I am very grateful to everyone who contributed to this milestone. Very, very grateful. In did not have a chance to contribute, as I only discovered my POIS last October. Am I the first to ask the following question?
WHAT'S NEXT?!
How can we get more studies and more funding moving?
"But, don't you think we should wait for the results of this study?"
No, I do not. Neither am I looking past the Rutgers study in any sort of dismissive way. In fact, I plan to participate in Dr. Komisaruk's study.
Let's do the next big thing! Now!
Thanks again to the founders and participants in this site. Your work gives me (and many men) strength and hope.
Am one of those interested in provoking a conversation here, on the back of what Rooster speaks of above and his "What's Next" comments. This is in the light of how long it appears to take in the world of validated research studies and set up phase for the current Rutgers one.
I admit my bias (on age grounds), and finding it hard not to lose hope about a cure for POIS.
Is there for instance, visibility (Stef/Daveman/DEMO) on who else was in the mix for the original NORD research grant awarded last December? Perhaps the number 2 proposer had an equally valid study, which if we knew what it was, we could discuss if there is any merit in assessing the appetite for another (valid study) round of funding.
To run this idea forward, let's say that NORD could advise us who and what number 2 / 3 thesis was, for a potential study. If it seemed equally credible to the Vagus Nerve idea, we could seek assistance then, in analysing if a parallel complementary study would also help in bringing us forward to more hope and closure to this. With the existing NORD credibility, and Dr. K's interest in studying this with us, would this NOT also open the door potentially, to some private funds, in addition to what else we could raise between the forum folks.
I would suggest of course (in this situation were it to move forward), that those who already contributed significant $'s, should not be tapped for further funding in a new round, unless they felt motivated to also do so.
I may be alone in this thinking, or Rooster or other experienced forum members might think this worth discussing.
I would be very interested if Daveman & Demo could express their immediate thoughts further here on the forum, being the two leaders. You both may be able to give clarity and categorically say this would be wise/unwise at this time, before Rutger's study completes. However, seems like this could be up to a year, at the current speed (no criticism intended-just the wheels of research studies move slowly) and this is an unusual one of course.
It feels to me anyway, pretty frustrating to think that we are moving close to unraveling the truth of POIS, and yet, seem so far way. Patience is a difficult virtue for a POISER !
Hi Colm,
Sorry, I have become incredibly busy in my "private life". I don't get the opportunity to interact as much as I would like. Just maintenance alone on the site takes a good bit into any spare time that I might have available.
And, it does not reflect a disinterest in the goings on in the forum either....
I hear your point loud and clear. I too am often tempted to venture into other branches of investigation, but one thing always (for the time being) comes to the surface every time I may have a doubt o feel a need to move any investigation onto a different path.
That thing that comes to the surface is a question: "WTF do I know?"
I may feel that one way or another is better. And we all feel that their one certain pet theory, is really the right one. But we chose this path with NORD to get started, precisely because it was obvious that we didn't have a clue. Five+ yrs. saying: "what about this, or what about that?". In those years, some things looked like they had promise, but turned out to be flops, or some things worked for some and not for others. SOme theories were actually dangerous.
The idea to fly with perhaps a runner up may be a good one, but it's quite a different thing to work with someone who has decades of research program administration, than it is to run and take charge of a program by yourself.
So the general idea is, "let's get the ball rolling" get off to a start, see how a program is administered, and then see if there isn't a way to complement the results or follow up with a second parallel program, depending on how the first one goes.
There will have to be a benefit to this first program, one way or another, even if that be just that POIS can be defined is real.
We could get anything from:
"Yes, POIS is as a result of excessive or adverse stimulation of the vagus nerve, and that happens because of "such and such" mechanism", through
"It's not caused ny the vagus nerve, but it is eveident that the vagus nerve is affected, and this causes "such and such" of the symptoms of POIS" to
" The vagus nerve isn't involved at all, but fMRIs of patients and nonpatients demonstrate that POIS produces influences in patients that nonpatients don't experience.
Hypothetical... but the principal aim of the NORD investigation is to establish a credibility, if nothing else, in the fact that POIS is real.
My feel is perhaps closer to the second case, where they may find that the vagus nerve is not the root cause, but is affeceted by POIS. I am certain of this.
I recently had a vagus incident. There was a stomach virus in my area recently, and I don't remember the exact name of "what happened" to me, but it was clasified as a vagus reaction to excessive stimulation caused by the virus. It helped me realize how involved the vagus nerve IS in our system. This same reaction has happened to me once or twice a year (in the past two years).
It usually leaves me unconscious with very low blood pressure. Not a typical POIS symptom, but since my POIS has been with me longer now, I see that I am more sensitive to things that can upset the vagus balance.
Anyways. I feel that from here we have somewhere to go. We should certainly undertake more fundraising, and perhaps consider taking on research where we have a little more control. But I would really like to feel that we can effectively use that control... as lay-people, it is really complicated to try and take on that responsibility.
BTW, NORD cannot release nor confirm who the 2nd and 3rd runners up were. There may be a point at which such information could be available less directly once, the process has moved forward, I don't know.
Don't know if any of this helps. We just have to trust the system for now.
