Hello All,
I've been in touch with demografx and Daveman about the need for solid, objective research on POIS. They both felt it was appropriate for me to provide some input about this to the group.
POIS is one of those rare disorders that is really
ripe for research. Because of the very brave efforts of you men (I mean this sincerely) to post data, describe symptoms graphically, report on possible antidotes, etc, and Animus' taking the lead on starting to raise public awareness through the TLC program, I think the next logical step is starting a true research grant fund.
POIS, which I had never heard of before demografx wrote to NORD about it, is an awful, dramatically life-altering disorder. From what I've read on both forums, POIS can be seriously disabling for anyone suffering from it, making it very difficult to earn a living, engage fully in activities of every-day life, and can cause countless sick days. The depression and other psychiatric symptoms that occur seem almost normal, given the situation, but they may even be part of the effects of the disorder, itself.
But I am willing to bet that the solution(s), pharmaceutical or otherwise, will be found sooner rather than later, once more solid research is undertaken.
As you all know, there is a pitifully small amount of published research on this disorder.
You men are going to have to change that! The cold, hard truth is that
most research for rare disorders needs to start as a "grassroots effort." Groups (or--individuals) need to raise the initial funds -- government and/or private industry are not yet interested, as there is practically nothing published to capture their interest. They don't know you yet or what you are going through.
The big money for funding of research on rare disorders comes after some solid, basic research is undertaken in the form of small (
relatively small) grants awarded to honest, highly-respected, impeccable researchers. That's the truth, plain and simple.
NORD has a 100% above-board honest, objective, very formalized research grant program. It's a "seed grant" program, meaning that these grants are for the initial basic research that will "plant the seed" for major future funding from government or private industry. However, there is always a chance that a seed grant, itself, will give rise to a treatment -- it has already happened within NORD's grant program.
As I've told demografx and Daveman, I don't care (meant in the most respectful terms) where you fund your research. But I do really care that you begin the process of collecting funds, and giving them to a reputable place. A a RN working for a great organization that respects the individual -- and that knows about the isolation and misery that rare disorders cause -- I think you would do well to consider raising funds for a POIS research grant through NORD.
The basics are as follows:
Minimum cost to offer a research grant -- $33,500 US. ($30,000 goes to the researcher, and $3,500 goes to NORD's administrative fees.)
NORD is a not-for-profit organization (a 501(c)(3) -- all donations are tax-deductible for the donor.
NORD does not profit from the grant program. In fact, we barely break even on the expenses of administering a grant.
NORD does all the work in finding potential researchers of impeccable quality, and then monitoring the progress and making the payments. The money is held until on-going requirements are met by the researcher. Our Medical Advisory Committee (MAC), each a researcher in his/her own right, choose the award recipient. The donors don't have a say in who gets the award, but they do have input on how to phrase the goals of the research.
Here is a link to NORD's research grant policy from our website --
http://www.rarediseases.org/medical-professionals/research-grants. I encourage you each to go to the link and read about our program. And I will be happy to answer individual questions from anyone. You can reach me directly at rn@rarediseases.org or research@rarediseases.org.
This is something that needs discussion amongst yourselves, as a group.
I believe that POIS is a medical condition that would be of great interest to researchers, especially those who specialize in the area of immunology and autoimmunity. In addition--and I know this might be a bit controversial but am just throwing it out there -- it's unclear whether "post-orgasmic illness syndrome" is the best name for this syndrome, since apparently an ejaculation is not always necessary to go under the spell of POIS. "autologous semen illness," or "autoimmune seminal fluid syndrome," may be a more succint term. Just a thought that I wanted to share.
Please discuss this amongst yourselves. Use PMs, or--discuss it openly. I think that POIS time has come--you men deserve the respect of dedicated, highly-regarded researchers who also have that magic ingredient -- compassion.
Best to everyone,
Stefanie Putkowski, RN
NORD