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.
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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.
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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.
