This is an important article affecting the entire RRP community, and I encourage you to read it through to the end even though it's long. It addresseses some major changes that include our  RRP Forum, the promulgation of information relating to the use of artemisinin, the FAQ, etc.

(1) Our RRP Forum has, 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 will be left up for now, but no new posts will be allowed. Email functionalioty 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. Postings that I myself have written that are "outdated" are even now in the process of being taken down or edited as needed. In time, much of the Q&A from the Forum will be transferred in a more succinct form to a greatly expanded FAQ.

I see these changes as permanent.

(2) A blog will follow shortly. I see it as not just authored by me, but hopefully by others within the RRP community. Readers, of course, will be able to briefly respond. The blog has been promised for a long time, I know, but it never made a lot of sense to me with a Forum in tow as well. Now it does, and it's a priority.

(3) The artemisinin "guidelines," which were fairly voluminous and evolutionary in nature, have been taken down in their entirety. If any bits or pieces remain on the website, they should be considered incomplete and almost certainly superceded by what has been removed. Because artemisinin is a drug, not a vitamin, it should not be used casually. For that reason, we feel obliged to discourage the use of it outside close medical supervision.

Backstory:

There are overt reasons for these changes, and there is also a back story. You'll need to read through to the end of this post to get both.

While the Forum has indeed "empowered" some patients, it seems to have done the exact opposite with many others. More than a few people using the forum haven't even taken the time to read the FAQ from the main website. Nor have they read from the Forum, wherein their own questions were previously asked and answered, sometimes several times over.

That's the "overt" side of the story.

The back story on this particular change and other pending changes is that some very destructive events have recently occurred within the RRP community. RRP ISA has been doing what it does for well over a decade, and nothing like this had ever occurred before.

Without giving names or going into detail, let's just say that a certain RRP patient who himself required frequent surgeries threatened us with a lawsuit for what he alleged was an unlawful dispensing of "medical advice" relative to artemisinin. There were a lot more threats and some additional saber-waving--all from a single individual who was asked to leave the forum for disruptive behavior on two different occasions.

What needs to be said is that after I called him to ask what he was doing, the patient making the threats very quickly rescinded them and apologized. He wasn't a bad person, and if you asked him now, he would probably say that it's all water under the bridge. He admitted that no medical advice had ever been offered. Quite the contrary, because I kept pointing him back to his physician.

Now, I personally spent over 10 hours with him on the telephone offering support prior to the threats, and another 10+ hours with him afterwards. I think that we both believe that was time well-spent but, as in all things, there is a point of diminishing returns.

Certain very destructive actions were triggered after the first 10 hours that still haven't been fully cleaned-up, even after several requests and yet another open-hearted offer of support on my side; moreover, (2) the effect of the legal threat could be described as chilling.

While we would almost certainly win that point in a court contest, we have no wish to spend the next few years paying out attorney fees defending our position if an allegation such as this should ever again occur in the future.

At the very beginning, I was warned by more than one physician not to publish the artemisinin "guidelines" precisely for this reason.

I published the artemisinin material only after it became clear that the otolaryngological medical community would conduct no artemisinin research of its own. I published it not because I thought it "would" work but because I wanted to see "if" other patients might respond. Many of them did, and I thought that might be enough to get some research started from with 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.

My point is that though I deemed the risks well worth it, RRP ISA still took on an enormous risk in publishing it. It took a risk that it might, in fact, be threatened with a lawsuit.

Not only has virtually no RRP-related in vivo artemisinin research yet been done, but RRP ISA was, in fact, threatened with a lawsuit. That it eventually turned out to be frivolous is indeed a huge blessing, but it also serves as a very serious reminder.

The RRP Task Force isn't about to conduct any research, I  think, and I do not believe there is sufficient reason any longer for exposing RRP ISA to the kind of financial risks that this kind of lawsuit could bring.

Looking Forward:

Unless a physician or a consortium of RRP physicians actually steps forward and offers to take ownership of the artemisinin material in coordination with RRP ISA--we would emphatically NOT entrust the RRP Task Force with it at this juncture--all of RRP ISA's artemisinin material relating to so-called "guidelines" (which have constantly been updated) will become unavailable to RRP patients.

We reserve the right to repost it on our website after a full year passes--assuming the physician/research community fails to pick this up--but patients should not count on it. 

In the interim, the "guidelines" will no longer appear on our website, nor will we give it to doctors or patients even on a special request basis. 

If the RRP patient community wants artemisinin to remain available as a treatment option, it should make that abundantly clear to its RRP physicians. 

Note that from our perspective, doctor(s) using artemisinin would ideally operate within the general context of a formal study.

No one should believe the rumor that there is no funding to implement such a study on RRP and artemisinin. Safety studies reportedly have already been done and RRP ISA has previously offered a huge amount of funding to do a treatment study on humans.

RRP ISA is once again offering this research funding.

At this point, commitments have come in that suggest that we can confidently offer anywhere from six figures of funding and possibly more, based on the kind of proposals that are submitted by physicians/researchers.

RRP ISA does this separately of any other RRP organization, noting that significant differences have arisen in the past in how we operationally define the term "advocacy."

RRP ISA has never been very squeamish about supporting the principle of informed consent or calling things by their rightful names. Based on some history around that issue, our organization will insist on retaining ownership of its advocacy initiatives from this time forward.

We will happily partner with other organations, of course--we are always glad to speak with a unified voice--but we will not agree to dilute our message through that partnership.

Speaking of calling things by their rightful name: 

There are no publicly posted artemisinin "guidelines" for RRP patients to fall back on anymore. If the RRP treatment community walks away from this current research/funding invitation, therefore, it might well be likened to walking away from the broader community of RRP patients.

In my mind, that would not just be tragic but also very shameful.

Requests for "exceptions" have already started to come in. For further clarification of our policy with regards to that, please see Requests for Exceptions as appended to this page.


Some summary reminders:

Please don't forget the reason for these decisions, as stated above. It wasn't because we wanted things to work out this way or because we lacked compassion for RRP patients.

Our best hope is that this current problem might yet be turned into an opportunity.

In closing, please take note too that RRP ISA's staff and board are also human, and most of us are patients. People typically don't respond positively to threats, bullying or verbal abuse.

Lashing out may make people feel good for the moment, but that is one of the reasons why this particular message from RRP ISA was necessitated in the first place.

Somehow, we've got to get beyond that.
 

Warm regards,

Michael Green, Executive Director
International RRP ISA Center
http://rrpwebsite.org