(1) Our RRP Forum had, as you know, been threaded, wherein patients can read posts that are discretely titled and that have been placed in specific categories of interest. The Forum is still online but as of June 2010, it's been closed to new posts. Email functionality through the forum is disabled and log-ins are no longer permitted, since no messaging through the forum exists any longer. People can read existing posts without logging in, of course. These changes are permanent.

(2) The artemisinin "guidelines," which were voluminous and evolutionary in nature, had been taken down for a year, as first stated in June of 2010. It has been restored, with some revisions for clarity. Because artemisinin and artesunate (ART) are drugs, not a vitamin, our emphasis has always been that they should not be used casually. We discourage their use outside close medical supervision. I would also like to have the ability to monitor each patient's progress and to speak with each patient at length (phone, and preferably Skype) if they actually decide to try ART.

Backstory:

While the Forum has indeed "empowered" some patients, it seems to have done the exact opposite with others. More than a few people using the forum hadn't even taken the time to read the FAQ from the main website. Nor had they even read from the Forum, wherein their own questions were previously asked and answered, often several times over. Because each patient needs to know about RRP (education is the key), we continue to think that on balance, this sort of thing is more destructive than not.

We first published the artemisinin material only after it became clear that the otolaryngological medical community would conduct no artemisinin research of its own. We published it not because we thought it would work but because we wanted to see if other patients might respond. Many of them did, and we thought that might be enough to get some research started from within the otolaryngological community. Years after both the RRP ISA and the RRPF urged the RRP Task Force to put artemisinin on the very top of its research agenda, still nothing has been done.

The RRP Task Force isn't about to conduct any research, as it meets only a couple of hours a year year, and we do not believe there is sufficient reason any longer for keeping this information off the main website.