The last Study was Rutgers. What good is publicity? We need answers and sound study proposals not just publicity.
Dr. Hellstrom has a solid medical education so I like that but Tulane is not a ranked medical institution, not their college in either research or primary care by us news and world report or their associated hospital. It in no was will help put POIS on the map compared to a top hosptial or Medical School.
Is there only this one proposal so far? This is what I was afraid of. We get one or two proposal to desperately we just choose. We need to contact 20 or so top Sexual medicine doctors and try to convince them to make a proposal.
I would like to state that this opinion is not the position of poiscenter,com about Tulane. Poiscenter.com is looking forward to cooperate with Dr Hellstrom, Mr Nyugen, and all of Tulane team, as we do hope that they will go ahead and make a Request for Proposal to NORD for our grant.
The ranking of universities does not matter to us, but rather, we look for a genuine intention from competent researchers of helping POIS sufferers, and that is what we see expressed in the recent POIS review article from Tulane ( see at
http://www.smr.jsexmed.org/article/S2050-0521(17)30116-6/abstract )
I totally agree with you, Disaster, we need formal scientific research on POIS. But research in one thing, and making POIS known in the media is another thing, but they are often related, one coming from the other. For anyone following the activity of this forum, we have reported many briefs articles that have surfaced following Tulane's article on POIS, and in some highly visible sites, such as forbes.com, and in some of the largest health sites on the web, even leading to an interview by one member, dean93, with one of the big men health's site on the web ( see at
http://poiscenter.com/forums/index.php?topic=2582.msg22418#msg22418 ). Granted, much journalists, in those short articles, have spread some myths and false information about POIS, by lack of a clear understanding of POIS and misunderstanding of Tulane's scientific article itself, and comments from readers on those web publications are not always graceful and intelligent, but this is what we have to go through, first, because POIS is so unknown, and we know so little about its real causes, that such lack of clarity is not possible to avoid for now. We have to hang on and brace ourselves. When new, serious studies will be published, a better understanding of POIS will be achieve, and this will reflect in the "after-wave" of web short articles. ( In the case of Rutgers, there have been no publication at all and never will, just an aborted study, leading to nothing, so I wonder why you would be surprised that no publicity came out from there).
About the choice of the team, it is NORD that will alow, or not, the grant, and they have a board of professional to evaluate each proposal, following the many guideline of today's research protocols, and they are much more suited to that evaluation than any forum members. So, any accepted proposal will not be a "desperate choice", but an educated one.
In the process of Request for Proposal, NORD have already been sending the information to as many research team as possible, so any research team that work on sexual problems already received an invitation to submit a project to NORD. In addition to that, the moderators team of poiscenter.com already have individually contacted all those researchers who have published on POIS, to add to the chance of getting as much proposals as possible ( this is how we have contributed to Tulane's interest for making a proposal to NORD for our grant
) .
Disaster, I have already written on the forum about the different aspects to consider when evaluating the future of POIS research, and I will repeat some of this here for you. First, POIS is a very rare syndrome with poor financial potential. If you know how research really works, if there is no large amount of money to get from a specific research, and no substantial funding, it is hard to attract any team, or any company funding. I am aware that 31 000$ is a huge amount of money for a small community like poiscenter, but in the world of scientific research, it is a very small amount, and many teams will just not be interested. On the opposite, you will find tons of funding opportunities, in millions of dollars, for "blockbuster" illnesses like diabetes or asthma, and the rate at which new drugs and new treatments land on the "health market" for these indications is truly unbelievable, and it won't stop anytime soon, because those blockbuster drugs bring back big money for the investors. You will easily find research teams for a study on diabetes or asthma, and funding will be rather easy to find, if you have some promising molecule to work with, or some interesting new idea of treatment.
For POIS, we have to relate to another main motivation, that is, researchers who want to break new ground, to be pathfinders in a very specific or rare disorder, like ours. So, it is very unlikely to have many proposals for a grant, when related to a rare disease, and NORD told us it is so for many of the rare diseases for which they have RFP for, so POIS is no different. I think you should adjust your expectations accordingly, even if it may sound disappointing to you.
So, I am not sure that there are 20 top sexual research teams that could be contacted and be interested in POIS, since we have contacted all those who have shown an interest in POIS and have published on the subject. The POIS community is small, and have scarce resources, and making a good contacts and follow up with a team takes quite some time, and there we have not the time to explain to a research team what POIS is and convince them to develop an interest in it - we have to work with those who already know about POIS and already have an interest in it, like Tulane. My point of view is that it is totally counter-productive to invest weeks of PR with a premature ejaculation expert and try and convince he and his team to do research on POIS, as other sexual problems are completely different from POIS, and as you know, one cannot expect to treat POIS with PE treatments.
Moreover. based on my experience of very polite but mitigate answers from teams that already know about POIS and have published about it, and in some case, total absence of reply, you can understand what kind of answers you can expect from a team that does not know anything about POIS ! What I came to understand is that when they realized they have no clue about how to manage POIS, and tried what was easy to try, then, further than that, you have to be truly, truly motivated as a researchers to go on, because you know you enter an uncharted territory, and your efforts may not pay right away. That's partly why I do not think that POIS, at this point, has the necessary appeal to researchers so that it would justify time and efforts put in contacting those doctors that probably do not even know yet that POIS exists.
We all have a life to live beside POIS. I have a business to run, I have a family and children, friends, and many interests in my life, so I put the time where I think it is useful, and other admins and mods do so to. If you have some specific contact PR you would like us to cooperate on, don't hesitate to PM me. Also, I hope you will change your mind about what has already been done, and that you will see value in the results we got from all the time we have invested for the POIS cause, and, as you may know, on an voluntary, unpaid, basis. Personally, I would prefer to receive some acknowledgement from your part because of our promising contact with Tulane, rather than a "not enough, not interesting" comment, and hope you will turn on the cooperation mode and become more positive in your future posts here.
