (~3 weeks ago) for the interim report. NORD advised demo that they expect to receive it "soon."
A few-weeks delay of a report by a researcher is typical and should not be viewed negatively. Often, a study is at a point where specific results are pending, and the PI sometimes wants to wait for those results before submitting the report.
Once the report gets to NORD, it then needs to be reviewed and approved by NORD's MAC. That can take another week.
The bottom line is that demo and NORD are in touch about the report. The minute he (and Daveman) receive it, one of them will post it.
Stef
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Thank you very much Stephanie for these detailed information !
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Thanks for the updates. Look forward to hearing the news !
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Hi Stef,
Do you think it will possible for us to get the report before the new year?
Thanks FB
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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
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Thanks, Stef!
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(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
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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"
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This is great news demografx! Thanks
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Thanks Prancer, and everyone else, for your patience!
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Thanks for keeping us up to date demo!
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You're welcome, Scary sheep!
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Any updates now that its end of week?
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Any updates now that its end of week?
"...end of next week", per Jacqui/NORD. As posted previous page.
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Hoping for some good news before year end holiday !
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Really looking forward to this.
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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
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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!
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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.
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I remain open and optimistic.
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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
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(http://i858.photobucket.com/albums/ab143/demografx/DF9A2E30-62D4-432D-AB93-6C8E5057E6E8.jpg)Stef!
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You're welcome, demo!
Stef
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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"
Yes, as I understand it, they "control" public releases, because at this point it is impossible to be able to have come to a definitve evaluation. They may have very good probabilities of "a given outcome" or very little information related to what they expected. In both cases they have to dig deeper an try to be very definitive.
We don't want anything "half baked", and of course nor do they. There's probably been too much of this with POIS.
So they can't raise OR lower expectations until they have something real.
I'm sure that whatever the outcome, we'll have something in our hands (that doesn't give us POIS :) :), something that is real.... a solution or at least a real starting point.
The wait is tough. But its all part of the process. Sigh
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Double sigh, Daveman!
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Hello,
Weren't you expecting something for the end of last week ?
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Hello,
Weren't you expecting something for the end of last week ?
Good news: the report's been received.
Now it just needs approval to release.
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hmmmm....
waiting for that.
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Hi All,
Demo and Daveman just received the public portion of Dr. Komisaruk's interim report from NORD. Here it is --
"A preliminary interpretation of our current data is that POIS symptoms are accompanied by a lowered heart rate and heart rate variability (HRV), and that vagal stimulation may produce a beneficial effect on POIS symptoms (increased heart rate and HRV) as a 're-bound' from the vagal stimulation. These are very preliminary findings and continued research with additional participants is underway, to assess the reliability of these findings."
Stef
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(http://i858.photobucket.com/albums/ab143/demografx/DF9A2E30-62D4-432D-AB93-6C8E5057E6E8.jpg)Stef!
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Hi All,
Demo and Daveman just received the public portion of Dr. Komisaruk's interim report from NORD. Here it is --
"A preliminary interpretation of our current data is that POIS symptoms are accompanied by a lowered heart rate and heart rate variability (HRV), and that vagal stimulation may produce a beneficial effect on POIS symptoms (increased heart rate and HRV) as a 're-bound' from the vagal stimulation. These are very preliminary findings and continued research with additional participants is underway, to assess the reliability of these findings."
Stef
Thanks Stef for posting the report.
Very intriguing results. The vagus nerve effect on the heart is to slow it down, so, what I understand is, you slow down the heart even more with vagus nerve stimulation, in order to provoke a "rebound".... well, that is how i make sense of what is said in the report. Am I the only one to hear it that way?
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Very intriguing results. The vagus nerve effect on the heart is to slow it down, so, what I understand is, you slow down the heart even more with vagus nerve stimulation, in order to provoke a "rebound".... well, that is how i make sense of what is said in the report. Am I the only one to hear it that way?
Quantum, that's the way I interpreted it.
I find it very interesting that he's found decreased heart rate variability (HRV) in the patients he's screened.
Stef
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I find it very interesting that he's found decreased heart rate variability (HRV) in the patients he's screened.
Stef
Back when I was using my device from the Heartmath Institute, a biofeedback device that helps in increasing HRV, it wasn't long before I saw that high HRV means "feeling good", and 'in the zone". I do not remember having using it during POIS acute phase, to measure my HRV, but when in POIS, you feel so "zoned out" that it makes sense that your HRV has gone down.
Meditation, relaxation, binaural beats, are good to help raise my HRV ( that, I have measured with my Freeze-Framer)... no surprise that those tools has been part of my overall approach in reducing the severity and duration of my POIS.
I am looking forward for more information from what they have found, and how they think vagus nerve stimulation works against POIS symptoms, and how good it works.
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I wonder if my 5-way cardiac bypass 5 years ago is somehow related?
You mean your POIS got less severe after your bypasses have been done, Demo?
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Hello senior members....its good know about report . forgive me if i may have missed some info, as i wish to ask did Dr k has involved men not suffering from pois in his research ? To compare n establish something abnormal in us (vagus nerve thing)
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I wonder if my 5-way cardiac bypass 5 years ago is somehow related?
Yes, I think so ! I remember I wrote a post and I said it's possible that Poisers will have cardiac problems with age. I think we have some poisers in this case.
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Now, the study didn't give the cause of the cause but an intermediate cause.
Now, we have a point to connect some of our "remedies" :
niacine <=> heart
garlic <=> heart
taurine (http://www.jbiomedsci.com/content/17/S1/S2) <=> heart
.... etc
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Meditation, relaxation, binaural beats, are good to help raise my HRV ( that, I have measured with my Freeze-Framer)... no surprise that those tools has been part of my overall approach in reducing the severity and duration of my POIS.
To raise ? or to decrease ?
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So if I understand this correct, the theory is that the orgasm slows down the heartrate and because of that the body don`t get enough oxygen and because of that you feel tired. I know that that my heartrate doesn?t slow down. So in this study how much did the heart slow down and for how many Days?
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Hello senior members....its good know about report . forgive me if i may have missed some info, as i wish to ask did Dr k has involved men not suffering from pois in his research ? To compare n establish something abnormal in us (vagus nerve thing)
Hi username, and welcome to the forum!
The answer to your question is yes -- Dr. K is including "control subjects" (men without POIS) in this study.
Stef
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Meditation, relaxation, binaural beats, are good to help raise my HRV ( that, I have measured with my Freeze-Framer)... no surprise that those tools has been part of my overall approach in reducing the severity and duration of my POIS.
To raise ? or to decrease ?
Hi b_jim,
Short answer: what you want is to raise your HRV. Following are more details.
Heart rate variability (HRV) is a very interesting measurement. It is different form the heart rate. HRV is the subtle variation in your heart rhythm, cyclically, over a short period of time, like during a breathing cycle. One of the main cause of HRV is what is called the respiratory sinus arrhythmia. In lay terms, that means that your heart rate slightly speeds up during inspiration, and slightly slows down during expiration. That's because when you inhale, it lowers the vagal tone influence on the heart, and when you exhale, the vagal tone influence on the heart is heightened, so the heart slows down a bit.
A high HRV means you have pronounced speeding up and slowing down of your heart rhythm. A lower HRV means you heart keeps more or less the same rhythm, not really as mechanical as a clock, but have less variation in rate than expected values.
A reduced HRV is associated with heart problem, with depression, with PTSD, high anxiety, and other problems. It even has been shown to be a predictor of mortality after myocardial infarction.
A high HRV is associated with peak performance, with feeling in the zone, with optimal vagal tone, and with balance between sympathetic and parasympathetic systems. Here is how the Hearthmath institute puts it: "Numerous studies show HRV is a key indicator of physiological resiliency and behavioral flexibility, and can reflect an ability to adapt effectively to stress and environmental demands." ( https://www.heartmath.org/articles-of-the-heart/the-math-of-heartmath/heart-rate-variability/ ).
So, to answer your question, what is desirable is to raise Heart Rate Variability ( HRV ).
The fact that in POIS acute phase, HRV is lowered, it clearly shows that the balance between vagal tone and sympathetic tone is disrupted. We all, POIS sufferers, know for a fact that during POIS acute phase, we are litterally out of whack, don't we?. This lower HRV shows it in a measurable way, the Rutgers study tells us.
For anyone interested in more in-depth information about HRV, see https://en.wikipedia.org/wiki/Heart_rate_variability and https://www.heartmath.org/articles-of-the-heart/the-math-of-heartmath/heart-rate-variability/ .
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Im not 100% agree with you Quantum. But maybe we should open another topic because I don't want to polluate this one.
I have opened a new topic to talk about heart and HRV :
http://poiscenter.com/forums/index.php?topic=2179.0
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Does cardio increase the HRV? For some reason cardio kinda lowered my pois symptoms, when I remember it right.
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Hi All,
Demo and Daveman just received the public portion of Dr. Komisaruk's interim report from NORD. Here it is --
"A preliminary interpretation of our current data is that POIS symptoms are accompanied by a lowered heart rate and heart rate variability (HRV), and that vagal stimulation may produce a beneficial effect on POIS symptoms (increased heart rate and HRV) as a 're-bound' from the vagal stimulation. These are very preliminary findings and continued research with additional participants is underway, to assess the reliability of these findings."
Stef
Thanks Stef, dr. Komisaruk, dr. Nan Wise and all involved..........Nightingale
Another small step further and almost Christmas again
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So if I understand this correct, the theory is that the orgasm slows down the heartrate and because of that the body don`t get enough oxygen and because of that you feel tired. I know that that my heartrate doesn?t slow down. So in this study how much did the heart slow down and for how many Days?
Hi akilles,
My understanding from Dr. K.'s public statement is that in the small group of POIS participants studied to date, the symptoms of POIS are accompanied by a decreased heart rate and a decreased heart rate variability (HRV). Keep in mind, he's comparing the heart rates and HRVs of men with and without POIS...and so far, it seems he's found a difference.
You may or may not not notice the decreased heart rate while you're experiencing POIS symptoms, but I don't think one can measure his/her HRV. It's a value that's measured via a specialized monitor.
Perhaps more importantly, the vagus nerve is directly involved in the release of certain neurotransmitters, so the heart rate and HRV may be measurable signs that indicate abnormal neurotransmitter release during POIS. (That's only my interpretation.)
There's much more to this that Dr. Komisaruk won't be addressing at this point in the study (like specific heart rate).
Stef
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Im not 100% agree with you Quantum. But maybe we should open another topic because I don't want to polluate this one.
Hi b_jim,
I think it could be a good idea to start a thread about heart rate variability (HRV). Since it will be used in the study results, it will be a good thing for everyone to know what it means, and be able to better understand the study results when they will come out.
I will be very interested in further discussing with you, and everyone else, about HRV. It is not a simple and straighforward concept, and it is not all black-and-white, in particular if you add the concept of frequency bands ( for example, in PTSD, the high frequencies shows a decreased HRV, and the low frequencies shows a higher HRV).
Maybe, by the time we will have the complete results of the study, we will have become HRV experts !
P.S: I have just seen you have started a thread on HRV, thanks, so the HRV discussion will move there.
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I wonder if my 5-way cardiac bypass 5 years ago is somehow related?
You mean your POIS got less severe after your bypasses have been done, Demo?
Thanks, Quantum, I was wondering if my heart problems - that led to this surgery - were somehow related to my lifetime of severe POIS. Just speculating.
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Does cardio increase the HRV? For some reason cardio kinda lowered my pois symptoms, when I remember it right.
Hi Staypositive,
Yes, exercise training increase HRV ( Here's the first study I have fund after a quick search for one : http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2903986/ )
I have started regular exercise two times a week , for 4 years now, and it has been beneficial for my overall health, but also in reducing the severity and duration of my POIS.
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You may or may not not notice the decreased heart rate while you're experiencing POIS symptoms, but I don't think one can measure his/her HRV. It's a value that's measured via a specialized monitor.
Stef
Hi Stef,
Just to let you and everybody else know, there are now many products and devices that are available in order to monitor your HRV, thanks to its popularity in the fitness world, in particular ( higher HRV is linked to peak performance). In this era of smartphones, there are many apps available for this purpose, some being free, some other paid for ( for lists of both free and paid apps, see https://en.wikipedia.org/wiki/Heart_rate_variability#Consumer_Apps_For_HRV ).
I don't know much about the free apps. In the paid for apps, I think the most popular are Ithlete, Bioforce and Sweetbeats. I personally have experience only with the Heartmath products, and I think they are excellent products, because of their pioneering work on HRV, and their ever on-going research on HRV ( but unfortunately, their phone apps are only iOS for now, no Android apps).
Take note that most smartphone apps need a heart monitor belt that you plug into your mobile for data input ( compatibility have to be checked between particular belts and specific apps). However, I have read that some free apps can work with putting your fingertip on the phone's camera, who detect small color change ( I don't know how well that works).
There are also standalone small devices, like the emWave2 of HeartMath, and there are also many desktop computer products ( like the one I bought in 2004).
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I wonder if my 5-way cardiac bypass 5 years ago is somehow related?
Yes, I think so ! I remember I wrote a post and I said it's possible that Poisers will have cardiac problems with age. I think we have some poisers in this case.
Thanks, b_jim!
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Hello friends ....... i was very less active on forum, but i am very acute sufferer of POIS n paying very very high price for it... i am from india(have resident status of canada) and recent i got admitted in one of India's premier health institute to investigate about POIS certainly as we all have gone through one sided convincing communication to doctors. they said nothing like POIS exists ....n told you are suffering from DHAT syndrome. so thats the story . i am very happy to see Dr K research ..... as our all life is staked with outcomes of research ..... hope we get a solution... years back i noticed that when i was working out heavyly with takinig supllements n multivits my symptoms reduced i also took fish oil caps. but at that time i could not establish that which thing was reducing my symptoms...... ....... one thing i wish tell is now i have started taking cod liver oil caps for general health....and i have noticed a change in POIS symptoms and main thing is i am not taking it on demand for POIS (like niacin). i know there is now the focus is on vagus nerve and HRV ....but i want you guys to try it...... to establish any benefit from it ...as it has anti inflammatory effect n its good for heart too...........thanks
http://thelowhistaminechef.com/the-vagus-nerve-inflammation-connection/
http://www.wellnessresources.com/health_topics/cardiovascular-health/omega3.php
http://www.medscape.com/viewarticle/789938
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3082733/
http://selfhacked.com/2015/07/30/28-ways-to-stimulate-your-vagus-nerve-and-all-you-need-to-know-about-it/
http://welltellme.com/discuss/index.php?topic=19042.30
http://coolinginflammation.blogspot.in/2009/09/vagus-nerve-controls-gut-inflammation.html
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Another relevent
http://drsircus.com/medicine/vagus-nerve-inflammation-heart-rate-variability/
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Hello friends ....... i was very less active on forum, but i am very acute sufferer of POIS n paying very very high price for it... i am from india(have resident status of canada) and recent i got admitted in one of India's premier health institute to investigate about POIS certainly as we all have gone through one sided convincing communication to doctors. they said nothing like POIS exists ....n told you are suffering from DHAT syndrome. so thats the story . i am very happy to see Dr K research ..... as our all life is staked with outcomes of research ..... hope we get a solution... years back i noticed that when i was working out heavyly with takinig supllements n multivits my symptoms reduced i also took fish oil caps. but at that time i could not establish that which thing was reducing my symptoms...... ....... one thing i wish tell is now i have started taking cod liver oil caps for general health....and i have noticed a change in POIS symptoms and main thing is i am not taking it on demand for POIS (like niacin). i know there is now the focus is on vagus nerve and HRV ....but i want you guys to try it...... to establish any benefit from it ...as it has anti inflammatory effect n its good for heart too...........thanks
http://thelowhistaminechef.com/the-vagus-nerve-inflammation-connection/
http://www.wellnessresources.com/health_topics/cardiovascular-health/omega3.php
http://www.medscape.com/viewarticle/789938
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3082733/
http://selfhacked.com/2015/07/30/28-ways-to-stimulate-your-vagus-nerve-and-all-you-need-to-know-about-it/
http://welltellme.com/discuss/index.php?topic=19042.30
http://coolinginflammation.blogspot.in/2009/09/vagus-nerve-controls-gut-inflammation.html
THANKS USERNAME!
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Hello friends ....... i was very less active on forum, but i am very acute sufferer of POIS n paying very very high price for it... i am from india(have resident status of canada) and recent i got admitted in one of India's premier health institute to investigate about POIS certainly as we all have gone through one sided convincing communication to doctors. they said nothing like POIS exists ....n told you are suffering from DHAT syndrome. so thats the story . i am very happy to see Dr K research ..... as our all life is staked with outcomes of research ..... hope we get a solution... years back i noticed that when i was working out heavyly with takinig supllements n multivits my symptoms reduced i also took fish oil caps. but at that time i could not establish that which thing was reducing my symptoms...... ....... one thing i wish tell is now i have started taking cod liver oil caps for general health....and i have noticed a change in POIS symptoms and main thing is i am not taking it on demand for POIS (like niacin). i know there is now the focus is on vagus nerve and HRV ....but i want you guys to try it...... to establish any benefit from it ...as it has anti inflammatory effect n its good for heart too...........thanks
(1) http://thelowhistaminechef.com/the-vagus-nerve-inflammation-connection/
(2) http://www.wellnessresources.com/health_topics/cardiovascular-health/omega3.php
(3) http://www.medscape.com/viewarticle/789938
(4) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3082733/
(5) http://selfhacked.com/2015/07/30/28-ways-to-stimulate-your-vagus-nerve-and-all-you-need-to-know-about-it/
(6) http://welltellme.com/discuss/index.php?topic=19042.30
(7) http://coolinginflammation.blogspot.in/2009/09/vagus-nerve-controls-gut-inflammation.html
Thanks for the links, username. They help in the understanding of HRV ( heart rate variability), vagal nerve stimulation, inflammation, and how they all relate.
I have numberer, in your post above, the links you have given us, in order to facilitate the following comments:
(1) Many good scientific references about vagal stimulation and how it is link to inflammation, and at the end, good suggestions about natural ways to stimulate the vagal nerve: meditation, yoga, healthy diet ( things that, in my case, have been shown beneficial in the relief of POIS ). She adds tricks like coughing, contracting the defecation muscles, and so on.
(2) Omega-3 ( in particular,, the DHA in them) supports Heart Rate Variability ( HRV ) and improve vagal nerve tone. (If the Rutgers study hypothesis are confirmed, then Omega-3 are definitively good for POIS. That is my personal experience, though. And not only for the DHA/cardio-vascular benefits, but for the EPA/emotional benefits as well. A winner for me)
(3) very interesting study, showing omega-3 intake is beneficial for HRV, by "augmenting vagal tone, modulating adrenergic-mediated baroreceptor activity, and improving sinoatrial node function as reflected by reductions in erratic sinus firing."
(4) another study on the benefits of vagal nerve stimulation for systemic inflammation
(5) a very extensive list of ways to stimulate the vagus nerve ( much longer than ref #1). The short introduction at the beginning of the list may help many members in understanding why the Rutgers study involves vagus nerve stimulation, a growing field of research, currently.
Thanks for this information, username. And I am happy for you that you see some improvement with cod liver oil. I also do benefit form omega-3, but take them from standardized fish oil supplements, with measured DHA and EPA contents, in order to know I much I take of these, in term of mg.
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I am still wondering about the findings talked about in the interim report, about the effectiveness of vagal nerve stimulation (VNS) against POIS. A lower heart rate ( as found by the team in POISers) is usually caused by a stronger vagal tone, and stimulating the vagal nerve ( VNS) shouldn't be of help, and making the heart rate slower still. My vision of this must be too simplistic, obviously.
The Rutgers team talks about a "re-bound", and POIS relief from VNS. I think that there may be more to this than just the effect on the heart rate and HRV. The vagus nerve is a very complex nerve with many branches, involved in many major organ. Maybe it is the overall, total effect of the VNS, by a cascade of feedbacks and control mechanisms, that brings about POIS relief. Then, the exact amount of VNS, and how it is applied in time, will be important. Maybe too much or too little VNS can make things worst ?
More will be known when further info will be released by the Rutgers team. It is even possible that the study brings clinical evidence of relief through VNS, but has no clue about the exact mechanism by which this relief occurs.... Even in the case that no specifics will be known, a basic treatment will be recognized ( for 100% POISers? It would be the first! ), and research have to start somewhere - one things leads to another. And it is possible the the findings will be much better than that.
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Hi Username,
Thanks for posting this fine information including the Vagus Nerve awareness link, a very comprehensive posting. Very educational indeed http://selfhacked.com/2015/07/30/28-ways-to-stimulate-your-vagus-nerve-and-all-you-need-to-know-about-it/
Also, T U Quantum for adding the outline of Username's shared content, to encourage some further reading that might inform some healthcare choices for the guys.
Your mention of cod liver oil. Be careful. As with all choices, do pay attention please to recommended daily doses. When at my worst of pois in my early 20's , was overdosing on cod liver oil mistakenly believing more and more would make me healthy. It didn't on its own of course. Was sadly taking close to two bottles of CLO about every week (pre-internet information). Made me very ill, but the desperation of trying this to cure (the dermatitis part of) POIS made my thinking flawed.
All in moderation now and a 3 year nutritional/supplementation approach, along with lifestyle, (a carefully managed sex life, work permitting) and also exercise (gym/running) are helping with gradually promoting immune strength, evolving wellness and health for me personally. The POIS information related to Vagal could also "potentially" be another key chain in the link that brings us all more health and stability here.
Facing into my most healthy year end holiday in decades. Not cured, but starting to gradually believe !
Good wishes to you all. and thanks for all the shared information here.
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Hi Username,
Thanks for posting this fine information including the Vagus Nerve awareness link, a very comprehensive posting. Very educational indeed http://selfhacked.com/2015/07/30/28-ways-to-stimulate-your-vagus-nerve-and-all-you-need-to-know-about-it/
Also, T U Quantum for adding the outline of Username's shared content, to encourage some further reading that might inform some healthcare choices for the guys.
Your mention of cod liver oil. Be careful. As with all choices, do pay attention please to recommended daily doses. When at my worst of pois in my early 20's , I was overdosing on cod liver oil mistakenly believing more and more would make me healthy. It didn't on its own of course. Was sadly taking two large bottles of CLO a week. Made me very ill, but the desperation of trying this to cure (the dermatitis part) POIS made my thinking flawed.
All in moderation now and a 3 year nutritional/supplementation approach, along with lifestyle, (a carefully managed sex life, work permitting) and also exercise (gym/running) are helping with gradually promoting immune strength, evolving wellness and health for me personally. The POIS information related to Vagal could also "potentially" be another key chain in the link that brings us all more health and stability here.
Facing into my most healthy year end holiday in decades. Not cured, but starting to gradually believe !
Good wishes to you all. and thanks for all the shared information here.
Thank you buddy for info .... i still doing trials on cod liver oil , n i want others too do it , to see any benefit...........and yes in excess CLO is bad ...its general usage should not exceed 3 g a day
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Can't think of a better way to kick off this Christmas/holiday season than hearing all this new info about the research findings! I know it's not set in stone yet, but it's very encouraging to hear.
Thank you to Stef and everyone involved in the research itself and the relay of the findings. The idea of abnormal neurotransmitter release (and the relation to the vagus nerve) that Stef mentioned is pretty interesting to hear. It's still very, very early, but those preliminary results are still really promising, and for sure a GREAT way to close out 2015!
Looking forward to learning more in the upcoming weeks & months. Happy Holidays and New Year you guys! Don't party too hard. Nvm, party as hard as you want!
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Can't think of a better way to kick off this Christmas/holiday season than hearing all this new info about the research findings! I know it's not set in stone yet, but it's very encouraging to hear.
Thank you to Stef and everyone involved in the research itself and the relay of the findings. The idea of abnormal neurotransmitter release (and the relation to the vagus nerve) that Stef mentioned is pretty interesting to hear. It's still very, very early, but those preliminary results are still really promising, and for sure a GREAT way to close out 2015!
Looking forward to learning more in the upcoming weeks & months. Happy Holidays and New Year you guys! Don't party too hard. Nvm, party as hard as you want!
(http://i858.photobucket.com/albums/ab143/demografx/F1192B54-0438-4C33-9EFF-6F6C04E231B4.jpg)
...party as hard as you want!
(http://i858.photobucket.com/albums/ab143/demografx/83192406-97B3-4815-B584-95C90D46E2F5.gif)
...but be careful with POIS !!
(http://i858.photobucket.com/albums/ab143/demografx/0E31E3FB-1C69-4A88-BD69-556E724979AD.gif)
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Can't think of a better way to kick off this Christmas/holiday season than hearing all this new info about the research findings! I know it's not set in stone yet, but it's very encouraging to hear.
Thank you to Stef and everyone involved in the research itself and the relay of the findings. The idea of abnormal neurotransmitter release (and the relation to the vagus nerve) that Stef mentioned is pretty interesting to hear. It's still very, very early, but those preliminary results are still really promising, and for sure a GREAT way to close out 2015!
Looking forward to learning more in the upcoming weeks & months. Happy Holidays and New Year you guys! Don't party too hard. Nvm, party as hard as you want!
Hi, Prancer --
Thank you for all of your positive, upbeat, and always supportive posts!
I agree with you. The research sounds very encouraging.
(Belated) Happy Hanukah & Happy Festivus, Merry Christmas and Happy/Healthy New year to all of you!
Stef
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You may or may not not notice the decreased heart rate while you're experiencing POIS symptoms, but I don't think one can measure his/her HRV. It's a value that's measured via a specialized monitor.
Some time ago I had checked whether any of the fitness bands currently on the market could be used to measure heart rate variability. In principle, all devices which measure heart rate continuously, should collect the necessary data to compute heart rate variability. The problem is that one does not get access to the raw data (the timing between heart beats over time) but only to aggregate statistics (heart rate per minute) via the companies' apps or heart rate monitors. This is unfortunate. Another question is of course whether the devices are precise enough in their measurement of heart rates. In general, devices with breast straps are more precise than devices which measure heart rate at one's wrist. When researching heart rate monitors, I found a startup which is developing an open source fitness band which will allow one to access the raw data. If HRV variability turns out to be an important metric to monitor, that could be a potential solution in the future. You can check it out here: https://www.indiegogo.com/projects/angel-the-first-open-sensor-for-health-and-fitness#/
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You may or may not not notice the decreased heart rate while you're experiencing POIS symptoms, but I don't think one can measure his/her HRV. It's a value that's measured via a specialized monitor.
Stef
Hi Stef,
Just to let you and everybody else know, there are now many products and devices that are available in order to monitor your HRV, thanks to its popularity in the fitness world, in particular ( higher HRV is linked to peak performance). In this era of smartphones, there are many apps available for this purpose, some being free, some other paid for ( for lists of both free and paid apps, see https://en.wikipedia.org/wiki/Heart_rate_variability#Consumer_Apps_For_HRV ).
I don't know much about the free apps. In the paid for apps, I think the most popular are Ithlete, Bioforce and Sweetbeats. I personally have experience only with the Heartmath products, and I think they are excellent products, because of their pioneering work on HRV, and their ever on-going research on HRV ( but unfortunately, their phone apps are only iOS for now, no Android apps).
Take note that most smartphone apps need a heart monitor belt that you plug into your mobile for data input ( compatibility have to be checked between particular belts and specific apps). However, I have read that some free apps can work with putting your fingertip on the phone's camera, who detect small color change ( I don't know how well that works).
There are also standalone small devices, like the emWave2 of HeartMath, and there are also many desktop computer products ( like the one I bought in 2004).
I somehow had missed your post. Technology moves fast - indeed there are now apps which can be combined with breast straps. The Wikipedia article you mention is a good starting point.
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Can't think of a better way to kick off this Christmas/holiday season than hearing all this new info about the research findings! I know it's not set in stone yet, but it's very encouraging to hear.
Thank you to Stef and everyone involved in the research itself and the relay of the findings. The idea of abnormal neurotransmitter release (and the relation to the vagus nerve) that Stef mentioned is pretty interesting to hear. It's still very, very early, but those preliminary results are still really promising, and for sure a GREAT way to close out 2015!
Looking forward to learning more in the upcoming weeks & months. Happy Holidays and New Year you guys! Don't party too hard. Nvm, party as hard as you want!
(http://i858.photobucket.com/albums/ab143/demografx/F1192B54-0438-4C33-9EFF-6F6C04E231B4.jpg)
...party as hard as you want!
(http://i858.photobucket.com/albums/ab143/demografx/83192406-97B3-4815-B584-95C90D46E2F5.gif)
...but be careful with POIS !!
(http://i858.photobucket.com/albums/ab143/demografx/0E31E3FB-1C69-4A88-BD69-556E724979AD.gif)
Whoops, Prancer, I almost forgot this PARTY HARD graphic for you! :)
(http://i858.photobucket.com/albums/ab143/demografx/BF20DF0C-F8FF-47ED-834F-1489F7637C73_1.jpg)
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The question is: is it the POIS that causes cardiac arrhythmia Or do we get POIS because of cardiac arrhythmia after an O? It's known that allergies cause cardiac arrhythmia.
I checked my heart rate in a normal situation. It's 80. Normal is 60-80. I didn't check my heart rate after an O. But I think also people without POIS have a different heart rate after an O.
Funny that I saw on the Comedy Show How I met your Mother that a guy gets a heart monitor at home. They followed him whole day and asked what he did at a certain time.
https://en.m.wikipedia.org/wiki/A_Change_of_Heart_(How_I_Met_Your_Mother)
Hi All,
Demo and Daveman just received the public portion of Dr. Komisaruk's interim report from NORD. Here it is --
"A preliminary interpretation of our current data is that POIS symptoms are accompanied by a lowered heart rate and heart rate variability (HRV), and that vagal stimulation may produce a beneficial effect on POIS symptoms (increased heart rate and HRV) as a 're-bound' from the vagal stimulation. These are very preliminary findings and continued research with additional participants is underway, to assess the reliability of these findings."
Stef
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Interesting, Vandemolen. I had cardiac arrhythmia most of my life till my 5-way bypass surgery. Since then the cardiac arrhythmias have stopped. Hard to relate to POIS because I started my POIS treatment years ago. I didn't study the cardiac angle.
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I think Pois causes the arythmia. And after years might cause cardiac problems.
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I think Pois causes the arythmia. And after years might cause cardiac problems.
I think you're right.
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Hi Vandemolen, B_jim and Demo,
The interim report mentions "a lowered heart rate and heart rate variability (HRV)" , but this is different from cardiac arrhythmia. They did not use the term "bradycardia", which is a heart rate below 60 bpm, and is a kind of arrhythmia. From my point of view, they use the measurement of heart rate and HRV only as a way to reflect the changes in vagal tone.
Maybe POIS can cause arrhythmia for certain POIS sufferers, but I do not think that the report makes any statement about that.
In my own case, POIS causes me marked hypotension ( when no prevention used), but no arrhythmia, and no cardiac problems.
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Thanks for your clarifying, Quantum.
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So excited to hear about the Rutgers study! I realize it's all very preliminary, but it's definitely exciting to see some movement. Thanks to the research team, Stef, POIS participants, and NORD for all your work so far! What are next steps in terms of the study? Are there more interim reports coming out? What sort of timeline are we looking at?
The question is: is it the POIS that causes cardiac arrhythmia Or do we get POIS because of cardiac arrhythmia after an O? It's known that allergies cause cardiac arrhythmia.
I checked my heart rate in a normal situation. It's 80. Normal is 60-80. I didn't check my heart rate after an O. But I think also people without POIS have a different heart rate after an O.
Funny that I saw on the Comedy Show How I met your Mother that a guy gets a heart monitor at home. They followed him whole day and asked what he did at a certain time.
https://en.m.wikipedia.org/wiki/A_Change_of_Heart_(How_I_Met_Your_Mother)
Just a real quick note here. It's my understanding (and others have mentioned in the forum) that HRV and heart rate are pretty different measures. So far, the study has only commented on a possible link with HRV. Assuming my understanding is correct, I just want to make sure we don't equate or confuse the two.
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Hi All,
Demo and Daveman just received the public portion of Dr. Komisaruk's interim report from NORD. Here it is --
"A preliminary interpretation of our current data is that POIS symptoms are accompanied by a lowered heart rate and heart rate variability (HRV), and that vagal stimulation may produce a beneficial effect on POIS symptoms (increased heart rate and HRV) as a 're-bound' from the vagal stimulation. These are very preliminary findings and continued research with additional participants is underway, to assess the reliability of these findings."
Stef
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Looks like he does mention heart rate. My mistake! Thanks for the correction G-man.
Hi All,
Demo and Daveman just received the public portion of Dr. Komisaruk's interim report from NORD. Here it is --
"A preliminary interpretation of our current data is that POIS symptoms are accompanied by a lowered heart rate and heart rate variability (HRV), and that vagal stimulation may produce a beneficial effect on POIS symptoms (increased heart rate and HRV) as a 're-bound' from the vagal stimulation. These are very preliminary findings and continued research with additional participants is underway, to assess the reliability of these findings."
Stef
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"So excited to hear about the Rutgers study! I realize it's all very preliminary, but it's definitely exciting to see some movement. Thanks to the research team, Stef, POIS participants, and NORD for all your work so far! What are next steps in terms of the study? Are there more interim reports coming out? What sort of timeline are we looking at?"
Hi, Hoping (and Everyone),
The Rutgers study is a one-year study. There was a several-month delay in starting it due to the IRB Committee having questions, needing clarifications, etc., so NORD's MAC granted Dr. K. a one-year extension. This is why iit all moved at a snail's pace at the beginning.
(IRB delays are expected, because patient safety is paramount and every step has to be entirely understood and approved. Also, iit's lkely that none of the committee members had ever heard of POIS, so there may have been more questions than usual.)
Based on the paragraph provided by Dr. Komisaruk, it sounds like the study is moving full-steam ahead at this point. It has another six months, and should be completed around April or May 2016. The final report is due within 60 days of completion. So, the next (final) report should be received by NORD in June or July at the latest.
Dr. Komisaruk will undoubtedly write a paper with all the details, and it will be published in a reputable mefical journal. You'll all be able to read it, word for word, once it's published. With luck his paper will be accepted and published quickly.
I hope that was helpful!
Best wishes,
Stef
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It was. Thank you, Stef.
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Hi All,
Demo and Daveman just received the public portion of Dr. Komisaruk's interim report from NORD. Here it is --
"A preliminary interpretation of our current data is that POIS symptoms are accompanied by a lowered heart rate and heart rate variability (HRV), and that vagal stimulation may produce a beneficial effect on POIS symptoms (increased heart rate and HRV) as a 're-bound' from the vagal stimulation. These are very preliminary findings and continued research with additional participants is underway, to assess the reliability of these findings."
Stef
Hello Stef, Hi everyone,
Amazing news, isn't it?
I was just wondering what kind of situations could act as "triggers" of Low HRV (Stress, bad sleep, auto-inmune diseases, eating some foods ...), and also which ones act doing the opposite (raising HRV -like stimulating the vagus nerve), in order to relate them to our POIS experiences.
I don't know if this makes sense, so I'm just sharing the idea.
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Happy NEW Year everyone !
Colm
I was just wondering what kind of situations could act as "triggers" of Low HRV (Stress, bad sleep, auto-inmune diseases, eating some foods ...), and also which ones act doing the opposite (raising HRV -like stimulating the vagus nerve), in order to relate them to our POIS experiences.
I don't know if this makes sense, so I'm just sharing the idea.
Hi Observer,
Just a reminder of the interesting and helpful "Vagus Nerve stimulation" document loaded by forum member USERNAME recently
The link is http://selfhacked.com/2015/07/30/28-ways-to-stimulate-your-vagus-nerve-and-all-you-need-to-know-about-it/
Hope this is helpful
All the best,
Colm
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Happy NEW Year everyone !
Colm
I was just wondering what kind of situations could act as "triggers" of Low HRV (Stress, bad sleep, auto-inmune diseases, eating some foods ...), and also which ones act doing the opposite (raising HRV -like stimulating the vagus nerve), in order to relate them to our POIS experiences.
I don't know if this makes sense, so I'm just sharing the idea.
Hi Observer,
Just a reminder of the interesting and helpful "Vagus Nerve stimulation" document loaded by forum member USERNAME recently
The link is http://selfhacked.com/2015/07/30/28-ways-to-stimulate-your-vagus-nerve-and-all-you-need-to-know-about-it/
Hope this is useful and perhaps anyone could comment if they specifically have experience with, would recommend or discourage any of the techniques with regard to the Heart Rate Variability issue, or whether these Vagus Nerve stimulation techniques are best used within or outside a POIS cycle.
Most easy to understand ones in high level form below - feel free to comment
Stimulating Your Vagus Nerve.
1. Meditation
2. Have Positive Social Relationships
3. Breath Deeply and Slowly
4. Probiotics
5. Exercise
6. Cold
7. Massages
8. Fasting
9. Sleep or Lay on Your Right Side
10. Yoga
11. Tai Chi
12. Singing or Chanting
13. Gargling
14. Tongue Depressors
15. Acupuncture
16. Oxytocin
17. Zinc
18. Serotonin
19. Chew Gum: CCK
20. Laughter
21. Coffee Enemas
22. Coughing or Tensing the Stomach Muscles
23. Fish Oil – EPA and DHA
24. Make Sure Your Thyroid Hormones/T3 Are Normal
25. Prayer
Link above for the details.
All the best,
Colm
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(http://i858.photobucket.com/albums/ab143/demografx/847B0408-7520-4217-A558-93CC11E181A5.gif)
|2016|
Have a great 2016, Colm!
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Happy NEW Year everyone !
Colm
I was just wondering what kind of situations could act as "triggers" of Low HRV (Stress, bad sleep, auto-inmune diseases, eating some foods ...), and also which ones act doing the opposite (raising HRV -like stimulating the vagus nerve), in order to relate them to our POIS experiences.
I don't know if this makes sense, so I'm just sharing the idea.
Hi Observer,
Just a reminder of the interesting and helpful "Vagus Nerve stimulation" document loaded by forum member USERNAME recently
The link is http://selfhacked.com/2015/07/30/28-ways-to-stimulate-your-vagus-nerve-and-all-you-need-to-know-about-it/
Hope this is helpful
All the best,
Colm
Happy new year, Colm, demografx and everyone!!
Thanks for sharing this valuable information. I definitely agree that some (at least the ones that I've experienced) of these points actually work.
Best Regards,
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Has anyone posted a definition of Rutgers' study remark, " 'rebound' from vagal stimulation"?
I found this:
"Vagal rebound, a sharp increase in variability in the first minute of recovery, was reduced in men in..."
Vagal rebound and recovery from psychological stress
http://www.ncbi.nlm.nih.gov/m/pubmed/11485119/
Maybe there's something better to help us understand Dr. K.'s 'rebound' remark in the NORD Interim Report?
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It's great that this research is going on now. Do you guys know as to what are the parameters that are being measured for this research? Does it include testosterone or nay other hormone levels measurement? Thanks.
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"A preliminary interpretation of our current data is that POIS symptoms are accompanied by a lowered heart rate and heart rate variability (HRV), and that vagal stimulation may produce a beneficial effect on POIS symptoms (increased heart rate and HRV) as a 're-bound' from the vagal stimulation. These are very preliminary findings and continued research with additional participants is underway, to assess the reliability of these findings."
Does any of you (Stef, Demo, Daveman, Nightingale) know whether the statement about POIS symptoms being accompanied by a lowered heart rate and HRV refers to:
1. within-person variation, that is, a person with POIS has lower heart rate and HRV when experiencing POIS symptoms, compared to times where this same person is not experiencing POIS symptoms
2. between-person variation, that is, a person with POIS has lower heart rate and HRV when experiencing POIS symptoms compared to a person who does not have POIS - and both persons are assessed shortly after orgasm/ejaculation
I hope the statement refers to case 2 - since case 1 would not rule out the possibility that everyone, whether suffering from POIS or not, experiences lower heart rate and HRV after orgasm/ejaculation.
A Happy 2016 to all of you!
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"A preliminary interpretation of our current data is that POIS symptoms are accompanied by a lowered heart rate and heart rate variability (HRV), and that vagal stimulation may produce a beneficial effect on POIS symptoms (increased heart rate and HRV) as a 're-bound' from the vagal stimulation. These are very preliminary findings and continued research with additional participants is underway, to assess the reliability of these findings."
Does any of you (Stef, Demo, Daveman, Nightingale) know whether the statement about POIS symptoms being accompanied by a lowered heart rate and HRV refers to:
1. within-person variation, that is, a person with POIS has lower heart rate and HRV when experiencing POIS symptoms, compared to times where this same person is not experiencing POIS symptoms
2. between-person variation, that is, a person with POIS has lower heart rate and HRV when experiencing POIS symptoms compared to a person who does not have POIS - and both persons are assessed shortly after orgasm/ejaculation
I hope the statement refers to case 2 - since case 1 would not rule out the possibility that everyone, whether suffering from POIS or not, experiences lower heart rate and HRV after orgasm/ejaculation.
A Happy 2016 to all of you!
Hi, Blues Brother and All --
Dr. Komisaruk has definitely included men without POIS ("control subjects") in the study.
Also -- I know this is obvious but just as a reminder -- POIS symptoms play a huge role in the study. Dr. Komisaruk is looking at changes in the HR and HRV as they relate to POIS symptoms.
Based on the above, I'm pretty sure he's referring to your case #2 statement.
(This waiting for definitive findings/answers is really tough!)
Stef
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"A preliminary interpretation of our current data is that POIS symptoms are accompanied by a lowered heart rate and heart rate variability (HRV), and that vagal stimulation may produce a beneficial effect on POIS symptoms (increased heart rate and HRV) as a 're-bound' from the vagal stimulation. These are very preliminary findings and continued research with additional participants is underway, to assess the reliability of these findings."
Does any of you (Stef, Demo, Daveman, Nightingale) know whether the statement about POIS symptoms being accompanied by a lowered heart rate and HRV refers to:
1. within-person variation, that is, a person with POIS has lower heart rate and HRV when experiencing POIS symptoms, compared to times where this same person is not experiencing POIS symptoms
2. between-person variation, that is, a person with POIS has lower heart rate and HRV when experiencing POIS symptoms compared to a person who does not have POIS - and both persons are assessed shortly after orgasm/ejaculation
I hope the statement refers to case 2 - since case 1 would not rule out the possibility that everyone, whether suffering from POIS or not, experiences lower heart rate and HRV after orgasm/ejaculation.
A Happy 2016 to all of you!
Hi, Blues Brother and All --
Dr. Komisaruk has definitely included men without POIS ("control subjects") in the study.
Also -- I know this is obvious but just as a reminder -- POIS symptoms play a huge role in the study. Dr. Komisaruk is looking at changes in the HR and HRV as they relate to POIS symptoms.
Based on the above, I'm pretty sure he's referring to your case #2 statement.
(This waiting for definitive findings/answers is really tough!)
Stef
Thanks, Stef!
demo
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akilles, belated welcome to POISCenter.com!
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Stimulating the vagus nerve
1. Meditation
2. Have Positive Social Relationships
3. Breath Deeply and Slowly
4. Probiotics
5. Exercise
6. Cold
7. Massages
8. Fasting
9. Sleep or Lay on Your Right Side
10. Yoga
11. Tai Chi
12. Singing or Chanting
13. Gargling
14. Tongue Depressors
15. Acupuncture
16. Oxytocin
17. Zinc
18. Serotonin
19. Chew Gum: CCK
20. Laughter
21. Coffee Enemas
22. Coughing or Tensing the Stomach Muscles
23. Fish Oil – EPA and DHA
24. Make Sure Your Thyroid Hormones/T3 Are Normal
25. Prayer
Thanks, Colm! Are these in order of importance?
Demo,
They were really just a shortened version I plucked from something that forum member USERNAME posted here before from the link http://selfhacked.com/2015/07/30/28-ways-to-stimulate-your-vagus-nerve-and-all-you-need-to-know-about-it/
Just thought many wouldn't go into the link, but I felt the heading behaviours were interesting. Hopefully we don't have to do them all 3 times per day to fix our Vagus nerve :))
Regards,
Colm
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I have tried chewing gum a few times. I think it reduces my symptoms temporarily about 25%, that means if I stop chewing gum then that 25% improvement vanishes. Also watching an exciting movie seems to help.
I wonder why the vagal research is taking too long? I hope that research finds some solid results and some easy and effective ways to stimulate the vagus nerve.
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Very interesting. I registered in part to share somewhere that I have noticed POIS symptoms change while undergoing various treatments with hydrocodone, metoprolol, and IIRC, pseudoephedrine. They may be working by secondary effects (hydrocodone and pseudoephedrine both affect prolactin/dopamine, metoprolol affects prolactin levels and blocks certain neurochemical processes) but those three substances are also vagolytics.
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Welcome to POISCenter, cxm7!
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I wonder why the vagal research is taking too long?
Nature of the beast. I agree with you: research on rare disorders is painfully slow! I waited my whole life (decades) so I might be a LITTLE more patient :)
Thanks for bearing with it.
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Stimulating the vagus nerve
1. Meditation
2. Have Positive Social Relationships
3. Breath Deeply and Slowly
4. Probiotics
5. Exercise
6. Cold
7. Massages
8. Fasting
9. Sleep or Lay on Your Right Side
10. Yoga
11. Tai Chi
12. Singing or Chanting
13. Gargling
14. Tongue Depressors
15. Acupuncture
16. Oxytocin
17. Zinc
18. Serotonin
19. Chew Gum: CCK
20. Laughter
21. Coffee Enemas
22. Coughing or Tensing the Stomach Muscles
23. Fish Oil – EPA and DHA
24. Make Sure Your Thyroid Hormones/T3 Are Normal
25. Prayer
Thanks, Colm! Are these in order of importance?
Demo,
...Hopefully we don't have to do them all 3 times per day to fix our Vagus nerve :)) ...
Regards,
Colm
I heard it's only 2X per day, Colm :)
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So if I understand this correct, the theory is that the orgasm slows down the heartrate and because of that the body don`t get enough oxygen and because of that you feel tired. I know that that my heartrate doesn?t slow down. So in this study how much did the heart slow down and for how many Days?
Hi akilles,
My understanding from Dr. K.'s public statement is that in the small group of POIS participants studied to date, the symptoms of POIS are accompanied by a decreased heart rate and a decreased heart rate variability (HRV). Keep in mind, he's comparing the heart rates and HRVs of men with and without POIS...and so far, it seems he's found a difference.
You may or may not not notice the decreased heart rate while you're experiencing POIS symptoms, but I don't think one can measure his/her HRV. It's a value that's measured via a specialized monitor.
Perhaps more importantly, the vagus nerve is directly involved in the release of certain neurotransmitters, so the heart rate and HRV may be measurable signs that indicate abnormal neurotransmitter release during POIS. (That's only my interpretation.)
There's much more to this that Dr. Komisaruk won't be addressing at this point in the study (like specific heart rate).
Stef
Hey stef n all how are you, i wish to ask when we are expecting full report of study ???? ........2nd as i mentioned earlier my benefit from fish oil ...... I find fish oil being antiinflammatory it also thins the blood majorly benefits heart ......to which direction of study is going ......as major group of cognitive poisers ....... I feels that the key is between brain n heart .....n may be we are getting poor cerebral blood flow ......... In short may be we may get benefit from medicines for poor cerebral blood flow Vinpocetine ....which is also is antiinflammatory + increase cognition by increaing cerebral blood flow.......whats u think about this.
http://www.myithlete.com/do-fish-oil-supplements-improve-heart-rate-variability/
http://m.ajcn.nutrition.org/content/70/3/331.abstract?ijkey=0798da59fb22e7be57237d390ede958e724110c7&keytype2=tf_ipsecsha%3FlinkType%3DABST&journalCode=ajcn&resid=70%2F3%2F331
http://www.ncbi.nlm.nih.gov/pubmed/9524780?dopt=Abstract?access_num=9524780
http://www.bmj.com/content/312/7032/677.full?ijkey=0990a6e2e16d56f30b5c135e90df7e2ebf1b5049&keytype2=tf_ipsecsha%3FlinkType%3DFULL&journalCode=bmj&resid=312/7032/677
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username:
Quote from: Stef on January 04, 2016, 12:03:29 AM
Quote from: Hoping on January 02, 2016, 12:14:46 PM
"So excited to hear about the Rutgers study! I realize it's all very preliminary, but it's definitely exciting to see some movement. Thanks to the research team, Stef, POIS participants, and NORD for all your work so far! What are next steps in terms of the study? Are there more interim reports coming out? What sort of timeline are we looking at?"
Hi, Hoping (and Everyone),
The Rutgers study is a one-year study. There was a several-month delay in starting it due to the IRB Committee having questions, needing clarifications, etc., so NORD's MAC granted Dr. K. a one-year extension. This is why iit all moved at a snail's pace at the beginning.
(IRB delays are expected, because patient safety is paramount and every step has to be entirely understood and approved. Also, iit's lkely that none of the committee members had ever heard of POIS, so there may have been more questions than usual.)
Based on the paragraph provided by Dr. Komisaruk, it sounds like the study is moving full-steam ahead at this point. It has another six months, and should be completed around April or May 2016. The final report is due within 60 days of completion. So, the next (final) report should be received by NORD in June or July at the latest.
Dr. Komisaruk will undoubtedly write a paper with all the details, and it will be published in a reputable mefical journal. You'll all be able to read it, word for word, once it's published. With luck his paper will be accepted and published quickly.
I hope that was helpful!
Best wishes,
Stef
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Thanks Demo.
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OMG, so much progress since I last visited!
One of my symptoms in POIS that I could never explain was that my voice changed. With my HRV out of whack when in POIS, does my voice change make sense to be related to an off-whack HRV?
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Professor Komisaruk's 3rd report is due on the 18th of this month. NORD has followed up and asked him to pay particular attention to the public section and inquired of additional recruits since Nightingale and Andy.
They hope to have the report soon!
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Professor Komisaruk's 3rd report is due on the 18th of this month. NORD has followed up and asked him to pay particular attention to the public section and inquired of additional recruits since Nightingale and Andy.
They hope to have the report soon!
Thanks Demo for letting us know.
Happy and looking forward to it
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You're welcome, less_fogged! :)
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Thanks demografx, excellent news. Look forward to any new updates when available.
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Thanks, Prancer!
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Hi All,
Demo and Daveman just received the public portion of Dr. Komisaruk's interim report from NORD. Here it is --
"A preliminary interpretation of our current data is that POIS symptoms are accompanied by a lowered heart rate and heart rate variability (HRV), and that vagal stimulation may produce a beneficial effect on POIS symptoms (increased heart rate and HRV) as a 're-bound' from the vagal stimulation. These are very preliminary findings and continued research with additional participants is underway, to assess the reliability of these findings."
Stef
Do you have a link to a PDF, a website, or any original document? I'd like to post about this to Wikipedia. But I need something to link to.
La_pet1te_mort, I just wrote to NORD to clarify, will let you know as soon as I hear back.
Thank you for working on Wikipedia!
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OMG, so much progress since I last visited!
Thanks for the nice feedback! :)
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Do you have a link to a PDF, a website, or any original document? I'd like to post about this to Wikipedia. But I need something to link to.
NORD just sent me Report #1 in Word. Waiting for #2.
Link to #1 screenshot below:
http://poiscenter.com/forums/index.php?topic=2086.msg18439#msg18439
-
(http://i858.photobucket.com/albums/ab143/demografx/93E6F92E-10E5-470A-99DD-76844AA5D34B.png)
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La_pet1te_mort: your Wikipedia link (the next post below) for report #2:
http://poiscenter.com/forums/index.php?topic=2086.msg18441#msg18441
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"A preliminary interpretation of our current data is that POIS symptoms are accompanied by a lowered heart rate and heart rate variability (HRV), and that vagal stimulation may produce a beneficial effect on POIS symptoms (increased heart rate and HRV) as a 're-bound' from the vagal stimulation. These are very preliminary findings and continued research with additional participants is underway, to assess the reliability of these findings."
-
La_pet1te_mort, NORD requested a Word doc from Rutgers for Report #3.
If you wish, instead of the previous link/post, to see the pdf/Word NORD sent me for #1 - on NORD stationery - I'll need your email address to send it to you. You can send it to me via PM.
Thanks again for your efforts!
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Professor Komisaruk's 3rd report is due on the 18th of this month. NORD has followed up and asked him to pay particular attention to the public section and inquired of additional recruits since Nightingale and Andy.
They hope to have the report soon!
Do we have any update on the report ? I am sorry if I sound like a manager asking status but just curious..
I started taking seacod capsules, there is about 50 % improvement in physical symptoms but not much improvement in cognitive behavior.
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Do we have any update on the report ?
Welcome to our forum!
All we can do is wait.
Report dates are only approximate.
We're all waiting with you :)
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Thanks Demografx.
I wish we get to know about some medicine with this research. Though official drug may take some time.
All of us have faced difficulties and problems in career, girlfriend, marriage and what not. To me it seems that we are disabled in a way but have to compete with normal people in all aspects. And behind each of us who had survived though this lies a story of unmatched hard work with unbearable pain. Several times we would have survived an accident on a busy street as our mind was cluttered with brain fog.
I am thankful to this forum to give us a new hope. "Deeeeep in my heaaaaart... I do belieeeeve that we shall overcome some dayyyyy..."
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Inspiring words, rakeshbaasu!
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All of us have faced difficulties and problems in career, girlfriend, marriage and what not. To me it seems that we are disabled in a way but have to compete with normal people in all aspects. And behind each of us who had survived though this lies a story of unmatched hard work with unbearable pain. Several times we would have survived an accident on a busy street as our mind was cluttered with brain fog.
so deeply true.
it is hard to compete with this kind of breaks always on.. very hard.
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So true, ve-to!
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From NORD today, Wednesday, March 23, 2016
"Hi Demo,
Professor Komisaruk (your PI - principal investigator) intends/expects to submit the next scientific report to NORD by Friday the 25th or by the end of the week.
I will be sure to review right away and forward the public section (which will then be posted by you at the forum), which I've asked him to pay particular attention to.
All the best,
Jacqui" [Kraska]
NORD
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I'll ask NORD.
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Hi, La_pet1te_mort & demo,
I'm pretty certain NORD won't post the public paragraph, nor will Dr. Komisaruk's website post it.
But -- once it's posted here, you could probably use the poiscenter link (to the Interim Report post) and add that to Wikipedia.
Or -- maybe Daveman could post it onto the actual home page (poiscenter.com) -- maybe that would legitimize it for Wikipedia?
No?
Stef
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Hi, La_pet1te_mort & demo,
I'm pretty certain NORD won't post the public paragraph, nor will Dr. Komisaruk's website post it.
But -- [bold-type highlighting mine -- demo] once it's posted here, you could probably use the poiscenter link (to the Interim Report post) and add that to Wikipedia.
Or -- maybe Daveman could post it onto the actual home page (poiscenter.com) -- maybe that would legitimize it for Wikipedia?
No?
Stef
I already posted the links to the Interim Report #1 and the Interim Report #2 at POISCenter on this thread (e.g., see my post re. the Interim Report #2 link at the top of this page).
La_pet1te_mort reply-posted (above) that this is not acceptable at Wikipedia.
Their requirements are more stringent.
-
Wikipedia editors are pretty strict. Even if you email me a PDF, that will not be good enough for them. It is a lot better if the PDF is posted on some official website. Is the report posted on the NORD website? Or at least Komisaruk's website? Can he post it on his website?
As I mentioned, I asked NORD.
La_pet1te_mort, please feel free to email Dr. Nan Wise, cc: Dr. Barry Komisaruk -- and ask the same.
Perhaps they might have some other ideas as well!
nanwise@psychology.rutgers.edu
brk@psychology.rutgers.edu
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NICE EASTER PRESENT!! -- demo
On Mar 26, 2016, at 10:40 AM, Jacqui <jkraska@rarediseases.org> wrote:
Hi Demo, you too! [Happy Easter]
I received the [interim] report so I'll send over Monday morning after reviewing.
All the best,
Jacqui
NORD
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Wikipedia editors are pretty strict. Even if you email me a PDF, that will not be good enough for them. It is a lot better if the PDF is posted on some official website. Is the report posted on the NORD website? Or at least Komisaruk's website? Can he post it on his website?
As I mentioned, I asked NORD.
La_pet1te_mort, please feel free to email Dr. Nan Wise, cc: Dr. Barry Komisaruk -- and ask the same.
Perhaps they might have some other ideas as well!
nanwise@psychology.rutgers.edu
brk@psychology.rutgers.edu
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how do we get a copy of this report? can you upload to google docs and share with everyone? wanna just email it to me?
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Defsync, the report will be posted here at this thread, just like the first two.
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Thanks Demografx.
I wish we get to know about some medicine with this research. Though official drug may take some time.
At this time, we're hoping that Vagal Stimulation will work, rather than drugs/medicine. If not, medicinal research might be next (hopefully - with more funding).
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Wikipedia editors are pretty strict. Even if you email me a PDF, that will not be good enough for them. It is a lot better if the PDF is posted on some official website. Is the report posted on the NORD website? Or at least Komisaruk's website? Can he post it on his website?
Opened a new thread -- "Wikipedia" -- please see:
http://poiscenter.com/forums/index.php?topic=2279.msg18522#msg18522
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Hello All,
Weren't we supposed to receive something on monday ?
Thanks
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Hello All,
Weren't we supposed to receive something on monday ?
Thanks
Lapoisse,
below posted recently by Demo (from NORD's contact) last week. Possibly meant this week? Also, "intends/expects" in the research world
probably means it won't be released until it is correct.
Frustrating wait it is, right enough when we are all waiting for some positive news.
Regards,
Colm
From NORD today, Wednesday, March 23, 2016
"Hi Demo,
Professor Komisaruk (your PI - principal investigator) intends/expects to submit the next scientific report to NORD by Friday the 25th or by the end of the week.
I will be sure to review right away and forward the public section (which will then be posted by you at the forum), which I've asked him to pay particular attention to.
All the best,
Jacqui" [Kraska]
NORD
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We're waiting curiously!
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On Wed, Mar 30, 2016 at 9:06 AM, demografx wrote:
Jacqui, is there a delay/problem?
On Mar 30, 2016, at 9:32 AM, Jacqueline Kraska wrote:
Hi Demo,
Due to the number of scientific reports that the MAC
[NORD's Medical Advisory Committee] needs to review there is a slight delay in posting the public section of the [POIS] report. However, the [POIS] report that the PI [Dr. Komisaruk] sent was great, he included a lot of detail to share, [bold-highlighting mine -- demo] and NORD looks forward to sending it over ASAP.
Best wishes,
Jacqui
NORD
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Latest ETA from NORD: Friday Jacqui to hopefully receive Dr. K report - reviewed/approved by senior medical advisors @ NORD.
To all POISers: believe me, I'm as anxious to see this as you are :)
...and just as frustrated!!
(http://i858.photobucket.com/albums/ab143/demografx/2137F323-5F0B-4E8C-A874-1A8794F355B3.jpg)
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On Wed, Mar 30, 2016 at 9:06 AM, demografx wrote:
Jacqui, is there a delay/problem?
On Mar 30, 2016, at 9:32 AM, Jacqueline Kraska wrote:
Hi Demo,
However, the [POIS] report that the PI [Dr. Komisaruk] sent was great, he included a lot of detail to share, [bold-highlighting mine -- demo] .
Best wishes,
Jacqui
NORD
Thanks for update Demo,
sounds good !
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cannot wait... come on! eheh :)
thanks demo
the full report will be visible on pubmed or similar?
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Hi, ve-to and Everyone,
The information we're waiting for is the "public portion" of Dr. Komisaruk's recent NORD progress report. Only this small portion will be shared with the forum for now, because he hasn't formally published his study in a journal yet.
NORD's MAC receives extremely detailed progress reports ~ every 6 months while a study is in progress. These interim reports are reviewed by the MAC for scientific merit.
As a courtesy to the groups funding these studies (like poiscenter!), NORD requests that the PI write an additional brief summary with each progress report...something that can be publicly shared/posted on the groups' websites before the study is actually published in a journal. Some PIs write several paragraphs for the public, but most often it's only a paragraph or two.
So, that's what we're waiting for -- the brief public summary.
Stef
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From NORD today @ 1:13pm PST
Hi Demo,
Sorry, been crazy day... in meeting now and another right after. Yes, there are 4 reports due in total and 3 have now been submitted. So there will be a final [POIS report] due on 09.18.2016. [bold-type mine-demo]
And waiting to hear back from MAC but should be soon.[emphasis mine-demo]
All the best,
Jacqui
NORD
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From NORD today @ 1:13pm PST
Hi Demo,
...And waiting to hear back from MAC but should be soon.[emphasis mine-demo]
All the best,
Jacqui
NORD
(http://i858.photobucket.com/albums/ab143/demografx/2137F323-5F0B-4E8C-A874-1A8794F355B3.jpg)
:) :) :)
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While we're waiting...let's look @ NORD's......MAC: who are they???...
http://rarediseases.org/about/leadership/scientific-medical-advisory-committee/
We are so...fortunate!
What a stellar medical/research team to oversee POIS' medical research @ Rutgers!!
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Excellent, thanks everyone!!
-
:)
-
Eagerly awaiting :)
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Eagerly awaiting :)
Maybe with enough of us doing the same, our positive energy will expedite this :)
-
Wishing everyone a nice weekend :)
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Now that our sinking ship has seen a lighthouse... we all are excited...Thanks Demo... you are "The Captain" :)
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Demo, your new profile photo though! :P Mario saved princess, you will save us! :)
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From NORD today @ 1:13pm PST
Hi Demo,
...And waiting to hear back from MAC but should be soon.[emphasis mine-demo]
All the best,
Jacqui
NORD
Thanks for the updates demo!!!
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Thanks, everyone, for your terrific
support!!!! :) :) :)
-
Demo, your new profile photo though! :P
Your profile photo is cool, Raj! :)
...Mario saved princess, you will save us! :)
HAHA, Raj! :)
-
If we somehow ever lose track of one another, we can always
hook up here:
http://www.thenakedscientists.com/forum/index.php?topic=6576.new#new
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I have re-activated the forum named:
POISCenter
~~ at Delphi Forums ~~
http://m.delphiforums.com/poisadmin
LET'S SEE WHICH FORUM BEST SUITS OUR NEEDS!
(Ours here crashed before, so...who knows? Delphi has
been around & stable since the '80's).
So...let's try some parallel posting!
POIS-free wishes to everyone!!
demo
(http://i858.photobucket.com/albums/ab143/demografx/F8BE03B9-22C5-435D-A93E-6DBD137DD45E.png)
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Eagerly awaiting :)
Maybe with enough of us doing the same, our positive energy will expedite this :)
It's Sunday evening, keep sending positive energy for speedy NORD release of Rutgers' Interim Report #3!
:)
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It's Sunday evening, keep sending positive energy for speedy NORD release of Rutgers' Interim Report #3!
:)
It's Sunday evening Monday morning, keep sending positive energy for speedy NORD release of Rutgers' Interim Report #3!
:)
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On Apr 4, 2016, at 9:09 AM, Jacqueline Kraska wrote:
Hi Demo,
I hope you had a nice weekend.
MAC is still reviewing the reports as there were several of them... but I'm sure I'll receive the review anytime now... and I'll get it over to you right away :)
Best wishes,
Jacqui
NORD
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On Apr 4, 2016, at 9:09 AM, Jacqueline Kraska wrote:
Hi Demo,
I hope you had a nice weekend.
MAC is still reviewing the reports as there were several of them... but I'm sure I'll receive the review anytime now... and I'll get it over to you right away :)
Best wishes,
Jacqui
NORD
Don't want to sound pessimistic about it but we still have months or maybe years till the research finishes, and even if it finishes that doesn't guarntee a treatment :/
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On Apr 4, 2016, at 9:09 AM, Jacqueline Kraska wrote:
Hi Demo,
I hope you had a nice weekend.
MAC is still reviewing the reports as there were several of them... but I'm sure I'll receive the review anytime now... and I'll get it over to you right away :)
Best wishes,
Jacqui
NORD
Don't want to sound pessimistic...
...but you do :)
...we still have months or maybe years till the research finishes...
Months.
September.
...and even if it finishes that doesn't guarantee a treatment :/
I haven't seen ANY guarantee of treatment in 10 years @ the POIS forums.
Have you?
Nas, ask yourself: how much further advanced will your own POIS knowledge -- and POIS' REAL curative possibilities -- be...than BEFORE the scientific POIS research started???
Best wishes,
demo
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Hi Demo,
Is it possible to create a thread which only the creator can add to? I think with the study updates this would be beneficial so people can easily find the official statements without having to go through long threads of conversations. (oops just added to the pile!)
Thanks - FB
-
On Apr 4, 2016, at 9:09 AM, Jacqueline Kraska wrote:
Hi Demo,
I hope you had a nice weekend.
MAC is still reviewing the reports as there were several of them... but I'm sure I'll receive the review anytime now... and I'll get it over to you right away :)
Best wishes,
Jacqui
NORD
Don't want to sound pessimistic...
...but you do :)
...we still have months or maybe years till the research finishes...
Months.
September.
...and even if it finishes that doesn't guarantee a treatment :/
I haven't seen ANY guarantee of treatment in 10 years @ the POIS forums.
Have you?
Nas, ask yourself: how much further advanced will your own POIS knowledge -- and POIS' REAL curative possibilities -- be...than BEFORE the scientific POIS research started???
Best wishes,
demo
I don't know what are you trying to point here but I didn't know about my illness till I suddenly found it by accident, because I couldn't get why other people don't feel what I feel, I tried donepezil I tried an NDMA inhibitor they didn't work. I'm fully sunk in depression I have no friends or a girl friend and till now I can't feel like I'm free to be who I want to be and you really think that there is a solution to my problem ? If we all don't keep working on solutions and causes the research will just mean alots of time wasted ill
Talk about not being pessimistic....
-
Let's stay on track, guys. I'm sure we're all in agreement that any progress is still progress Although it may not bring immediate relief, the update will morph our understanding of POIS for a while.
-
I don't know what are you trying to point here but I didn't know about my illness till I suddenly found it by accident, because I couldn't get why other people don't feel what I feel, I tried donepezil I tried an NDMA inhibitor they didn't work. I'm fully sunk in depression I have no friends or a girl friend and till now I can't feel like I'm free to be who I want to be and you really think that there is a solution to my problem ? If we all don't keep working on solutions and causes the research will just mean alots of time wasted ill
Talk about not being pessimistic....
Nas, It sounds you're deeply depressed and I am sorry about it. HOWEVER, there is NO point to try spreading your negative pov on a forum where we are all surving thanks to hope. It always brings you something by being positive. Have you ever been happy by being negative about everything?
-
Let's stay on track, guys. I'm sure we're all in agreement that any progress is still progress Although it may not bring immediate relief, the update will morph our understanding of POIS for a while.
Exactly. Well said, notmythirdaccount!
-
...Have you ever been happy by being negative about everything?
Exactly!
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...Talk about not being pessimistic....
Yes, Nas, please do talk that way! :)
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Hi Demo,
Is it possible to create a thread which only the creator can add to? I think with the study updates this would be beneficial so people can easily find the official statements without having to go through long threads of conversations. (oops just added to the pile!)
Thanks - FB
Asking Professor Daveman:)............
-
I don't know what are you trying to point here but I didn't know about my illness till I suddenly found it by accident, because I couldn't get why other people don't feel what I feel, I tried donepezil I tried an NDMA inhibitor they didn't work. I'm fully sunk in depression I have no friends or a girl friend and till now I can't feel like I'm free to be who I want to be and you really think that there is a solution to my problem ? If we all don't keep working on solutions and causes the research will just mean alots of time wasted ill
Talk about not being pessimistic....
Nas, It sounds you're deeply depressed and I am sorry about it. HOWEVER, there is NO point to try spreading your negative pov on a forum where we are all surving thanks to hopeness. It always brings you something by being positive. Have you ever been happy by being negative about everything?
It's not about being happy and sad, it's about finding the solution to our problems, happenies in my point of view is to be able to smile with the ones who you love and share love with every one which is something I can't fucking do!!!
Look all what I'm saying is that we should work harder all to research and experiment to find the final solution and I just can't see any solution here not even a valid explanation....
-
...I just can't see any [POIS] solution here not even a valid
explanation....
Just stick around here, Nas, and you WILL! You have my
GUARANTEE! :) :)
...and even if it finishes that doesn't GUARANTEE a treatment :/
Otherwise, Nas...please tell us all a BETTER website/medical info
resource(s) for a ***superior*** POIS understanding!
Tell us all something better than POISCenter.com !
I will be the FIRST POISer to join U!! :) :)
Best wishes,
demo
-
(http://i858.photobucket.com/albums/ab143/demografx/DFA0038B-56D1-4014-A246-3BEC0E22E270.gif)
...and no, I don't really look like Luigi of Mario Bros! :)
demo
(http://i858.photobucket.com/albums/ab143/demografx/AD0F070B-8936-4132-91C0-8E4F70C36F6F.jpg)
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Hi Demo,
Is it possible to create a thread which only the creator can add to? I think with the study updates this would be beneficial so people can easily find the official statements without having to go through long threads of conversations. (oops just added to the pile!)
Thanks - FB
Asking Professor Daveman:)............
FB, the more I think about it, your idea is excellent!
Daveman is a little snowed under, so why don't we start a thread, "Rutgers Interim Reports", and post 1 - 4 there. If other people post there, we can move their posts to another thread.
Let me know if you wish to start the thread -- or I can do it.
-
...I just can't see any [POIS] solution here not even a valid
explanation....
Just stick around here, Nas, and you WILL! You have my
GUARANTEE! :) :)
...and even if it finishes that doesn't GUARANTEE a treatment :/
Otherwise, Nas...please tell us all a BETTER website/medical info
resource(s) for a ***superior*** POIS understanding!
Tell us all something better than POISCenter.com !
I will be the FIRST POISer to join U!! :) :)
Best wishes,
demo
Well... there isn't, and I will stick more to figure out more about what you people say but till now I'm not finding anything
Still, even if we kinda the only website that deals with this syndrome, that is a bigger responsibilty to dig even deeper and do more reaserch
I all ways have this philosophy in my mind when I face problems : ( Life is fair, but the problems we face are because of the mistakes we do, and one big mistake is or
our lack of knowledge... )
-
Well... there isn't [a better resource] and I will stick more to figure out more about what you people say but till now I'm not finding anything
Still, even if we kinda the only website that deals with this syndrome, that is a bigger responsibilty to dig even deeper and do more reaserch
I all ways have this philosophy in my mind when I face problems : ( Life is fair, but the problems we face are because of the mistakes we do, and one big mistake is or
our lack of knowledge... )
Nas, I know that it's a lot to expect that Dr Komisaruk had all the answers, but his research is more than we've had in a long time and I'm sure it will shed light enough to lead to the next step.
Digging deeper costs money. Any good news will help to stimulate further investigation/and the donations that contribute to that.
Many of us here put good hard earned dollars into getting this investigation started.
Any other digging on internet or personally had shown very little real product.
Just conjecture.
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To reply to Nas;
Even with hard POIS and depression, I still have plenty of friends and had many girlfriends. You can't blame all the time POIS.
I pushed and keep myself pushing to do the first step and meet new people.
I found a job abroad and went for adventures while english is not my maternal language.
All what we could/can do it donate for the research!
Nas, did you personally pledged for this investigation at least???
I assume the answer is a big YES since not donating for this research IS indeed a big mistake .. ;)
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Excellent points, Habibou.
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"A preliminary interpretation of our current data is that POIS symptoms are accompanied by a lowered heart rate and heart rate variability (HRV), and that vagal stimulation may produce a beneficial effect on POIS symptoms (increased heart rate and HRV) as a 're-bound' from the vagal stimulation. These are very preliminary findings and continued research with additional participants is underway, to assess the reliability of these findings."
I am extremely sorry but i am bit about reports ......the mentioned is the 1 or 2 ?? if its 2 then where is 1.........plz help
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yes, username, you posted #2...below is #1:
"The IRB applications authorizing our study have been approved, the POIS questionnaire characterizing relevant medical history and symptomatology has been developed, site-tested, and expanded, and will now, upon IRB approval, be distributed to the POIS forum for more extensive response and analysis.
POIS sufferers have been contacted, interviewed, and local POIS persons will be the first to participate in the physiological interventions. The necessary equipment has been obtained, the physiological measurement methods have been developed and are functioning properly, and the necessary fMRI procedures and analysis methods have been developed and are ready to be deployed."
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yes, username, you posted #2...below is #1:
"The IRB applications authorizing our study have been approved, the POIS questionnaire characterizing relevant medical history and symptomatology has been developed, site-tested, and expanded, and will now, upon IRB approval, be distributed to the POIS forum for more extensive response and analysis.
POIS sufferers have been contacted, interviewed, and local POIS persons will be the first to participate in the physiological interventions. The necessary equipment has been obtained, the physiological measurement methods have been developed and are functioning properly, and the necessary fMRI procedures and analysis methods have been developed and are ready to be deployed."
THANKS DEMO and we are waiting for 3rd one ? which is about to be out .....any date?
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Yes, username, we are waiting for the 3rd one.
And #4 (final) is expected September 18, 2016.
And when published in a medical journal it will be much more extensive, much more detailed.
-
Thank you for posting, username, I'm sure other people here had the same questions in mind.
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It may sound stupid but any update on when the 3rd one is going to be out?
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Raj, "any day now" is what we've been told by NORD. It's been completed by Rutgers, and submitted to NORD -- but needs to be reviewed by senior medical advisors at NORD. These advisors have many reports to review at this time.
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To reply to Nas;
Even with hard POIS and depression, I still have plenty of friends and had many girlfriends. You can't blame all the time POIS.
I pushed and keep myself pushing to do the first step and meet new people.
I found a job abroad and went for adventures while english is not my maternal language.
All what we could/can do it donate for the research!
Nas, did you personally pledged for this investigation at least???
I assume the answer is a big YES since not donating for this research IS indeed a big mistake .. ;)
I don't have a visa card or a bank account or a life so no I didn't, and yeah once you loose all of your social skills once you masturbate good luck with finding friends without feeling socially retarded
-
Wait, So I was thinking if the immune system attacks its own sperms in the urinary tract wouldn't be one solution is to replase the penis urinary tract to an artificial one ? I hope you get the idea cause I don't know how to say it
-
THANKS TO FB...for starting a thread (viewing only) that shows the Interim NORD-POIS Rutgers reports:
Hi,
This thread has been created not for discussion but only for posting POIS study updates:
http://poiscenter.com/forums/index.php?topic=2285.msg18645#msg18645
Please contact me [FloppyBanana] via private message if you wish to post something here (eg media links related to Dr. Komisaruk's study etc).
-
On Mon, Apr 11, 2016 at 4:13 PM, demografx wrote:
...no estimate yet of when MAC review for POIS study will finish?
Best,
demo
(http://i858.photobucket.com/albums/ab143/demografx/B863BB34-69BF-46F6-82E9-E9D038611F7B.png)
On Apr 11, 2016, at 4:35 PM, Jacqueline Kraska/NORD wrote:
Hi demo,
Sorry, I haven't been ignoring you. Just been very busy and unfortunately often in meetings...
I have not yet heard from MAC but expect to this week. I will follow up with the chair and see if she can confirm an time.... With regards to publishing [POIS interim reports] on our website and elsewhere, we have had one meeting but follow up regarding the discussion needs to take place so I plan to meet again with communications next week.
I'll be in touch ASAP - promise.
Kind regards,
Jacqui
Jacqueline Kraska
Research Programs Manager
National Organization for Rare Disorders
55 Kenosia Avenue
Danbury, CT 06810
Office: (203) 304-7205
Work cell: (475) 529-5172
-
To reply to Nas;
Even with hard POIS and depression, I still have plenty of friends and had many girlfriends. You can't blame all the time POIS.
I pushed and keep myself pushing to do the first step and meet new people.
I found a job abroad and went for adventures while english is not my maternal language.
All what we could/can do it donate for the research!
Nas, did you personally pledged for this investigation at least???
I assume the answer is a big YES since not donating for this research IS indeed a big mistake .. ;)
I don't have a visa card or a bank account or a life so no I didn't, and yeah once you loose all of your social skills once you masturbate good luck with finding friends without feeling socially retarded
Well, thats the thing! I do have 2 O per week with my girlfriend and I push myself while I am socially retarded.. I just don't let POIS win as you currently do
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I just don't let POIS win...
:) :) :)
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Cross-posted from "...familiar place" thread:
...Current medical practises regarding [POIS] research, recognition, etc. can only improve even if it still feels like its going at a snails pace...
Thanks, less_fogged, your words above helped me become a little more patient.
So...I hope others will feel the same way.
It's not easy...waiting!
:)
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...finding friends without feeling socially retarded.
"socially retarded" ;D...excellent choice of words. Never heard that expression before.
Thanks, Habibou & Nas
-
(http://i858.photobucket.com/albums/ab143/demografx/6B71E32B-4FC4-457F-9AA4-305F383FC20B.jpg)
(http://i858.photobucket.com/albums/ab143/demografx/B863BB34-69BF-46F6-82E9-E9D038611F7B.png)
is reviewing the Interim POIS Report to be posted here ~~ completed by
(http://i858.photobucket.com/albums/ab143/demografx/5E0E504D-8449-4DAA-907F-A6E4DCFA87FF.png)
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On Wed, Apr 13, 2016 at 12:29 AM, demografx wrote:
Hi Jacqui. From your [previous] email, "I have not yet heard from MAC but
expect to this week....I will follow up with the [MAC] chair and see if she can
confirm a time."
Jacqui, please let us know what the chair says.
Thanks again.
demo
(http://i858.photobucket.com/albums/ab143/demografx/B863BB34-69BF-46F6-82E9-E9D038611F7B.png)
On Apr 13, 2016, at 6:44 AM, Jacqueline Kraska/NORD wrote:
Hi demo,
I just followed up and asked if the Chair [of MAC] could give her approval to share specifically the report from B Komisaruk [with POISCenter forum members] before the rest of the assessment is complete.... Hopefully it will be sent back before the rest of them... I'll let you know ASAP.
All the best,
Jacqui
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While we're waiting...again :) let's look @ NORD's......MAC: who are they???...
http://rarediseases.org/about/leadership/scientific-medical-advisory-committee/
We are so...fortunate!
What a stellar medical/research team to oversee our POIS medical research @ Rutgers!!
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On Thu, Apr 14, 2016 at 10:35 PM, demografx wrote:
...I thought I'd check in [to NORD] just in case there's any news - minor news is good :) -
that I can let my POIS readers know about --anything new over the weekend...
Be well,
demo
(http://i858.photobucket.com/albums/ab143/demografx/B863BB34-69BF-46F6-82E9-E9D038611F7B.png)
On Apr 15, 2016, at 6:24 AM, Jacqueline Kraska wrote:
...[The POISCenter Interim Report] is currently being reviewed by the Chair of our Medical Advisory Committee [MAC] and [we] hope to share it by the close of Monday....
All the best,
Jacqui
NORD
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On Mon, Apr 18, 2016 at 3:01 PM, demografx wrote:
Hi Jacqui...
Still possible today??
demo
On Apr 18, 2016, at 12:52 PM, Jacqueline Kraska/NORD wrote:
Hi demo,
Still possible... and I have been sent feedback in the evening, especially given the different timezones.
I know a priority was set on completing the review... but I will follow up again tomorrow, if I don't hear back by the end of the day.
Let you know ASAP.
All the best,
Jacqui
NORD
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Thanks for the persistence Demo!
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Limejuice, it's a tough job, somebody's gotta do it!
;D
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Good job, Demo. Thanks for your efforts :)
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Thanks, JL!
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On Wed, Apr 20, 2016 at 10:46 AM, demografx wrote:
Just checking in-
demo
On Apr 20, 2016, at 11:03 AM, Jacqueline Kraska/NORD wrote:
Hi demo,
Sorry, no feedback yet. I'm going to follow up again now.
Thank you for keeping on top of this and following up....
All the best,
Jacqui
NORD
-
:'(
-
:'(
Don't fret, Raj:
(http://i858.photobucket.com/albums/ab143/demografx/7C600F9E-024A-4F54-AA2A-2DF24613248D.gif)
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NICE EASTER PRESENT!! -- demo
On Mar 26, 2016, at 10:40 AM, Jacqui <jkraska@rarediseases.org> wrote:
Hi Demo, you too! [Happy Easter]
I received the [interim] report so I'll send over Monday morning after reviewing.
All the best,
Jacqui
NORD
Am I alone to think think this delay is crazy ?I know its science and we have a such an experimented team at Nord but in the world I live, such a delay without any explanation is not acceptable.
I'm not expecting much of this report but we all payed for that and have already been waited such a long time ; I think we deserve a bit of courtesy
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We are not even in the NORD database???
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Hi, LAPOISSE,
THANK YOU, I forwarded your comments to NORD.
demo
-
I can say with certainty that most medical research can be slow and frustrating at times.
-
I wish we get to know about some medicine with this research. Though official drug may take some time.
Let's hope that our future POIS pharmaceutical research goes better than this:
(http://i858.photobucket.com/albums/ab143/demografx/A0C34142-0CCD-4D53-BFD6-E83D825759D7.jpg)
;D
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Dear Demografx!
1) Would you please to to summarise - to write some words about current situation with POIS-research by BArry Komisaruk.
Do we have any results? Any recommendation for us?
Are we waiting for any another information from Barry?
2) By your own opinion. By your own current feelings and experience - what is the POIS in your case? How are you defending yourself from POIS and how are you fighting against symptoms of POIS?
I appreciate you for your answer!
Regards,
Dmitry!
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Dear Demografx!
1) Would you please to to summarise - to write some words about current situation with POIS-research by BArry Komisaruk.
Do we have any results? Any recommendation for us?
Are we waiting for any another information from Barry?
2) By your own opinion. By your own current feelings and experience - what is the POIS in your case? How are you defending yourself from POIS and how are you fighting against symptoms of POIS?
I appreciate you for your answer!
Regards,
Dmitry!
Hi Dmitry,
1) here are the first 2 scientific progress reports so far that Dr Komisaruk submitted to NORD -- we are still waiting for #3:
http://poiscenter.com/forums/index.php?topic=2285.msg18645#msg18645
#4 (the Final Report) is due: September 18, 2016.
2) I personally found testosterone to be very effective for my POIS:
http://poiscenter.com/forums/index.php?topic=17.0
Best POIS-free wishes, Dmitry, and please see our Welcome Page!
http://tinyurl.com/lwwns6z
Best regards,
demo
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Here is the latest report on the situation in NORD and their ferocious work ethic
https://www.youtube.com/watch?v=NCHq0m67lq8
(http://s31.postimg.org/ta7bzdc5j/a1f394392fe4961fcbfab909e30b74d9.jpg) (http://postimg.org/image/ta7bzdc5j/)
Lodewijkp, I don't understand your post...please explain? :)
Thank you!
demo
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From email exchange today between demografx and Jacqui Kraska/NORD:
The PI (principal investigator), Dr Komisaruk, did send his scientific report and actually it is comprehensive. However, NORD's Medical Advisory (MAC) does need to review the report for assessing the work that has been done and progression in comparison to the previous report, and give approval before we publish the public section. Our MAC is made up of volunteers who review reports and fulfill all other MAC responsibilities in their spare time and Jacqui Kraska truly believes given their professional commitments they do the best they can. There were an extensive number of reports that went over last time (more than ever in the past) and it's taken time to do the reviews and looking at prior reports.....
Jacqui is sorry that she cannot share them earlier, but she cannot herself do this piece of work, all she can do is follow up and be supportive of MAC doing it.
demo
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This report is not going to tell us much right? It is the final paper that will tell us what really want to know, the results.
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This report is not going to tell us much right? It is the final paper that will tell us what really want to know, the results.
I'm wondering why NORD wants to give us just the public section, we are interested to read the whole report.
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zeynali900, we will only see the detail when it is in a peer-reviewed medical publication.
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This report is not going to tell us much right? It is the final paper that will tell us what really want to know, the results.
I'm not sure I agree.
I, for one, am expecting a lot.
Interesting POIS-correlates already began to develop in the 2nd Report, e.g., heart rate and HRV.
Report #3 will prove/disprove the earlier findings - with more forum volunteers. And more data.
And if THAT's true, it bodes well for POIS treatment, i.e., Vagus Nerve Stimulation!
I'm definitely looking forward to Report #3!
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And if THAT's true, it bodes well for POIS treatment, i.e., Vagus Nerve Stimulation!
Yes, but it won't provide an immediate treatment. How many of us afford to buy a VNS? How many of us will gain insurance coverage? At least not me.
But I'm happy for other members that get cured.
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Hi zeynali900,
There are affordable ways if the study goes in that direction. I don't want to delve deeper into several possibilities though just now.
Let's not jump the gun.
Let's wait for conclusions.
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To all POISers: believe me, I'm as anxious to see this as you are :)
...and just as frustrated!!
(http://i858.photobucket.com/albums/ab143/demografx/2137F323-5F0B-4E8C-A874-1A8794F355B3.jpg)
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On Apr 29, 2016, at 7:42 AM, Jacqueline Kraska/NORD wrote:
Hi demo,
Sorry it has taken some time but please find attached the public section of the 3rd scientific report, which was the same as provided in the section 2 for our reviewers called "accomplishments"...
All the best,
Jacqui
--
Jacqueline Kraska
Research Programs Manager
National Organization for Rare Disorders
===============================
(http://i858.photobucket.com/albums/ab143/demografx/69EFFF22-03EB-46F0-8AC6-0D21A56BD568.png)
"Based on the 97 respondents (mean age: 33.5 years) summarized in the attached Table, a clear picture emerges of the age of onset of POIS symptoms as being in adolescence (mean: 18 years of age), that POIS symptoms can be triggered by self- or partner erotic stimulation that does not necessarily involve intercourse. Penile stimulation is the most prevalent inducer of POIS symptoms compared to rectal or prostate stimulation. The POIS symptoms that are most prevalent are: “Brain fog”, lack of concentration, and fatigue, each of which symptoms were reported by at least 82% (80-83/97) of the respondents. These three symptoms are also the most severe, as indicated by a Likert scale (i.e., subjective rating of severity on a scale from 1 to 10 with 10 being the most severe possible). In order of decreasing intensity, the most prevalent symptoms are: “Brain fog”, lack of concentration, fatigue, depression, irritability, anxiety, headache, and nausea. These range from brain fog, with a mean intensity of 7.6 out of a maximum of 10, to nausea, with a mean intensity of 4.8. The mean durations of these symptoms were reported to range from 2.8 to 5 days (mean = 4.4 days). Somewhat surprising to us, and which will require a slight modification of our protocol, is that the latency of onset of these eight POIS symptoms ranged from 2.2 to 3.7 hours (mean = 3.1 hours). We now will continue our recordings in the laboratory for at least 4 hours post-orgasm, as the latency for the POIS symptoms is evidently longer than we were led to believe originally. It is clear from this summary table that POIS is reliably characterized by a highly distressing cognitive and physical state that starts within a few hours after orgasm and persists for days. We plan to publish these findings, which we trust will raise awareness of this distressing condition. We hope that the vagal tone component of our research will reliably shed light on the cause, and suggest therapy, for POIS. We already are seeing, as presented in our progress report submitted December 13, 2015, that after orgasm, the HRV index is relatively low compared to resting and exercise. If our continuing research shows this to be a reliable phenomenon, it suggests that procedures designed to reduce vagal tone may be effective in counteracting or preventing POIS symptoms."
(http://i858.photobucket.com/albums/ab143/demografx/250F8183-4E6E-4FB0-B7D2-FF80305E352A.png)
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Question - given the newest report and the abundance of test subjects / guinea pigs; 1. Has the vagus nerve simulation devices been used on anyone yet?
and more importantly, 2: Was there any success rate in using the vagus simulation devices?
Very good question, but there's nothing about it in this report.
I personally think that hormonal matters should also be studied.
-
I'll submit questions you have here to NORD.
Daveman and I only know what you see above.
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It seems they didn't ask the respondents whether they get symptoms after Nocturnal Emission or not. This is a big mistake. I think I don't get POIS after NE. I'm going to experiment it, and if that's true, it shows my POIS is different from the men who have POIS after NE.
There may be a different cause in men who are not affected by NE.
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On Apr 29, 2016, at 7:42 AM, Jacqueline Kraska/NORD wrote:
Hi demo,
Sorry it has taken some time but please find attached the public section of the 3rd scientific report, which was the same as provided in the section 2 for our reviewers called "accomplishments"...
All the best,
Jacqui
--
Jacqueline Kraska
Research Programs Manager
National Organization for Rare Disorders
Basically, this public section of the third report appears to me as the summary of the data recovered from the survey that has been done here on poiscenter, at the beginning of the study. Nothing really new for any POIS sufferer, but it will however become, when published, a solid ground from which other researchers will be able to better understand what POIS is. What one guy says in the office of the doctor is not really enough. Even this team, that has been showing interest in POIS for some time, wasn't aware that for many symptoms, there was an onset delay. You and I obviously knows that, but this is no evidence for researchers and doctors.
I think there will be much disappointment for those who had high expectations for this 3rd report, though.
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I think there will be much disappointment for those who had high expectations for this 3rd report, though.
I agree, Quantum.
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After 23 years of CFS AND POIS I used to think that next CFS study will be it.
Hundreds of studies and millions spent in CFS have put together a wealth of knowledge.
I thnk that CFS research is just starting to hit critical mass and the level of funding it deserves.
The good news is that in my opinion POIS will benefit greatly from the outcome of CFS research as several other dysautonomia disorders. So the end of the suffering for POIS is also very, very near. We are almost there. 3 to 5 years is my take
We have great reason to be optimistic. I however do not have great expectations from the NORD research yet. They are just starting to look into a very complex illnes spectrum. Of course I would love to be proved wrong by NORD anytime.
But realistically in my opinion it is far more likely that the cure for POiS will come from CFS research in the next few years than our valiant first research. I think research on POIS is long overdue and I'm happy and proud to see it's starting.
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Thank you for your thoughtful assessment, mrraba!
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Do you guys think - in either your laymen or formalized educated POV - that POIS will be 'curable', or for a better suitable word of progressive insights - be treatable by the end of the decade? I'm really looking for at least 2020 to have some line of formalized treatment.
...
Hi Pentrazemine.
I guess we are not that rare. The number of forum members are rising. By the way, how many members we have here? I guess Demo has the number.
While I'm seeing the Rutgers study is very slow, I think Dr. Komisauruk is not taking this research seriously, the third report was a joke.
How about alternative medicine, like energy medicine? Do you think they work? After all if science is disappointing then maybe we should go for pseudoscience ;-)
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...how many members we have here? I guess Demo has the number.
About 600.
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...how many members we have here? I guess Demo has the number.
About 600.
Thank you Demo.
Now I think we are very rare.
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Now I think we are very rare.
(http://i858.photobucket.com/albums/ab143/demografx/76307032-8072-45E9-87FB-5DCF2473E72E.jpg)
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(http://i858.photobucket.com/albums/ab143/demografx/36E595AF-3AC8-447A-BF7D-33F39118CB63.jpg)
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Sorry, zeynali, I'm in a silly mood :)
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Prancer's here!
:)
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Do you guys think - in either your laymen or formalized educated POV - that POIS will be 'curable', or for a better suitable word of progressive insights - be treatable by the end of the decade? I'm really looking for at least 2020 to have some line of formalized treatment.
...
Hi Pentrazemine.
I guess we are not that rare. The number of forum members are rising. By the way, how many members we have here? I guess Demo has the number.
While I'm seeing the Rutgers study is very slow, I think Dr. Komisauruk is not taking this research seriously, the third report was a joke.
How about alternative medicine, like energy medicine? Do you think they work? After all if science is disappointing then maybe we should go for pseudoscience ;-)
Hi Pentrazemine, and Zeynali,
It is not that Dr Kamisaruk take this study lightly - he must strictly follow the research protocol that has been accepted by NORD before the study began. Remember that what we see is the public section of the interim report, meaning that NORD's MAC has received much more data and results than what is in this public report we have access to, but these won't be revealed before the final article - like in a movie, they will keep the best punches for the final scene.
My own opinion is that the detailed report of the effects of VNS on POIS and what have been learned from the fMRI will be revealed in the final article only. I think they will also share in that final article the survey data, analyze them, in more depth than in the 3rd interim report, and they will also present the results of the fMRI, and also if their hypothesis, that POIS may be or may include vagal dystonia, seems correct or not, considering the results they had in the study, and how they interpret those results. That is pretty much what I expect from the study, with detailed graphs and results for each part, like detailed account of what type of VNS has been used, with what protocol, and what kind of relief was seen in the POIS sufferers who took part in the study, measured effect on HRV, and at what percentage symptoms has been relieved by VNS, and so on, and what type of results have been found in the before/after fMRI, and how they interpret the differences they have seen with this imaging technique, and so on.
Hope this will help everyone to wait until the final article is released, somewhere at the end of the year, but most probably in early 2017. Even if some hints from the fMRI results or VNS treatments could be given as appetizers in the 4th report in September, I think the main course will definitively be the final article.
--
POIS is a rare condition, so research for it will not go fast. It is not a disease like cancer, diabetes, depression, or cardiovascular problems, that attracts billions of dollars of research found each years. Remember that health is a "business" like any other. Investors want a good ROI (Return on Investment) for the bucks they put in. If you have the choice between investing in a very rare condition, or investing in a condition that has epidemic proportion, like diabetes, or cancer, what would YOU do with your money? Same thing for the Government - If you pay for a public network of health services - hospitals, clinics, .... - you will invest funds where they will help the most people you have to provide care for, in order to lower your health system budget. In many cases, follow the money, and you will find answers to many questions.
However, and that is our chance, their is other kind of "investors" for rare disorders. First, those who are suffering from this rare disorder, and that is what made this current Rutgers study possible. Also, their is interest from the part of world-class specialists of a very specific field - in this case, sexual dysfunctions. If you are a world-class researcher in this field, it may become redundant to make yet another study on premature ejaculation - there are already so many! There comes a time that you, or some of your PhD candidates, want something fresh, some uncharted territory to explore, and take a chance at becoming the first to make a breakthrough in a rare condition. That is an "investment" in a career path. So, prominent figures like Dr Waldinger or Dr Kamisaruk, and the team surrounding them, will be interested in conducting studies about a rare disorder like POIS.
If you feel that this is not enough, don't forget that POIS can benefit from research on other health problems. MrRaba has already cited research done for CFS/ME, that could lead to interesting results for POIS. Personally, all that I have learned about the IDO and TDO enzymes upregulating in immune reactions, that I believe explains a part of what causes POIS, come from millions of dollars of researches done for two "blockbusters" conditions, cancer and depression. Those two has attracted many millions of dollars of research money on the study of the kynurenine pathways, something impossible for a rare condition. Just check the amazing numbers of study about this that can be found on NCBI/PUBMED for that, 7027 full-text journal articles if you type "IDO", over 4000 if you type "kynurenine". And this is not a mainstream subject in research for those 2 conditions. POIS can benefit from what is learned in studies for other conditions, so count on that too.
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Thank you, Quantum, for clarifying our progress in POIS research!
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WOW Quantum. Lots of food for thought! Thanks for the excellent perspective, and one that I think is quite reasonable.
It's hard not to be overly optimistic, but I think your "summary" is down to Earth yet consoling.
I feel that whatever the outcome, light will have to have been shed on this very real, although potentially rare disorder by this study and the degree of expertise, vision and understanding that Dr. Komisuruk posseses.
Even if it is nothing as he may have originally beleived, I know that his eyes will have been well opened to this disorder by this study.
I mentioned "potentially rare disorder" above. It's my beleif that it is much more prevelent than is thought. I know that it took me several years to understand that sex was effecting my state of health. I know there are many of us who required severl years to understand that what we feel after sex is not normal.
I believe that many people who suffer from depression for instance may well be triggered by orgasm without really knowing it. There may be many of us who have a low level version of POIS that is insidiously present but never recognized. If something like that should come to light, who knows, we may not be so rare after all.... That also could change our status in the "medical business".
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You're right, Daveman!
1. We - (and our doctors!) - WILL all understand POIS better - regardless of study outcome
2. It took me - and, I'm sure, *many* other POISers - YEARS to connect the dots between sex-and-symptoms
3. Depression - for me & others here - was thought only treatable/curable with psychiatry and psych meds -- until we realized that - sometimes - sex was the culprit!
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The report was obviously not so exiting for most but I trust that dr. Komisaruk, prof. Nan Wise and colleagues are working hard and progressing behind the scenes. After all the final report is what really counts and probably will also take much longer than expected before being published.
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Thanks for your observation, less_fogged!
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Very disappointing! :'( May I know the estimated release date of the movie (final report)?
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"The movie"! Haha
Raj, you're right, I liked the book better! ;D
Report 4 is due September 18, 2016
Publication date? After Report 4...
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The #1 worst symptom of POIS, in my humble opinion:
(http://i858.photobucket.com/albums/ab143/demografx/663F5322-90A7-4CD9-9B2A-C4F78F061067.jpg)
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"The movie"! Haha
Raj, you're right, I liked the book better! ;D
Report 4 is due September 18, 2016
Publication date? After Report 4...
Hey Demo,
Can we get a lead time from Report 4 to publication from the Rutgers team?
Thanks FB
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"The movie"! Haha
Raj, you're right, I liked the book better! ;D
Report 4 is due September 18, 2016
Publication date? After Report 4...
Hey Demo,
Can we get a lead time from Report 4 to publication from the Rutgers team?
Thanks FB
I don't think it's possible to predict when any one publication will accept/reject publishing the study.
Hopefully in early 2017.
The appeal to a publisher? POIS is still relatively obscure, but Dr Komisaruk has an excellent reputation.
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[from Dr Komisaruk:]..."It suggests that procedures designed to reduce vagal tone may be effective in counteracting or preventing POIS symptoms."
Hopeful point and we must be sure he didn't write this for nothing.
I'm sure he wrote this intentionally.
It has been his main study thesis.
To me, it is exciting that Dr Komisaruk - a world renowned scientist and orgasm expert - has a hypothesis already as to what may cure or help POIS!
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Folks, that time of year comes again when we need to muster funds for the hosting service. It is $250/yr. So we need 5 people (4 plus me) to put $50 each, or some such combination. More people, less per person.
From Daveman: "It has to be paid in one payment, so the cleanest is each donor deposits to my PayPal account and I pay the hosting service. So let's see first if we can muster up enough between us, and then once we have the smount required I'll PM the account info to those generous donors. And pay the bill."
We can't stay open without the contributions.
Just post "I'm in" and Daveman will PM you the details.
THANK YOU IN ADVANCE!
demo
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Folks, that time of year comes again when we need to muster funds for the hosting service. It is $250/yr.
Wow. I'm shocked about the differences in price in different countries. A few month ago I got a one year hosting service in Iran with the cost about $1. And the service is good. You can visit my website: www.rayanebartar.ir
I wonder if it's possible to host POIScenter, from an Iranian company, so we pay a dollar or two, and I can do that.
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Thanks, zeynali!
I will ask Daveman.
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Thanks, zeynali!
I will ask Daveman.
You're welcome.
I searched "Free Web Hosting" on Google and I found out that there are many free or cheap web hosting services all around the world. Although I don't know if they are reliable. I asked on Quora, and I'm reading answers.
Also someone on Quora recommended this: https://hostripples.com/
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zeynali, Daveman and I chatted about your post and we decided:
"Thanks, zeynali, but a change isn't as easy as just changing (SEO and all).
It should all be worth changing in the long run, but perhaps we should prepare for a change before next year's renewal."
So, guys, please contribute/donate!
$50 from 4 forum members would be ideal.
Many thanks,
demo
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Folks, that time of year comes again when we need to muster funds for the hosting service. It is $250/yr. So we need 5 people (4 plus me) to put $50 each, or some such combination. More people, less per person.
From Daveman: "It has to be paid in one payment, so the cleanest is each donor deposits to my PayPal account and I pay the hosting service. So let's see first if we can muster up enough between us, and then once we have the smount required I'll PM the account info to those generous donors. And pay the bill."
We can't stay open without the contributions.
Just post "I'm in" and Daveman will PM you the details.
THANK YOU IN ADVANCE!
demo
I'm In
Colm
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Thanks, Colm!
-
im in
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Thanks, CP2!
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I'm in
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Thanks, Quantum!
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I am in
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Thanks, vik1379!
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I personally think that hormonal matters should also be studied.
I agree, but it's not directly being addressed by this particular group of researchers @ Rutgers in this first study.
Our $34,000 grant can only cover so much (a limited amount of) medical territory.
But there are known relationships between hormones and the vagus nerve -- the latter being the focus of the current study. I think there is a good reference for that - please check our "Testosterone" thread. The link to this specific post (#161):
http://poiscenter.com/forums/index.php?topic=17.msg17983#msg17983
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I am also IN for contributing to the server cost.
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Thanks, joelawerence!
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Let's all say...THANK YOU...for contributing to our
hosting fees!
COLM
Quantum
certainlypois2
vik1379
joelawerence
(http://i858.photobucket.com/albums/ab143/demografx/7A1C17C2-AFD5-4BD3-A0E2-BA90E9C005E4.gif)
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Keep an eye on everyone demografx!
(http://i858.photobucket.com/albums/ab143/demografx/29D0F943-11C1-48F5-809A-1ACDF76931BA.gif)
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Do you guys think - in either your laymen or formalized educated POV - that POIS will be 'curable', or for a better suitable word of progressive insights - be treatable by the end of the decade? I'm really looking for at least 2020 to have some line of formalized treatment.
...
POIS is a rare condition, so research for it will not go fast. It is not a disease like cancer, diabetes, depression, or cardiovascular problems, that attracts billions of dollars of research found each years. Remember that health is a "business" like any other. Investors want a good ROI (Return on Investment) for the bucks they put in. If you have the choice between investing in a very rare condition, or investing in a condition that has epidemic proportion, like diabetes, or cancer, what would YOU do with your money? Same thing for the Government - If you pay for a public network of health services - hospitals, clinics, .... - you will invest funds where they will help the most people you have to provide care for, in order to lower your health system budget. In many cases, follow the money, and you will find answers to many questions.
However, and that is our chance, their is other kind of "investors" for rare disorders. First, those who are suffering from this rare disorder, and that is what made this current Rutgers study possible. Also, their is interest from the part of world-class specialists of a very specific field - in this case, sexual dysfunctions. If you are a world-class researcher in this field, it may become redundant to make yet another study on premature ejaculation - there are already so many! There comes a time that you, or some of your PhD candidates, want something fresh, some uncharted territory to explore, and take a chance at becoming the first to make a breakthrough in a rare condition. That is an "investment" in a career path. So, prominent figures like Dr Waldinger or Dr Kamisaruk, and the team surrounding them, will be interested in conducting studies about a rare disorder like POIS.
If you feel that this is not enough, don't forget that POIS can benefit from research on other health problems. MrRaba has already cited research done for CFS/ME, that could lead to interesting results for POIS. Personally, all that I have learned about the IDO and TDO enzymes upregulating in immune reactions, that I believe explains a part of what causes POIS, come from millions of dollars of researches done for two "blockbusters" conditions, cancer and depression. Those two has attracted many millions of dollars of research money on the study of the kynurenine pathways, something impossible for a rare condition. Just check the amazing numbers of study about this that can be found on NCBI/PUBMED for that, 7027 full-text journal articles if you type "IDO", over 4000 if you type "kynurenine". And this is not a mainstream subject in research for those 2 conditions. POIS can benefit from what is learned in studies for other conditions, so count on that too.
It doesn't matter. You have rarer diseases and (or) congenital diseases with, presumably, a far less and selectively small amount of people that get more spotlight and research than our syndrome; there are millions - I repeat: millions - of doctors and (or) medical researchers / scientists world-wide. You would think 14 years would be more than enough time to mathematically increases the chances of getting at least 20 scientists to take interest, let alone just one's you can count on one hand.
14 years since its formal inception and just what? 1-3 researchers out of millions of others? Why we have to rely on a forum to actually discuss treatments through the dangerous, informal process of Trial and Error? It doesn't matter if it was just 1 case. It makes absolutely no sense.
For something as medically unorthodox and original in premise - people suffering from neurological and systemic changes in their body post-orgasm and this is STILL not well talked about? Are you effing kidding me? Even Dr. House himself would salivate at the unique originality and mysteriousness of this condition with much delight.
I'm sorry but I don't buy the money / resource excuse just as much as I don't buy the capital of scientific curiosity as a form of financial value; this is something that should've been long studied and researched on since the early 00's. Hand in hand with Chronic Fatigue Syndrome and Dysautonomia.
By the way and how slow research is going with the inexplicable lack of spotlight - I can't conceivably see this being treated until mid-to-late of the 21st century, and that's being generous. And quite frankly, as a 44 year old I neither have the time nor the inclination anymore to bother with a cure if we have to wait that long. We still can't cure CFS effectively and we spend millions if not billions on that. Just imagine how much we spend on this 'POIS' and just imagine the chronology. Laughable.
Waldinger's vagus nerve theory is a shot in the dark but it's our golden ticket to possible success - if his theory later proves to be successful in the next year or so that's our chance; but if nothing suffices out of that theory in particular...we're literally back at square one. And no, forum theories don't count. Because there's simply too little researchers egging in on this thing and I have extreme doubt that it'll get cured until most of us are either in our Seniors or dead. He's literally our only hope. without him or the fate of his research, I cannot conceivably see this thing being cured until the later half of the end of the century.
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"Waldinger's vagus nerve theory"??
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Sorry, I meant . Komisaruk. Regardless, the fact that you're only responding my post to that little tidbit and not to the general subject of my critiquing is a sign that you know I'm right. We're not going to be alive when this thing gets formally treated, or perhaps, we will be but many of us will simply be too old to bother with it. I would bet all of my life savings that this won't be formally treated until past the 2050's decade, and that's being generous given it's been already 14 years and doctors still - for whatever bizarre reason - don't know about it, even behind the desk let alone behind the doctor's office. You're all great and intelligent people here, no doubt, but you need to be realistic about this. I don't want to discuss this on a forum. I want to discuss this in an actual doctor's office with actual M.D's and not Laymen. If Laymen have more exciting theories and conjure more ad hoc knowledge on a condition than actual doctors after 14 years...you know something is terribly, terribly wrong.
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Sorry, I meant . Komisaruk. Regardless, the fact that you're only responding my post to that little tidbit and not to the general subject of my critiquing is a sign that you know I'm right. We're not going to be alive when this thing gets formally treated, or perhaps, we will be but many of us will simply be too old to bother with it. I would bet all of my life savings that this won't be formally treated until past the 2050's decade, and that's being generous given it's been already 14 years and doctors still - for whatever bizarre reason - don't know about it, even behind the desk let alone behind the doctor's office. You're all great and intelligent people here, no doubt, but you need to be realistic about this. I don't want to discuss this on a forum. I want to discuss this in an actual doctor's office with actual M.D's and not Laymen. If Laymen have more exciting theories and conjure more ad hoc knowledge on a condition than actual doctors after 14 years...you know something is terribly, terribly wrong.
Hi Pentrazemine,
I take your point but perhaps I can try and share something positive in reflection of reading some of your post. Me personally I am going through a very difficult time with POIS at the moment and can't handle the stress at work. It is so tough. Anyhow perhaps there is a positive way to look at this. There has only been a couple of completed POIS studies from Waldinger. I don't think we can count Dr Dexters and also Goldmeiers as they are shallow insights and only observational. Waldinger's first one was fruitless as well really and only observational. However in my limited opinion his papers of desensitisation is a break through, although only useful for people who have a POIS type which is related to IgE immune response. So we actually have quite a high progress rate (50% = one step forward).
The problem with many conditions is being able to catch when something is going wrong until it is too late as they don't know the trigger is. For POIS we can trigger this condition whenever we choose. So this is great in terms of finding a comparable state. Some medical conditions are happening all the time and whats causing it can be thus harder to find in some ways. For example, we have thousands of IgG markers in our bodies and some people do not have any health problems with them but other people do.
As I have recently mentioned and believed for a long time that the O in POIS in incorrect and it should be called SIS (Semen Illness Syndrome)! Why? Because I know I can trigger POIS without shooting and thus I strongly believe orgasm is not the cause.
When I take an ACH blocker (Mytelase or mestinon) it can stimulate semen production, especially if I take in the morning (so I don't that anymore). There is absolutely no sexual arousal is this case. The strange thing is that the only time I have ever been what I believe to experience no POIS was when taking Mytelase. So it a double edged sword. But surely this discovery is meaningful. To me it is clear that ACh reduction is one of the biggest causes of POIS symptoms (well at least my type of POIS). I was a little bit disappointed that neither Dr K or Waldinger confirmed receipt of my mail explaining this discovery.
We know there was an individual who went to great lengths to have parts removed from his body to try to stop POIS. I do know from speaking with him not too long ago that it didn't work, despite the the youtube video which paints a totally different story. Well at least we know that it's not worth doing what he did, especially the removal of his testes! So why do I mention this? Because after having all that surgery he still got POIS. I do know that the procedure that he had done to remove the prostate was called a TURP. This does not remove the prostate fully. It cuts/burns sections of it away. What this means is that the prostate will grow back and also if any not removed it could still produce fluid. I know my my Mytelase experience that it only takes the tiniest bit of semen to trigger POIS. The first day is not the same as if having full sex but it still escalates to the same point soon after a day or two.
So if the antigen is in the prostate fluid then the only way (not absolute) to potentially stop the cause would be to have the prostate completely removed. THIS IS AN EXTREMELY SERIOUS OPERATION. In the not so distant past it was known to be when you had prostate cancer that the cure (the operation) was worse than the disease. Sexual function gone due to unknown nerves being cut and incontinence. The good news is that it has come a long way in the last ten years or so. There is a doctor in the US who developed a new technical and innovative procedure and is having amazing results. The procedure is called "laparoscopic nerve sparing radical prostatectomy". I saw on internet that some guy ran marathon 6 months after having this operation!
So are you going to be able to get this done now. NO. Why? Because no-one can prove scientifically that POIS exists. Thus no way to separate the genuine from the crazy or desperate (I'm all these categories at the moment). I would be surprised if Dr K can't prove that POIS exists. He has already indicated that there are changes in heart rate variability. There is also Waldinger's recent study which I would have thought would be finished by now:
http://poiscenter.com/forums/index.php?topic=2099.msg19041#msg19041
If either proves that the antigen is in the prostate then that would be another breakthrough.
So, best case scenario; both Dr K and Waldinger prove that POIS exists. Waldinger could any time cos no-one knows what the hell he is doing. Dr K could prove PIOS exists by March 2017. My logic here is that study is completed by end of September as planned then needs to peer reviewed. Thats' just ten months away.
For me if we can get to this point with just one of them with the medical proof then I would use this to try and get the "laparoscopic nerve sparing radical prostatectomy". I want this done even if there was a chance that it would not stop POIS. Why? Because I know from researching that having this operation would prevent the strong sexual urge which comes from the prostate getting very full. Sex is apparently less satisfying in a sense but still can be enjoyable (for a normal person). One of the problems I have is that cardio exercise fills up my prostate so I don't do any. At least if I had this op then I could go running and not feel uncontrollably frustrated a few hours afterwards.
I hope this all doesn't seem to extreme. I have had severe POIS for 27 years now.
Oh, yes and one last things; perhaps the tVNS nerve stimulator can provide considerable relief! Getting the damn thing could be the next challenge though.
FB
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I'll submit questions you have here to NORD.
Daveman and I only know what you see above.
Hi Demo,
Did you get a response?
FB
-
Sorry, I meant . Komisaruk. Regardless, the fact that you're only responding my post to that little tidbit and not to the general subject of my critiquing is a sign that you know I'm right. We're not going to be alive when this thing gets formally treated, or perhaps, we will be but many of us will simply be too old to bother with it. I would bet all of my life savings that this won't be formally treated until past the 2050's decade, and that's being generous given it's been already 14 years and doctors still - for whatever bizarre reason - don't know about it, even behind the desk let alone behind the doctor's office. You're all great and intelligent people here, no doubt, but you need to be realistic about this. I don't want to discuss this on a forum. I want to discuss this in an actual doctor's office with actual M.D's and not Laymen. If Laymen have more exciting theories and conjure more ad hoc knowledge on a condition than actual doctors after 14 years...you know something is terribly, terribly wrong.
Hi Pentrazemine,
I take your point but perhaps I can try and share something positive in reflection of reading some of your post. Me personally I am going through a very difficult time with POIS at the moment and can't handle the stress at work. It is so tough. Anyhow perhaps there is a positive way to look at this. There has only been a couple of completed POIS studies from Waldinger. I don't think we can count Dr Dexters and also Goldmeiers as they are shallow insights and only observational. Waldinger's first one was fruitless as well really and only observational. However in my limited opinion his papers of desensitisation is a break through, although only useful for people who have a POIS type which is related to IgE immune response. So we actually have quite a high progress rate (50% = one step forward).
The problem with many conditions is being able to catch when something is going wrong until it is too late as they don't know the trigger is. For POIS we can trigger this condition whenever we choose. So this is great in terms of finding a comparable state. Some medical conditions are happening all the time and whats causing it can be thus harder to find in some ways. For example, we have thousands of IgG markers in our bodies and some people do not have any health problems with them but other people do.
As I have recently mentioned and believed for a long time that the O in POIS in incorrect and it should be called SIS (Semen Illness Syndrome)! Why? Because I know I can trigger POIS without shooting and thus I strongly believe orgasm is not the cause.
When I take an ACH blocker (Mytelase or mestinon) it can stimulate semen production, especially if I take in the morning (so I don't that anymore). There is absolutely no sexual arousal is this case. The strange thing is that the only time I have ever been what I believe to experience no POIS was when taking Mytelase. So it a double edged sword. But surely this discovery is meaningful. To me it is clear that ACh reduction is one of the biggest causes of POIS symptoms (well at least my type of POIS). I was a little bit disappointed that neither Dr K or Waldinger confirmed receipt of my mail explaining this discovery.
We know there was an individual who went to great lengths to have parts removed from his body to try to stop POIS. I do know from speaking with him not too long ago that it didn't work, despite the the youtube video which paints a totally different story. Well at least we know that it's not worth doing what he did, especially the removal of his testes! So why do I mention this? Because after having all that surgery he still got POIS. I do know that the procedure that he had done to remove the prostate was called a TURP. This does not remove the prostate fully. It cuts/burns sections of it away. What this means is that the prostate will grow back and also if any not removed it could still produce fluid. I know my my Mytelase experience that it only takes the tiniest bit of semen to trigger POIS. The first day is not the same as if having full sex but it still escalates to the same point soon after a day or two.
So if the antigen is in the prostate fluid then the only way (not absolute) to potentially stop the cause would be to have the prostate completely removed. THIS IS AN EXTREMELY SERIOUS OPERATION. In the not so distant past it was known to be when you had prostate cancer that the cure (the operation) was worse than the disease. Sexual function gone due to unknown nerves being cut and incontinence. The good news is that it has come a long way in the last ten years or so. There is a doctor in the US who developed a new technical and innovative procedure and is having amazing results. The procedure is called "laparoscopic nerve sparing radical prostatectomy". I saw on internet that some guy ran marathon 6 months after having this operation!
So are you going to be able to get this done now. NO. Why? Because no-one can prove scientifically that POIS exists. Thus no way to separate the genuine from the crazy or desperate (I'm all these categories at the moment). I would be surprised if Dr K can't prove that POIS exists. He has already indicated that there are changes in heart rate variability. There is also Waldinger's recent study which I would have thought would be finished by now:
http://poiscenter.com/forums/index.php?topic=2099.msg19041#msg19041
If either proves that the antigen is in the prostate then that would be another breakthrough.
So, best case scenario; both Dr K and Waldinger prove that POIS exists. Waldinger could any time cos no-one knows what the hell he is doing. Dr K could prove PIOS exists by March 2017. My logic here is that study is completed by end of September as planned then needs to peer reviewed. Thats' just ten months away.
For me if we can get to this point with just one of them with the medical proof then I would use this to try and get the "laparoscopic nerve sparing radical prostatectomy". I want this done even if there was a chance that it would not stop POIS. Why? Because I know from researching that having this operation would prevent the strong sexual urge which comes from the prostate getting very full. Sex is apparently less satisfying in a sense but still can be enjoyable (for a normal person). One of the problems I have is that cardio exercise fills up my prostate so I don't do any. At least if I had this op then I could go running and not feel uncontrollably frustrated a few hours afterwards.
I hope this all doesn't seem to extreme. I have had severe POIS for 27 years now.
Oh, yes and one last things; perhaps the tVNS nerve stimulator can provide considerable relief! Getting the damn thing could be the next challenge though.
FB
It's funny you should mention changing the name from POIS to SIS - I was actually in thoughts of maybe changing it to Post Orgasmic Illness Spectrum, and not even Syndrome; many people's Etiologies are simply diverse and different, and like you said, the 'trigger' is the same but the mechanisms are versatile and vary in nature. Some people need X drug while others need Y drug, while another person needs Z and Y, etc. And like your opinion, I also don't believe this 'syndrome' is caused by orgasm - but by the stuff / biochemical synthesis inside the seminal fluid and (or) semen. At least, this goes for OUR particular case. Some people's 'strain' are caused immunologically, some are more inflammatory, some might be neurological, etc.
My POIS is strictly Neurological in terms of Symptoms - not cause. Unlike most people here, I suffer absolutely zero physical symptoms, I have no fatigue. But I suffer from debilitating cognitive / behavioral deficits and my vision gets blurry and photosensitive.
And unlike most people here, my symptoms last entirely for 1 Month and not 1 week. It spontaneously disappears after 1 month. I also get POIS symptoms proportionate to how sick I am. Ie: the severity of my sickness [ie: cold, fever, etc] is proportionate to the severity of my symptoms. The more sick / immune compromised I am - the more I get the symptoms. How often do you see someone with my 'strain' on this forum? You see, being anecdotal, this is also the problem with finding the cause. It's malleable.
Also, I don't know if this is the user you're referring to but a guy named Animus back in 2011 had the TARP removal, cauterized his ejaculatory ducts, had his seminal vesicles removed and he's enjoying / enjoyed 100% free symptoms. So surgically, it's a possible solution but to find a doctor willing to mutilate you to alleviate your suffering is extremely improbable.
Even if POIS were hypothetically 'legitimized' by the 2017 year given the stubbornness of bureaucracy and epistemology transitioning, I doubt doctors will still know much about it unless the big-time Media got involved and (or) some people spent their days throwing POIS Fliers across Hospital lobby's all over their country. I'm surprised no one has done the latter yet.
And given, like you said, the nerve fragility of the nature of the operation I don't think doctors would be too helpful in the mutilation of your nether-regions for an already ambiguous, yet simultaneously, proven condition. Even after 14 years, by doctor's and researchers eyes, this is still too 'new' of a condition to take such risks. I Live in New York City and I've went to maybe 6 Urologists and they've all rejected both my condition and my surgical desires.
So for you, surgery at the point of recognition / legitimacy should still not be on the tables. But consider this a blessing in disguise for alternative treatments that they can use w/o bodily mutilation.
Whoever can synthesize a drug that can destroy / eradicate seminal fluid production wins my heart...because for some of us a drug like that could be our golden ticket.
It's also equally mind boggling that researchers can't just set up grand openings for POIS sufferers all across the country and pool as much as they can and emulate the expositions of their illnesses seen here on this forum. Like I said, by the way research is going and how little doctors still don't know about, I'm still placing my money that this is something that won't be cured until the later-half of the century. The etiology quantification is too spread out / diversified amongst researchers..there's no over-arching organization, there's no proper, formalized Epistemology. This is more proto-science than an actual science.
at least the sufferers who are kids in their Teens to 20's have a chance of a cure by the time they reach my age - mid 40's. lulz.
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I'll submit questions you have here to NORD.
Daveman and I only know what you see above.
Hi Demo,
Did you get a response?
FB
I went directly to Dr K, who replied that he promises to reply but that he cannot respond at the moment and that he will explain why.
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Hi Demo,
I hope you can help me with another question; when the study is completed at the end of September. It I expect will need to be peer review before being published. When the study is complete prior to peer review will the 12 participators who used the tVNS devices be allowed to share their experiences?
I'm looking forward to hearing about this almost as much as the publishing of the final paper. If you don't could you clarify with Prof K?
I hope this is not too much to ask!
Thanks FloppyB
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Also, I don't know if this is the user you're referring to but a guy named Animus back in 2011 had the TARP removal, cauterized his ejaculatory ducts, had his seminal vesicles removed and he's enjoying / enjoyed 100% free symptoms. So surgically, it's a possible solution but to find a doctor willing to mutilate you to alleviate your suffering is extremely improbable.
Let's be clear here Animus has never had a 100% POIS free condition despite what that video states. That video should be taken off the internet because it painting a very distorted reality. I can't discuss the details of I how know due to confidentiality really. From what I know the "whole" story is very sad one.
I think you must mean TURP? I was not aware that he had his ejaculatory ducts cauterized. Where did you get this information?
Thanks FB
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(http://i858.photobucket.com/albums/ab143/demografx/6F50B65B-B4F9-42D1-AE1C-358DC1B6A5F1.png.jpeg)
National Organization for Rare Disorders
On May 25, 2016, at 7:54 AM, Jacqueline Kraska/NORD wrote:
Hi Demo,
I've attached a document that outlines the role of sponsors [Rutgers University is the sponsor of our POIS study] and PI's [ Dr Komisaruk is our PI (Principal Investigator) ] - just in case it's helpful:
BW
Jacqui
Hope you can all read this PDF ok...
demo
(http://i858.photobucket.com/albums/ab143/demografx/10C7070F-E732-4774-8730-7DD28D84A7A8_1.png)
(http://i858.photobucket.com/albums/ab143/demografx/6C7AA44A-5CF5-4358-8722-C31F37A7BD0C.jpeg)
This means that the sponsor is essentially responsible for all
operational aspects of the clinical trials it sponsors.
(http://i858.photobucket.com/albums/ab143/demografx/05D2F607-5EB0-4161-93E4-FB301FB59D10.jpeg)
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Re: above attachment from NORD:
On May 25, 2016, at 6:04 PM, Jacqueline Kraska/NORD wrote:
Hi Demo,
The same roles and responsibilities for PI and Sponsor apply to all clinical research, whether clinical trial or not. The conditions that are listed purely regarding trials are not applicable though.
Kind regards,
Jacqui
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On May 26, 2016, at 11:31 AM, Jacqui Kraska/NORD wrote:
Hi demo, I think you can ignore as regardless of drug, device, investigation the roles and responsibilities remain the same.
BW
Jacqui
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Hi Demo,
I hope you can help me with another question; when the study is completed at the end of September. It I expect will need to be peer review before being published. When the study is complete prior to peer review will the 12 participators who used the tVNS devices be allowed to share their experiences?
I'm looking forward to hearing about this almost as much as the publishing of the final paper. If you don't could you clarify with Prof K?
I hope this is not too much to ask!
Thanks FloppyB
FB, I forwarded your post to Dr Komisaruk, now awaiting his reply.
Excellent question.
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(http://i858.photobucket.com/albums/ab143/demografx/F92D9C16-9D95-4BE3-95D4-82F56A7C6BEA.jpg)
(From a NORD [Washington, D.C.] legislative tracking advisory in my mailbox today).
They're advocating on behalf of rare disorder groups -- like POIS.
www.rarediseases.org
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(http://i858.photobucket.com/albums/ab143/demografx/5EE68D4B-D636-45D5-8D7C-D0BEBBCF98F8.jpg)
This is NORD's "motto"
It could be our forum's motto as well!
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Hi Demo,
I hope you can help me with another question; when the study is completed at the end of September. It I expect will need to be peer review before being published. When the study is complete prior to peer review will the 12 participators who used the tVNS devices be allowed to share their experiences?
I'm looking forward to hearing about this almost as much as the publishing of the final paper. If you don't could you clarify with Prof K?
I hope this is not too much to ask!
Thanks FloppyB
FB, I forwarded your post to Dr Komisaruk, now awaiting his reply.
Excellent question.
Just my educated guess, but no informational response yet to our previous - and FB's current above - tVNS and fMRI questions...tells me that public confidentiality (vs NORD's MAC - who may well have all the information we're looking for) about our scientific progress is paramount.
If the tVNS and/or fMRI progress info is publicly disclosed now, the "newsworthiness" of Rutgers' POIS study might lose its 'breakthrough' appeal to a scientific publisher (e.g., JAMA) in definitively finding POIS medical-validation as a disorder, and then treatment success of course -- which we are all most anxious to hear about. ASAP!
I witnessed Dr Waldinger in 2011 go through much pre-publication confidentiality anxiety with our forum.
Keep in mind, if word gets out, it could get picked up by magazines, newspapers, TV, radio, or worse, by tabloids. The last thing someone like JAMA wants is...secondhand medical news. And perhaps inaccurate medical news. Not many publications have rigorous editorial standards. So the truth can get sloppy.
That said, I hope I'm wrong. I want us to see what's going on!
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I showed the above post to Jacqueline Kraska @ NORD and she replied interestingly with the following:
On Jun 1, 2016, at 10:04 AM, Jacqueline Kraska wrote:
Hi Demo,
With regards to the posting, I may be interpreting this wrong, but scientific reports are different than publications which would be peer reviewed. The PI does need to provide NORD with a final scientific report to obtain the rest of the funding, which MAC will review for approval. The PI does not necessarily have to publish results.... often research leads on to further research which eventually leads to publications. In order to publish the PI would need to submit to publications and be accepted - that is they think it is worthy etc. of publication.
All the best,
Jacqui
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I showed the above post to Jacqueline Kraska @ NORD and she replied interestingly with the following:
On Jun 1, 2016, at 10:04 AM, Jacqueline Kraska wrote:
Hi Demo,
With regards to the posting, I may be interpreting this wrong, but scientific reports are different than publications which would be peer reviewed. The PI does need to provide NORD with a final scientific report to obtain the rest of the funding, which MAC will review for approval. The PI does not necessarily have to publish results.... often research leads on to further research which eventually leads to publications. In order to publish the PI would need to submit to publications and be accepted - that is they think it is worthy etc. of publication.
All the best,
Jacqui
Very interesting reply. So if the research is not published, what other means is there for us to know the full results?
One positive is that there may be additional funding sanctioned if the NORD team is satisfied with the research.
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Thanks, joelawerence.
Again, only my guess, but I would think that - - instead of a glorious published initial effort -- further research (beyond this current vagal dystonia "opener") is Good News.
Why?
It means someone -- like a tVNS manufacturer -- might fund the next stage...without our hard-earned dollars.
And if this happens it means we're on the right POIS-treatment track!
So if that's true: who's stopping us from responsibly -- see warnings in link -- experimenting with tVNS ourselves and our own doctors?
http://poiscenter.com/forums/index.php?topic=2294.0
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•On Thu, May 26, 2016 at 8:38 PM, demografx wrote:
Jacqui, sorry to keep asking, but is Rutgers' testing of tVNS on POISers considered a "clinical trial" ?
•On Jun 1, 2016, at 12:55 PM, Jacqueline Kraska/NORD wrote:
Hi Demo,
I don't think I ever answered your question here.
Yes it would be considered a clinical trial.
Please see link to WHO's definition: http://www.who.int/topics/clinical_trials/en/ I find the Q&A section helpful.
BW
Jacqui
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Just my educated guess, but no informational response yet to our previous - and FB's current above - tVNS and fMRI questions...tells me that public confidentiality (vs NORD's MAC - who may well have all the information we're looking for) about our scientific progress is paramount.
If the tVNS and/or fMRI progress info is publicly disclosed now, the "newsworthiness" of Rutgers' POIS study might lose its 'breakthrough' appeal to a scientific publisher (e.g., JAMA) in definitively finding POIS medical-validation as a disorder, and then treatment success of course -- which we are all most anxious to hear about. ASAP!
I witnessed Dr Waldinger in 2011 go through much pre-publication confidentiality anxiety with our forum.
Keep in mind, if word gets out, it could get picked up by magazines, newspapers, TV, radio, or worse, by tabloids. The last thing someone like JAMA wants is...secondhand medical news. And perhaps inaccurate medical news. Not many publications have rigorous editorial standards. So the truth can get sloppy.
That said, I hope I'm wrong. I want us to see what's going on!
I fully agree with your words, Demo. Scientific research is very competitive, and have its own culture. Secrecy till publication is part of this culture. There is also a competition between the different academic institutions and research teams, for reputation, hierarchical status, visibility, not unlike competition in the sport world, or political scene, or almost any field of human activity. It would be naive to think that a research on our own rare disorder would escape those cultural rules.
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Thanks, Quantum. Very instructive!
BTW, the worldwide publicity value on "orgasm" seems to be high, judging from all the high profile links (prestige media/publications) we've seen here, perhaps making any "POIS" reporting more valuable.
If nothing else, the public NORD reports could be submitted - by us, even today (I see no restriction!) - to the media, if we want lots of published POIS "news" to show our doctors.
The competitive aspect that you pointed out would I think tie in somehow to all this valuable mass-publicity (post-study results-publication).
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Re-posted from above. Editing included below.
"Thanks, joelawerence.
Again, only my guess, but I would think that - - instead of a glorious published initial effort -- further research (beyond this current vagal dystonia "opener") is Good News.
Why?
It means someone -- like a tVNS manufacturer -- might fund the next stage...without our hard-earned dollars.
And if this happens it means we're on the right POIS-treatment track!
So if that's true: who's stopping us from responsibly -- see warnings in link -- experimenting with tVNS ourselves and our own doctors?
http://poiscenter.com/forums/index.php?topic=2294.0 "
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So if the research is not published...
Dr Komisaruk wrote in NORD's Interim POIS Report #3:
"We plan to publish these [Report 3?] findings, which we trust will raise awareness of this distressing condition."
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Do you guys think - in either your laymen or formalized educated POV - that POIS will be 'curable', or for a better suitable word of progressive insights - be treatable by the end of the decade? I'm really looking for at least 2020 to have some line of formalized treatment.
...
POIS is a rare condition, so research for it will not go fast. It is not a disease like cancer, diabetes, depression, or cardiovascular problems, that attracts billions of dollars of research found each years. Remember that health is a "business" like any other. Investors want a good ROI (Return on Investment) for the bucks they put in. If you have the choice between investing in a very rare condition, or investing in a condition that has epidemic proportion, like diabetes, or cancer, what would YOU do with your money? Same thing for the Government - If you pay for a public network of health services - hospitals, clinics, .... - you will invest funds where they will help the most people you have to provide care for, in order to lower your health system budget. In many cases, follow the money, and you will find answers to many questions.
However, and that is our chance, their is other kind of "investors" for rare disorders. First, those who are suffering from this rare disorder, and that is what made this current Rutgers study possible. Also, their is interest from the part of world-class specialists of a very specific field - in this case, sexual dysfunctions. If you are a world-class researcher in this field, it may become redundant to make yet another study on premature ejaculation - there are already so many! There comes a time that you, or some of your PhD candidates, want something fresh, some uncharted territory to explore, and take a chance at becoming the first to make a breakthrough in a rare condition. That is an "investment" in a career path. So, prominent figures like Dr Waldinger or Dr Kamisaruk, and the team surrounding them, will be interested in conducting studies about a rare disorder like POIS.
If you feel that this is not enough, don't forget that POIS can benefit from research on other health problems. MrRaba has already cited research done for CFS/ME, that could lead to interesting results for POIS. Personally, all that I have learned about the IDO and TDO enzymes upregulating in immune reactions, that I believe explains a part of what causes POIS, come from millions of dollars of researches done for two "blockbusters" conditions, cancer and depression. Those two has attracted many millions of dollars of research money on the study of the kynurenine pathways, something impossible for a rare condition. Just check the amazing numbers of study about this that can be found on NCBI/PUBMED for that, 7027 full-text journal articles if you type "IDO", over 4000 if you type "kynurenine". And this is not a mainstream subject in research for those 2 conditions. POIS can benefit from what is learned in studies for other conditions, so count on that too.
It doesn't matter. You have rarer diseases and (or) congenital diseases with, presumably, a far less and selectively small amount of people that get more spotlight and research than our syndrome; there are millions - I repeat: millions - of doctors and (or) medical researchers / scientists world-wide. You would think 14 years would be more than enough time to mathematically increases the chances of getting at least 20 scientists to take interest, let alone just one's you can count on one hand.
14 years since its formal inception and just what? 1-3 researchers out of millions of others? Why we have to rely on a forum to actually discuss treatments through the dangerous, informal process of Trial and Error? It doesn't matter if it was just 1 case. It makes absolutely no sense.
For something as medically unorthodox and original in premise - people suffering from neurological and systemic changes in their body post-orgasm and this is STILL not well talked about? Are you effing kidding me? Even Dr. House himself would salivate at the unique originality and mysteriousness of this condition with much delight.
I'm sorry but I don't buy the money / resource excuse just as much as I don't buy the capital of scientific curiosity as a form of financial value; this is something that should've been long studied and researched on since the early 00's. Hand in hand with Chronic Fatigue Syndrome and Dysautonomia.
By the way and how slow research is going with the inexplicable lack of spotlight - I can't conceivably see this being treated until mid-to-late of the 21st century, and that's being generous. And quite frankly, as a 44 year old I neither have the time nor the inclination anymore to bother with a cure if we have to wait that long. We still can't cure CFS effectively and we spend millions if not billions on that. Just imagine how much we spend on this 'POIS' and just imagine the chronology. Laughable.
Waldinger's vagus nerve theory is a shot in the dark but it's our golden ticket to possible success - if his theory later proves to be successful in the next year or so that's our chance; but if nothing suffices out of that theory in particular...we're literally back at square one. And no, forum theories don't count. Because there's simply too little researchers egging in on this thing and I have extreme doubt that it'll get cured until most of us are either in our Seniors or dead. He's literally our only hope. without him or the fate of his research, I cannot conceivably see this thing being cured until the later half of the end of the century.
Dont give your money to research in the united states. Health is a business. HERE. elsewhere? sure. but not anywhere in the same ballpark. and in europe doctors have channels of discussion that are generally squashed in this country. if the only doctor to unequivocally do the research paper that got us on the map was overseas, why would anyone think its a good idea to put research money behind an organization in the united states? And also, the christian scare still reigns in this country. Men masturbating for research, in the united states, is going to meet with harsh pushback.
still demografx has gone beyond superman levels to get this to work tho. he has sacrificed more than anyone else here. and for the most part knows what he is doing. =P
formal inception was 2010, not 14 years ago. 6 then? if you want to know why this isnt being talked about everywhere, well..... idk, blame me? im probly the number one person who would know how to utilize the internet to spread awareness like wildfire, but until the dying parent im taking care of passes, im not willing to sacrifice my privacy getting this involved.
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Just received a vacation note from Jacqui Kraska complimenting our forum on being so active. :)
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Hi Pentrazamine,
I hear your frustration, especially in the following:
It's either you guys are really incompetent and aren't trying hard enough or, for whatever conspiratorial reason, scientists just simply aren't interested in a never-before-seen sexual disorder cross-cutting the immune system.
In both cases, it's inexcusable. And by how slow things are going, it'll be countless decades. I'm talking 30-50 years not just a meager 20 years. which, for some of us, is equivalent to no cure at all.
I do not know exactly who are the "you guys" that you think may be incompetent, but anyway, this was not in line with the forum rule of being nice. I would like to open you to the fact that, from my point of you, you are part of those "you guys" that heve POIS as a challenge and do whatever they can to solve the POIS problem and lower its cost on their life. So, what are YOU ready to do in order to help with this ?
I don't mind someone who keeps a healthy criticism, and I agree that pharmaceutical interests won't see POIS as an interesting investment leading to a blockbuster drug. That being said, it is to each and everyone of us to raise awareness and do whatever we can to help progress toward an understanding of POIS, and eventually, relief and treatment. The funds that have been raised by this forum and has led to the current Rutgers study is a tremendous example of what can be done, even if POIS is a rare condition. This will help raising POIS awareness in mainstream medical research as well.
Keeping this forum active, being supportive with other members, is another way to help. A dead forum, or a negative one, won't attract anybody, and won't help the POIS cause at all. See, as a great example, how Demo is positive and have been animating this forum for years, with lively graphics and dedication, despite his own health issues. I can assure you this forum wouldn't have been kept alive if it was't for his and other administrators presence ( Daveman and Stef) I have been founders of another forum, and let me tell you, an inactive forum can die rather quickly, but life attracts life. And, I am sure of it, poiscenter is the best place to go on the net for POIS info and for support, and, or sure, for updates on the current Rutgers study.
Do you have any intention of adding a new POIS video on Youtube, for example, or do anything else ? Any action is welcomed, as small as it may seems.
If you don't stand up, you don't stand a chance!
Hang, on, Pentrazemine. I have been having POIS for about 38 years now, so for at least as long as you have. There are hard times, for sure, but then better times can come. It is sure that I have gotten better these later years, from both what I have learned by myself through the years, and what I have found here since I have found this forum. Even 10% relief is 10% relief, so try and see what could help you ( be consistent and scientific in your approach, and you will find at least some partial relief, among all what have been mentioned by members here... it is to soon to hope for a complete, scientific and definitive solution for now.)
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you're right. i apologize if i sounded rude and not nice, i have nothing but the up-most respect for what you guys have been doing. it's just i'm very frustrated that the odds of a cure are slim to none given there's no incentive in a cure. so this has made me very war-weary. i was just venting on you guys at the expense of my own anger over all of us living with this condition.
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you're right. i apologize if i sounded rude and not nice, i have nothing but the up-most respect for what you guys have been doing. it's just i'm very frustrated that the odds of a cure are slim to none given there's no incentive in a cure. so this has made me very war-weary. i was just venting on you guys at the expense of my own anger over all of us living with this condition.
Thanks for your answer, Pentra !
I wish you to find at least some way to relief your symptoms, and increase your quality of life. Any level of relief is a step in the right direction !
And, above anything, keep the hope alive, quantum leaps happen ! For example, great advances in other medical fields, like gene therapy or stem cells or depression treatment or auto-immune diseases, can lead to something useful for POIS.
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It's either you guys are really incompetent and aren't trying hard enough or, for whatever conspiratorial reason, scientists just simply aren't interested in a never-before-seen sexual disorder cross-cutting the immune system.
In both cases, it's inexcusable. And by how slow things are going, it'll be countless decades. I'm talking 30-50 years not just a meager 20 years. which, for some of us, is equivalent to no cure at all.
...above anything, keep the hope alive, quantum leaps happen ! For example, great advances in other medical fields, like gene therapy or stem cells or depression treatment or auto-immune diseases, can lead to something useful for POIS.
Thanks, Quantum and Pentra!
I've traveled down two POIS roads: (1) "gloom-and-doom-never-a-cure" and (2) get-INVOLVED-forum-activism (a mission!) with a healthy dose of o p t i m i s m
•The latter (2) helps my POIS...today
•The former (1) does nothing for me, or worse, spirals me ever downward
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you're right. i apologize if i sounded rude and not nice, i have nothing but the up-most respect for what you guys have been doing. it's just i'm very frustrated that the odds of a cure are slim to none given there's no incentive in a cure. so this has made me very war-weary. i was just venting on you guys at the expense of my own anger over all of us living with this condition.
•Thanks for your answer, Pentra !
•I wish you to find at least some way to relief your symptoms, and increase your quality of life. Any level of relief is a step in the right direction !
Ditto on •both•, Pentra! :) :)
demo
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FYI,
(Bold highlighting mine)
Best to all! :)
demo
Re: NORD Issues Statement as Senate Postpones Vote on Cures Legislation
Washington, D.C., July 14, 2016 – The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), as the Senate announced it would not vote on its Cures legislation, also known as the Senate Innovations for Healthier Americans Initiative, until September at the very earliest.
“On behalf of the 1 in 10 Americans with rare diseases, most of whom are still waiting for a treatment or cure, we are disappointed that Senate Cures was not able to pass at this point. We will keep pushing for this legislation through the summer recess and into September to ensure the voices of patients and families are heard.
Many people with rare diseases are in a race against time. There are 7,000 rare diseases and 95 percent of these have no treatment. This public health issue encompasses cancer—approximately half of people with cancer are battling a rare cancer—and neurological, metabolic, digestive, blood and other disorders that are present across the medical spectrum.
This vital package includes billions of dollars
to spur medical innovation that would help the rare
disease community [which certainly includes POIS ! - mod edit] , including new funding for critical research at the National Institutes of Health (NIH) and to accelerate drug approval at the Food & Drug Administration (FDA), and other provisions such as the OPEN ACT and Vice President Biden’s Cancer Moonshot, with the potential to stop rare diseases from altering and ending the lives of too many Americans far too soon. Most pressing is the reauthorization of the Rare Pediatric Disease Priority Review Voucher program currently set to expire at the end of September.”
Peter L. Saltonstall
President and CEO
National Organization for Rare Disorders (NORD)
Did a friend forward you this email? Sign up to get rare disease policy updates in your inbox!
NORD
55 Kenosia Ave
Danbury, CT 06810
Sent by
orphan@rarediseases.org
Don't be shy.
Send an email, it's safe...
...and it's monitored by someone(s) @
NORD! (I just checked :) )
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(http://i858.photobucket.com/albums/ab143/demografx/E2FC75E8-EDD8-47ED-B72E-38330B401D72.jpg)
Here's a happy, in-the-know POISer reading the final published Dr. Komisaruk study report on POIS -- published in the Journal of the American Medical Association! (2017)
;D
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Wishful (but positive) thinking, demo!
;D
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Hi Demo, thanks for the good news.
Do you mean the study will be published in 2017? I just checked the current issue of the journal and didn't find anything POIS related.
Update: Oh, sorry I didn't understand you at first. It's great you always keep us hopeful.
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I need to be more careful joking!
;D ;D ;D
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zeynali, thanks for the kind compliment :)
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(http://i858.photobucket.com/albums/ab143/demografx/035B63B5-4CB8-438A-9179-A5727ACD5E96.jpg)
http://rarediseases.org/summit-overview/
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On Aug 29, 2016, at 7:10 AM, Jacqueline Kraska <jkraska@rarediseases.org> wrote:
Hi Demo,
[The Final POIS Study Public Report #4 -- officially due on September the] 18th is right around the corner so I'll be following up with the PI [Dr Komisaruk] this week to ensure he has the relevant paperwork etc., to submit it, and once passed to MAC for approval get to you ASAP for sharing.
I hope all is well with you.
Kind regards,
Jacqui
NORD
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I think there will be much disappointment for those who had high expectations for this 3rd report, though.
I agree, Quantum.
For reasons we discussed extensively...I'm preparing myself for a less-than-thrilling Rutgers summation (Final PUBLIC Report #4/4).
But my eye is on the big picture (final peer-review & publication of...our FIRST REAL POIS STUDY!) ... Expected release date:
2017!
Sorry.
But that's where we're at, guys. :)
MAC link:
http://rarediseases.org/nord-appoints-genetics-metabolic-specialist-marshall-l-summar-m-d-chairman-board/
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I know that we're all anxious about tVNS and fMRI specifics...Quantum and others here have finally convinced me -- it won't happen till its published in a nice, safe, well-respected milieu.
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On Wed, Sep 14, 2016 at 1:09 PM, demo wrote:
Hi Jacqui,
I assume everything is in motion?
Demo
On Sep 15, 2016, at 7:55 AM, Jacqueline/NORD wrote:
Hi Demo,
I hope you are well. The deadline is the 18th of September so we should receive Monday the latest. If we do not we'll be following up with Dr Komisaruk.
Just to let you know I am actually leaving NORD next Friday is my last day here. My colleague Allison Seebald will be your contact from then onward.
It has been a real pleasure working with you and I wish you the absolute best with everything!
Kind regards,
Jacqui
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If anyone wants to send Jacqui a thank you note for her work, etc., let me know via PM and I'll be happy to get it to her.
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Do we have any updates for the 4th POIS report? :)
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We're waiting for NORD to let us know, Habibou.
I hope it's very soon!
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Habibou, your post just prompted me to write to NORD:
To: Allison/NORD, cc: Jacqui/NORD
On Sep 24, 2016, at 3:31 PM, demo wrote:
Allison, welcome to the POISCenter Research Grant project!
Please let me know if Dr Komisaruk provided you with the required information on Report #4 due on the 18th?
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On Sep 26, 2016, at 9:47 AM, Allison/NORD wrote:
Demo,
Thank you for the warm welcome! I am very happy to be supporting rare disease research through NORD's grants program!
Regarding your inquiry, Dr. Komisaruk has requested an extension for Report #4. Like reports, extensions are reviewed by NORD's Medical Advisory Committee. Once MAC has reviewed this request, I will let you know if the timeline for this project has been adjusted.
Best,
Allison
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Just to let you all know, that we, your admins/mods, are all at work on the next step with NORD.
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Just to let you all know, that we, your admins/mods, are all at work on the next step with NORD.
THANK YOU Demo! I know and and many others are very curious.
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Just to let you all know, that we, your admins/mods, are all at work on the next step with NORD.
THANK YOU Demo! I know and and many others are very curious.
Yes, Hoping, many of us are curious and, sad to report, frustrated. We're taking stronger communicative measures now.
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Just to let you all know, that we, your admins/mods, are all at work on the next step with NORD.
THANK YOU Demo! I know and and many others are very curious.
Yes, Hoping, many of us are curious.
We're taking stronger communicative measures now.
demo
Your Quack-In-Chief ;D
(see my new profile pic -- above)
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On Oct 16, 2016, at 7:39 PM, Allison/NORD wrote to me:
Thank you for your message. I am attending NORD's Rare Diseases and Orphan Products Breakthrough Summit in Washington, DC - I hope to see you there! With so many great sessions and speakers, I will be too engaged to respond to emails until I return on October 20.
[emphasis mine - demo]
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(http://i858.photobucket.com/albums/ab143/demografx/BE91D6E2-054B-428B-A13C-2CDAA9510BB3.png)
All of us @ admins/mods have a strong, watchful eye on our Rutgers project. We're now hoping for positive progress reporting soon.
(http://i858.photobucket.com/albums/ab143/demografx/29D0F943-11C1-48F5-809A-1ACDF76931BA.gif)
You're in good hands!
Best,
demo
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I emailed the above 2 posts to NORD & Dr Komisaruk.
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Just to let everyone know...I'm searching my inbox as often as u can imagine :)
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(http://i858.photobucket.com/albums/ab143/demografx/BE91D6E2-054B-428B-A13C-2CDAA9510BB3.png)
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Just to let everyone know...I'm searching my inbox as often as u can imagine :)
Hey demo. No word yet I presume?
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Just to let everyone know...I'm searching my inbox as often as u can imagine :)
Hey demo. No word yet I presume?
Yes, Hoping, they're thanking us for our patience. My feeling is we'll have a breakthrough soon, our communications with both NORD and Dr K are still active, as recently as this week. But little is mentioned specifically about the study. I have the highest confidence that things will be materializing soon.
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This type of research is always under scrutiny to prevent ANY adverse effects on patients. Even when animals are used there are strict guidelines which prevent cruelty. Our program is not a simple one and unfortunately it has been monitored heavily to prevent ANY possibility of induced suffering. As you all know all of us suffer when we have an orgasm.
This has caused the program to be very slow. But we have been assured that the program is in progress.
Your faithful founders,
demografx & Daveman
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This type of research is always under scrutiny to prevent ANY adverse effects on patients. Evan when animals are used there are strict guidelines which prevent cruelty. Our program is not a simple one and unfortunately it has been monitored heavily to prevent ANY possibility of induced suffering. As you all know all of us suffer when we have an orgasm.
This has caused the program to be very slow. But we have been assured that the program is in progress.
Your faithful founders,
demografx & Daveman
Yes, absolutely, it is akin to inducing a asthma crisis in patients in order to study asthma crisis and their relief... that leads to ethical problems for sure.....
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...it is akin to inducing a asthma crisis in patients in order to study asthma crisis and their relief... that leads to ethical problems for sure.....
Quantum, excellent analogy! :)
(http://i858.photobucket.com/albums/ab143/demografx/12C2A528-E082-4137-892F-22648EF30668.jpg)
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This type of research is always under scrutiny to prevent ANY adverse effects on patients. Evan when animals are used there are strict guidelines which prevent cruelty. Our program is not a simple one and unfortunately it has been monitored heavily to prevent ANY possibility of induced suffering. As you all know all of us suffer when we have an orgasm.
This has caused the program to be very slow. But we have been assured that the program is in progress.
Your faithful founders,
demografx & Daveman
Yes, absolutely, it is akin to inducing a asthma crisis in patients in order to study asthma crisis and their relief... that leads to ethical problems for sure.....
Kidding aside, thank you Quantum, COLM (Colm_2), Daveman, Stef, and many other forum members -- for bringing POIS out of the Dark Ages (just ask b_jim, Defsync, John21, CP2) and into...The Future!
demo
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Im really nervous about it all.
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(http://i858.photobucket.com/albums/ab143/demografx/0AB1DFA4-9DD0-49D6-8488-928461A3EAAD.jpg)
Joking. But I do understand your frustration, MirkoThiel0!
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(http://i858.photobucket.com/albums/ab143/demografx/1A2EC6CA-5692-4610-BFA3-1B4DCDD24EC1.jpeg)
https://rarediseases.org/nord-ready-address-new-challenges-based-election-results/
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And to conclude any skeletal remains on a more positive/upbeat note:
(http://i858.photobucket.com/albums/ab143/demografx/84BCEE17-4098-40BB-ACFC-F56636DCD65A.gif)
POISCenter's very own Break Dancing Skeleton!
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That dance move
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Nice skeleton!
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(http://i858.photobucket.com/albums/ab143/demografx/6C9175EE-6936-4426-97B1-9414017CD225.png)
https://rarediseases.org/senate-passes-landmark-21st-century-cures-act/#utm_source=PolicyAlert_21stCC_Dec7&utm_medium=email
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(http://i858.photobucket.com/albums/ab143/demografx/6C9175EE-6936-4426-97B1-9414017CD225.png)
https://rarediseases.org/senate-passes-landmark-21st-century-cures-act/#utm_source=PolicyAlert_21stCC_Dec7&utm_medium=email
Trump will probably scrap that ;-(
Let's hope not!
:)
Demo
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In spite of the delays, I think we have already benefited enormously since the beginning of our involvement with Stef, NORD, and Rutgers.
The fact that the world-renowned orgasm scientist Dr. Barry R. Komisaruk (selected competitively by NORD) studied POIS in and of itself is a POIS breakthrough!
The exciting possibility of tVNS working for POIS is already a dramatic benefit from Dr Komisaruk's thinking in depth about POIS in order to win the NORD grant, along with The Rutgers fMRI Orgasm Lab, distinguished Rutgers faculty and the Rutgers U. Medical team.
Having put 2 & 2 together -- from his extensive knowledge of orgasm-as-science, Dr K et al gave us the benefit of looking at the vagus nerve as a possibly high likelihood of being a major POIS culprit.
We have already begun very serious investigation and some of us might meanwhile explore -- SAFELY -- some of the implications of Dr Komisaruk's POIS theory.
Such as COLM aka COLM_2, has done in a recent thread, very interesting! :
http://poiscenter.com/forums/index.php?topic=2387.msg20106#msg20106 plus a thread with Quantum & me discussing devices sold at retail checkout.
Be careful, everyone!
(No matter what you try)
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I note NORD does not yet list POIS in their rare diseases database :/
https://rarediseases.org/?s=P&post_type=rare-diseases
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I note NORD does not yet list POIS in their rare diseases database :/
https://rarediseases.org/?s=P&post_type=rare-diseases
You are right, Dirkstar, and that is a bit disappointing. But NORD have changed their rules concerning the listings, and they have very strict requirements for what they call a "report" for their Rare Diseases Database. I have read their 14 pages writing requirement guide, and I estimate it take could take up to about 40 hours of dedicated work to come up with a report that will be accepted ( my feeling is a fairly acceptable report made from 10 to 20 hours of work will be met by some demands for modifications and improvement by their reviewers).
We have to choose our battles, because this forum do not have much resources in terms of available hours of work, so we have to focus on what's the best things to do.
For me personally, I think that keeping this forum alive and focusing on a better understanding of the cause of POIS and how to relief POIS, and also keep it friendly and well-running, is important, and that is where I put my spare time for now. I have also talked about my project for a poiscenter wikipedia page, and I think this would bring more awareness than a listing on NORD site, because wikipedia is much more visited ( but this is a very long term project). There are communications to do with NORD about the research, and Demo si working a lot on this, as well as his usual lively presence on the forum. Everyone in the moderator team is doing all they can to help the POIS cause.
If a group of members is willing to work on this report as a project, than may become possible to write this report. Anyone interested to do so can manifest himself and for the help of ther members. But typically, POIS sufferers do not have that much spare time to put on projects needing cognitive and other personal resources - we have to keep our life going, either on the personal and on the professional side. We usually have to work hard in order to compensate for the chunks of time we lose to POIS, so before launching a project like this, we have to be sure that it will pay off in the long run.
For now, I do not feel this report is a top priority, considering the time it would need, and the expected results.
What do you think?
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In spite of the delays, I think we have already benefited enormously since the beginning of our involvement with Stef, NORD, and Rutgers.
The fact that the world-renowned orgasm scientist Dr. Barry R. Komisaruk (selected competitively by NORD) studied POIS in and of itself is a POIS breakthrough!
The exciting possibility of tVNS working for POIS is already a dramatic benefit from Dr Komisaruk's thinking in depth about POIS in order to win the NORD grant, along with The Rutgers fMRI Orgasm Lab, distinguished Rutgers faculty and the Rutgers U. Medical team.
Having put 2 & 2 together -- from his extensive knowledge of orgasm-as-science, Dr K et al gave us the benefit of looking at the vagus nerve as a possibly high likelihood of being a major POIS culprit.
We have already begun very serious investigation and some of us might meanwhile explore -- SAFELY -- some of the implications of Dr Komisaruk's POIS theory.
Such as COLM aka COLM_2, has done in a recent thread, very interesting! :
http://poiscenter.com/forums/index.php?topic=2387.msg20106#msg20106 plus a thread with Quantum & me discussing devices sold at retail checkout.
Be careful, everyone!
(No matter what you try)
Well said!
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Thank you, Hoping, best wishes for the holidays!
Demo
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On Dec 28, 2016, at 5:48 PM, Barry Komisaruk wrote:
Dear Demo,
Thank you! I wish you and yours a joyful, and especially healthy, new year.
Sincerely,
Barry
Barry R. Komisaruk, Ph.D.
Distinguished Professor of Psychology
Bd of Governors Dist Service Professor
Adjunct Professor of Radiology
Rutgers University – Newark
From: "demografx"
Date: Wednesday, December 28, 2016 at 6:13 PM
To: Dr Komisaruk
Subject: Best wishes from POIS
Demo
(http://i858.photobucket.com/albums/ab143/demografx/0CF76FCA-499C-43E9-A48F-CD01C4863CC6.gif)
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That's nice we have some news from Ph Komisaruk at least :)
Do we have some more updates regarding the release date of the study, 4th report and final report?
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Thanks, Habibou!
We don't have specifics yet. We do know that the study is still in process and will let all of you know specifics as soon as we know them.
Best wishes, and thank you for being such a great forum supporter!
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Hi Demo,
It would be good if we could updates at regular intervals. Just a small update once a month would be appreciated.
Thanks - FB
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Hi FB,
Demo has not been well this week but is recovering now. So don't be surprise if there is no fast reply for now, which is not usual with Demo - his dedication to this forum is incredible !
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Thank you, Quantum!
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Hi Demo,
It would be good if we could updates at regular intervals. Just a small update once a month would be appreciated.
Thanks - FB
Thank you, FB!
I sent your post to NORD and just now received this reply:
"Demo,
Thank you for sending this feedback from the forum. I will share this request with the NORD team so that we can discuss how best to move forward.
I hope that you are feeling better after your surgery! [I just recently had a serious fainting spell, scared the ---- out of my wife, rushed to the ER, then they implanted a pacemaker. I am LUCKY!!! -- demo]
Best,
Allison"
[NORD]
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Wow Demo. That is a lot of excitement. Glad u are back, but please take care.
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Wow Demo. That is a lot of excitement. Glad u are back, but please take care.
Thank you, Mr Raba! :)
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Hi Demo,
It would be good if we could updates at regular intervals. Just a small update once a month would be appreciated.
Thanks - FB
Thank you, FB!
I sent your post to NORD and just now received this reply:
"Demo,
Thank you for sending this feedback from the forum. I will share this request with the NORD team so that we can discuss how best to move forward.
I hope that you are feeling better after your surgery! [I just recently had a serious fainting spell, scared the ---- out of my wife, rushed to the ER, then they implanted a pacemaker. I am LUCKY!!! -- demo]
Best,
Allison"
[NORD]
Woah, that's really scary. Hope you recover soon! Please take rest and don't bother logging into the forum for a few days till you are better.
Just out of curiosity, do you know if the TRT had any role in this?
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Thanks, joelawerence! As far as I know TRT wasn't in the picture, but who knows? Since my open heart surgery in 2009 (5-way bypass), my GP has
not been thrilled with my TRT regimen. Thanks for bringing that up!
And please don't worry (but thank you) about my logging in here, it's therapeutic :)
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Hello All...
I just wonder if anybody have a new about the final report which as I know was supose to be ready 6 month ago...??
For me its quite surprising that we dont have any news...we paid for that study and the minimum is to give us some update considering they are late.
For me either, they had intersting result and need more time to work on it(but in that we be informed of further investigation, need dor guinea pig, more funds, ets) or they just dont care about it and dont take the time to write down the 5 pages final report.
Both case, its not really serious
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(http://i858.photobucket.com/albums/ab143/demografx/C5BDCC78-5F6E-43D8-A7D4-9B8259B8B1FE.png)
https://www.scientificamerican.com/article/the-neuroscience-of-heart/
In Stef's post -- http://poiscenter.com/forums/index.php?topic=2086.45
-- which summarizes an early interim report, Dr Komisaruk discusses HRV (heart rate variability) and how it might relate to POIS.
This article seems to explain HRV in clear language.
Another thread about HRV from here, started by b_jim, and where Quantum also gave detailed information about HRV and its measurement as well:
http://poiscenter.com/forums/index.php?topic=2179.msg17607#msg17607 .
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Hello All...
I just wonder if anybody have a new about the final report which as I know was supose to be ready 6 month ago...??
For me its quite surprising that we dont have any news...we paid for that study and the minimum is to give us some update considering they are late.
For me either, they had intersting result and need more time to work on it(but in that we be informed of further investigation, need dor guinea pig, more funds, ets) or they just dont care about it and dont take the time to write down the 5 pages final report.
Both case, its not really serious
Hi, LAPOISSE,
Thank you! I sent your very well-considered concerns over to NORD, and I just now received an immediate reply:
March 9, 2017:
"Demo,
The delay with this project is not due to apathy, but rather the great care being taken to ensure that the research is conducted according to the highest scientific and ethical standards. I hope that that will be evident in the future progress reports, but I recognize that this does not necessarily make the wait any easier. Please know that, according to NORD's grant policy, final payment is not made to a researcher until the final reports have been received by NORD and approved by NORD's Medical Advisory Committee.
Best,
Allison,
NORD"
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Ok...can we have a date ? Would be also interesting to know roughly why Rutgers need that extra time. Ensure the study is conducted properly doesnt requiere time for me.
Thanks
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And we still play the waiting game ¯\_(?)_/¯
¯\_(°.°)_/¯