Coming up on eleven months after publication of the Science paper, sadly my email (which includes treating physicians) is still my only source of clinical information besides what’s happening in my own household. It would appear that fewer than twenty people have tried antiretrovirals for X infection. Of those, about a third are at least some better (on one to three drugs), about a third are not better (on one or two drugs) and about a third didn’t tolerate the drugs long enough to learn anything. As far as I know, no one has been harmed.
When I decided to write publicly about my experiences, I already knew that the drugs were having an impact on my illness. But I also knew that it didn’t mean that in the long run this would be the way CFS or any other X related illness would be treated. I believed that reporting the experience had value whatever the outcome.
It did seem that tenofovir had a positive effect for both of us. There is of course no way for me to know if it was the tenofovir by itself or tenofovir as a third drug. I started it once and went off due to a flare of symptoms, then back on at half dose for a week, before going up to full dose without problems. It may be that with this patient population, it will be necessary to finesse the drugs. Start low and increase as tolerated.
There is a narrow-mindedness in the scientific community, insisting on an orderly progression through a stepwise scientific process with which everybody should be patient while it unfolds in some proper way. To that I say, we’ve been incredibly patient, some for as long as twenty-five years already, while the epidemiologists have ignored the obvious epidemic in our midst. If this many chickens had been getting sick due to a new retrovirus, they would have figured it out. In the future, I’ll write about some of the work that has been done in the world of animal retroviruses in the last few decades. The level of metabolic detail as to transmission, restriction factors and pathogenesis that has already been elucidated there is both hopeful and dismaying at the same time. While the humans with a new retroviral infection languished and transmitted it to others, animals have gotten quite a bit of attention. Of course they euthanize cats. At any rate, many clues for us there.
These are not new drugs. We have twenty-three years of experience with them in HIV. We know the side effects pretty well by now (several million patients have taken them). We are simply using them in an attempt to treat a newly discovered retrovirus. We do that in medicine every single day – try an existing drug for a condition for which the drug was not originally intended. It still seems common sense to me to do what we can to shut off the virus, until we know more, which looks like it will be quite a while. We have a right to try treatment in the meantime. Happens everyday in the real world practice of medicine. The reasons for resistance now, have more to do with politics, money, self-interest and inertia, than what is in the best interest of patients. As usual.
If it is possible to treat it even partially now, think how much suffering could be averted. Already another year is gone. The lost potential in my inbox alone is staggering. Reclaiming that potential should be a national priority. We don’t even know the magnitude of the problem. We have the technology. But even if all resources were brought immediately to bear, it would likely still be a bitch to treat. As things are, it appears progress will depend on people being afraid of catching something. Worked for HIV. And then, when the testing is together, the drug companies will smell the money. With any luck. We are so overdue.