With all of these studies, and so many researchers on topics seemingly connected to our condition, I’ve been tempted to reach out to so many of them, but would be out of my realm, and worry about poisoning the well for the rest of us, and not be taken seriously.
Having said that, I’m wondering if the moderators or the Foundation consider (or have considered) actively reaching out to researchers who may have value to our cause. There seem to be so many of them, and even a form letter, with some modifications, can go out to them. We have hundreds of studies, each often with several researchers, and we shouldn’t only theorize what their studies may mean compared to our condition.
It would cost us only some time to email these researchers, and share with them the good work the foundation has done, in hopes they can contribute to it. Even if it accomplishes nothing, at least we would have gotten the word out about PFS, and maybe, sometime in the future (and hopefully when I’m still alive) the condition will be taken seriously and a “cure” will be found.