And POIS is not due to a gene mutation.
We don't even know what POIS is that's the whole point of research LOL! Without doing any research they already seem to know that POIS is not due to a gene mutation 
You are right Moun, we still don't know if it is due to a gene mutation. A research should be done first. But they said no. Seems It is only a pretext. This leads me to think if there is another reason behind, for example, It's not politically correct
to say the real thing. I don't know...
Hi fernab, and everyone,
About those reasons that may not be politically correct, here is my understanding of how medical research works.
I think there are 2 main motivations behind the choice of what a medical research team choose to work on:
1- Money (attracting money from investors, with good perspective on the return on investment), because you need a lot of funding to support research.
2- Scientific recognition through the publication of a breakthrough article
POIS has obviously no chance for the first ( big money), we are too few for being a "good investment", and even if a drug or treatment was found, no chance for it to become a blockbuster and bring billions of dollars in sales per year, like it does if you find a new treatment for diabetes, asthma, hypercholesterolemia, cardio-vascular diseases, or the like. If you had 500 millions to invest in medical research, hoping to get profits in return, would you invest in diabetes research or in POIS research? hehehe......
The chances for the second ( scientific recognition following a breakthrough), considering that not much is known yet about POIS, are moderate to low. The researchers have no idea what to do or try first, and the risk of losing time and not making any advance or breakthrough, even on the understanding of POIS, are high. So, they may prefer a safer bet to invest their time in. However, what is very good for us is that other sexual health problems have been so much researched that any breakthrough is hard to achieve in those topics, so, some teams that allows a small percentage of their time to some risky research topics will one day or another accept the POIS challenge. A team will hardly come up with a breakthrough about premature ejaculation, since thousands and thousands of books and articles have been published on it. You may then look for uncharted territories....et voilà , why not POIS !
So, from my point of view, our better chances come from:
1- A specialized team in men sexual health that has some place in its busy schedule for a more risky venture....maybe by an undergraduate or graduate student looking for an interesting topic that could bring some attention to his work and help launch his career, mentored by researcher that already knows about POIS ( or something along these lines).
2- We can also hope that Dr Waldinger or another researcher that have already published on POIS will come up with a breakthrough article.
3- Another great opportunity would be a clinical researcher who have POIS himself, or have a close relative who is a POIS sufferer, and invest a lot of time in research for this rare syndrome. What comes to my mind is the example of Dr Jacob O Levitt, who has hypokalemic periodic paralysis, and who made great contributions to the advancement of the treatment of this rare disorder ( see
https://translational-medicine.biomedcentral.com/articles/10.1186/1479-5876-6-18, and the website of the foundation he has created at
https://www.periodicparalysis.org/site/ )
So, we have our chances. the important thing is not to be too naive, and think that the medical community will rush to help us. We already know and feel it is not the case... Having realistic expectations is advisable, as it protect us from becoming too frustrated about how slow the POIS research is going.
Till a major POIS study will be published, we will see POIS reviews articles ( not so risky, just a summary of what have been done so far), and case reports, which are not a breakthrough, and are not so demanding in term of time, and usually present only one case, or a few, and state what have been observed, what have been tried, and the results obtained. That's positive, but not enough.
I do hope our grant offer will motivate some researcher to invest some time in clarifying what POIS is about. Once a path finding research is done on POIS, then other teams will be more likely to invest time in POIS, based on what have been found in that previous study.
What I understand from the answer of the team you have contacted, stating that POIS is not caused by a single genetic mutation, is : " it is much safer for us to work on a disease that has already been proven to be linked to a single genetic mutation, so that we will not lose our (precious) time trying to figure out what causes you rare disorder". Just my opinion, here, but I do believe it is approximately what happened. In my contacts with many research teams, I had once an "accidental" proof that medical research teams, at least the big ones in universities, have a legal/financial team analyzing each project request, and giving advice to the research team about whether or not they should go on with a particular research project. No doubt, medical research is a very well organized business.
