Good thread.
A couple of points.
1) Based on my own knowledge, all of the respected CFS doctors seem to fall into three camps.
Some think it's likely that one or more pathogens (maybe along with genetics) is at the root, and toxins build up in our bodies as a result. Some think that toxicity (as a result of exposures and genetics) is at the root, and pathogens of all sorts colonize opportunistically as a result. And some think that it's "multifactorial," with both certain pathogens AND toxic overload initially being needed in order to start the cycle going downwards.
I personally fall into the third camp, but it doesn't really matter. The point here is that once you get past the first stage, you've got a whole witch's brew going on. And that means that just fixing one element (toxin or pathogen) isn't going to be enough to bring people to anything close to full wellness.
I got remarkably well just by addressing the toxin part. But it wasn't all the way well, and the devil's bargain (living an "extreme mold avoidance" lifestyle) hardly counts as being really well.
Only after I got clear of current exposures did I realize HOW toxic my body is. Unbelievable. Especially since I never realized that toxins were an issue for me at all, until I experimented with Rich van K's protocol in 2007 (after 12+ years of illness).
I was classic enough Canadian Criteria CFS that I strongly believe that if I don't have XMRV, it's not causative. But even assuming that I have XMRV, I don't think it's going to fix the toxicity problem for me.
The only possibility is if it somehow repairs a broken detox mechanism. I've yet to hear a convincing argument that it's going to though. (This would be an excellent topic for discussion: whether it's plausible to think this would happen.)
What does this mean? That those people who think that even the best XMRV treatment is going to magically make them well are in for a disappointment. I've heard of a couple of people get a bit better from antiretrovirals, just as I've heard people get a bit better from other treatments. But if folks want to get to full wellness, they're going to have to get the toxins out somehow.
And believe me, this is hard.
2) The media coverage of CFS being a legitimate illness is a risky marketing strategy.
Short-term, it gives a bit of credibility. But if it turns out that it indeed isn't a key factor, that may turn into a net loss.
The idea that a lot of people who fit into what I'd call "CFS spectrum disorder" (e.g. who have a lot of the biomarkers....low NKC activation, Rnase-L/LMW Rnase-L, low suppressors, PEM, cognitive dysfunction) don't have it even if it is a factor for the most severely affected patients is problematic from a "marketing" standpoint too. Does this mean that they're not "really sick" after all? What diagnosis are we going to give them, if they don't even get the CFS one?
I'm not particularly happy about the fact that people I knew many, many years ago have come to me worried that I might have infected them with a retrovirus (which they think means they're going to automatically get something on the lines of AIDS). As Danny reminds us, there are lots of people with XMRV who don't get sick at all. We don't know how XMRV is transmitted, so there's no particular reason to think that if people do have the virus, they'd have gotten it from me. Even if I have it. Even if it's anything more than opportunistic for anybody.
I don't think that we should suppress legitimate information for "marketing" purposes. But making a big deal out of this for "marketing" purposes MAY not turn out to be the right strategy either.
3) I may be missing something, but I don't think that it's unethically (from a professional or moral standpoint) to give drugs that have been approved by the FDA (or other countries' governing bodies) to people off-label for any purpose.
I feel pretty strongly about this, because at one time I was helped TREMENDOUSLY by a drug that was considered dangerous enough to get a black box warning. This was 1998, fairly early in my CFS, and I was having severe mood swings. I tried a wide variety of drugs and approaches, all of which were ineffective or had major side effects. Then I found out from a fellow patient about a tiny-scale study that was going on with the anticonvulsant, Lamictal. It sounded so promising that I got one of my more acquiescent doctors (not the one specializing in psychopharmacology) to prescribe it for me. Miracle cure! No more mood swings at all, for a dozen years. No side effects. Eight years later, the psychopharmacologist had this drug as the #1 on his list of things to try for patients with my symptoms. That's a whole lot of years of my life that would have been even more unbearable than they were just with the CFS.
(Of course, like ALL my other health problems, this one turned out to go away with mold avoidance. Now I don't need that drug at all. But it certainly helped at the time.)
I know what it's like to be desperate. I was at that point, late in my active CFS in 2007. I was even more like that in 1998, when I was suffering from both classic CFS and the mood swings, and feeling actively suicidal a high percentage of the time. Having people say that you shouldn't try something because it "might be dangerous" when things are that bad is at the very least frustrating.
Sweeney Todd: "These are desperate times, Mrs. Lovett, and desperate measures are called for." If people can survive day-to-day with CFS, or manic-depression, or anything else without feeling desperate - or even without feeling like life is pointless - then that's great. But when we get to a point of desperation, or even that our life is slipping away to the point that it's unacceptable to us in terms of our core beliefs about what our time on earth should be like, that's something else.
I think that those who try things that some would consider to be "controversial," and that are hard, are not only achieving the possibility of gains for themselves but also contributing something of value to our knowledge about the disease.
The main impetus for my having pursued this trip down the rabbit hole of extreme mold avoidance is not just because I wanted to get well, but because I believe that the process of doing this sheds light on what's happening in the disease. Similarly, Mike Dessin has endured a whole lot of crap as a result of talking about his approach (and neural therapy is plenty painful itself, as I well know from my experiences), but his having done that has given us more knowledge that may be useful in general. Dr. Montoya's experiments with Valcyte may not have proven to be a "cure," but they've shed various light on the disease (e.g. that addressing pathogens early on is more effective than doing so later, that many of the direct effects of the herpes family viruses are cognitive) as well.
I think the same principles apply to the antiretroviral drugs. Or to stem cell therapy. Or to Rich van K's approach (which, by the way, is not painless either).
People need to make informed decisions about risks. They need to weigh the pros and cons with regard to their own lives.
But insofar as they make their own decisions about what to do, as free and consenting adults, with regard to doing things that are not illegal, it seems to me that we should honor those decisions.
And I, for one, applaud them for their valor.
Best, Lisa
