The Singh paper was yet another study where an apparently decent scientist proved beyond a shadow of a doubt that she couldn’t find XMRV in anyone. Or at least that she couldn’t find a VP62 plasmid clone in any CFS patients or controls. But since she did not use a human isolate as a positive control, her results are meaningless. She also proved again that a test derived from monkey antibodies to a VP62 clone doesn’t detect anything in humans. What she didn’t prove is that XMRV and other similar viruses are not infecting humans and she certainly didn’t prove anything that doctors or patients should care about with respect to their treatment decisions. That she would presume to comment is outrageous.
It hurts more because she seemed to be our friend. I met her in Reno last August. She was very excited by our responses to antiretrovirals, chosen because of her in vitro drug testing paper. Interesting that she was able to find XMRV in human tissue when she was studying prostate cancer in 2009 (XMRV is present in malignant prostatic epithelium and is associated with prostate cancer, especially high-grade tumors. Schlaberg/Singh). Odd that she so recently applied for a broad patent with respect to the virus. Then she stabs the WPI, a collaborator, in the back. Very peculiar behavior. My best guess? Follow the money.
In my opinion, the scientific community is still asking the wrong questions. It is important to validate the original work of course, but that is a very small part of what needs to happen. Given that it is obvious from the pathology that we are dealing with one or more previously unrecognized retroviruses, most likely simple animal retroviruses that jumped to humans in some way, the correct question is, which virus or viruses? Not how do we make this one go away so we can all go back on coffee break, rather than recognize the public health disaster in front of our noses. Pretty poor performance, even for government work.
Since the science is progressing glacially, it is not possible for me to evaluate what antiretrovirals are doing for me now, having taken Viread and Isentress for more than 14 months. However, I am approaching 90% of function this week, still in Hawaii. I have been out every day, most of the day, for 12 days. I went snorkeling (a little). I have walked up some steep hills. I have had no PEM. Only very brief episodes of feeling sick, which are not severe and pass quickly. I am eating, sleeping, dreaming normally. I am not short of breath at rest, or even with reasonable exertion. I am very deconditioned, but feel like I can start a measured program to get back in shape. I am choosing upright and the usual energy calculation that runs through my head when I think about whether to get up or not isn’t happening.
I do think it likely that this latest improvement has something to do with the change in altitude; I became polycythemic when I moved to Santa Fe, which is at 7500 feet. I could exercise and was never short of breath without appropriate exertion before that. It will be interesting to see how I do when I go home this week. It may be that going back up will be good too, due to epo which is anti-inflammatory. Athletes know that going up and down is the hot ticket. I’ve been thinking about transitioning to the islands since I left in 1981, but never seemed to be able to make it happen. Our son is finishing up the 11th grade, doing really well, and we are committed to keeping our home in Santa Fe at least until he graduates. But life is full of possibilities again beyond the bed and the couch. My life has improved immeasurably from the positive XMRV culture I received from VIP Dx a year ago January.
Sleep architecture is an important indicator of severity of illness in ME/CFS, certainly for me, but for many others as well. I had been sleeping better for some time before this trip, so the improvement I’m experiencing isn’t all from palm trees and tropical air. It is hard for me, currently beating the odds (knock on wood), to believe that antiretrovirals are hurting me. Though it is possible that I have improved further from going off AZT, I still believe that it helped me in the beginning. It should be remembered that an efficacious treatment paradigm may turn out to be completely different from what has evolved for HIV. It may be possible to take antiretrovirals for a time to knock it back, clean out reservoirs, in conjunction with other things that are conducive to proviral latency. Even inhibiting replication, provirus is sitting there silent, or waving in the breeze. Our knowledge of HIV suggests there are things we can do to encourage latency. Our observation of the disease over decades has taught us that the balance can be tipped in our favor in various ways. Working with the internal and external environments is crucial for recovery.
As for Dr. Singh’s desire to practice clinical medicine? I guess she thinks this patient should not be allowed to continue his meds. From my email this morning:
I tested positive for XMRV. I have been taking zidovudine, tenofovir, and raltegravir for just over 5 months. I started over a 2 1/2 month period and I was on all three by January. Since the end of January, I have experienced very short periods of unmistakable clarity and no symptoms (much more pronounced compared to any period of reduced symptoms that I may have experienced in the past twelve years that I have been ill).
I wish I could report that Ali is doing as well as I am. She didn’t change noticeably one way or the other from stopping AZT. She is in no way as sick as she was when we started this journey. She is stable, but still just below the surface. She has been having some MCS symptoms recently. We are going to step it up again, considering mild HBOT, Meyer’s cocktail/glutathione IV’s and possibly Nexavir. Ali has inflammatory skin stuff and Nexavir is indicated for skin problems; always good if a therapeutic option addresses more than one problem. She only needs a small additional increment of improvement to be able to get a life again. She is hoping to experience Hawaii too. Neither of us would stop the things that have helped, Actos, Deplin, B12, vitamin D, bioidentical hormones. Nor do we have any inclination to stop antiretrovirals, certainly not on Dr. Singh’s say so. We have done too well on them so far to rock that boat. We need to keep building on our gains.