NORD Interim Report for POIS Study

[zeynali900]

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.

[demografx]

zeynali900, we will only see the detail when it is in a peer-reviewed medical publication.

[demografx]

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!

[zeynali900]

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.

[demografx]

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.

[demografx]

To all POISers: believe me, I'm as anxious to see this as you are

...and just as frustrated!!

[demografx]

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

===============================



"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."







 

[zeynali900]

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.

[demografx]

I'll submit questions you have here to NORD.

Daveman and I only know what you see above.

[zeynali900]

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.

[Quantum]

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.

[demografx]

I think there will be much disappointment for those who had high expectations for this 3rd report, though.

I agree, Quantum.

[Mr Raba]

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.

 

[demografx]

Thank you for your thoughtful assessment, mrraba!

[zeynali900]

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 ;-)

[demografx]

...how  many members we have here? I guess Demo has the number.

About 600.

[zeynali900]

...how  many members we have here? I guess Demo has the number.

About 600.

Thank you Demo.

Now I think we are very rare.

[demografx]

Now I think we are very rare.

[demografx]

[demografx]

Sorry, zeynali, I'm in a silly mood