Originally Posted by Conductor71

Welcome! I have all but stopped posting on other forums because I feel like scare newly diagnosed people and/or annoy everyone else, so I am glad that I am still reaching a few. I think it is only natural to be concerned with causatives. Like Soccertese, I want to see disease altering discoveries for the most part too, but have a hard time with it because there always seems to be so many promising treatments on the horizon that go absolutely nowhere. The snail's pace is a hope killer.


Eventually, you realize that to even have really eradicate this, we need to be driving some portion of the research. In our situation, a cure means reversing our damage and preventing in others with vaccines. If they cannot glom onto at least one thing we all share in common no matter how we arrived here; genetic or idiopathic, then I don't foresee that happening. Since no one seems too keen on the reliability of us to provide reliable data on our own life and medical histories sharing our info here is the next best bet. It is a sad state. When is the last time we have seen a recent publication on why so many of us are Vitamin D deficient, or how many of us share a common blood type…

It truly baffles me as to why we still have no patent registry. Our good political reps have been dithering on that for over 4 years now. Exchanging info online is the only way this seems to be happening. Patients Like Me have profit motives, many of our foundations have no motives; even 23andMe seems to be resting on their laurels. We are the only ones with earns and urgent intention, and we are the ones who have little to no clout. The more anecdotal info we share openly online the better. Some day it will be data mined and useful.