I was pretty sick when I wrote my end of the year post. Right after I wrote it, I came down with an upper respiratory infection that I am still recovering from. The rest of my family now have it too. I’m not back to where I was a month ago, but I am approaching function again. This episode has reminded me of how grateful I am not to feel like that all the time anymore.
My Hard Truths post hit some readers like a wet blanket. In particular, there are some patients who are noticeably improved after a couple of months of treatment and already feel that antiretrovirals are worth it for them. Ali, who was the skeptic when we began, has been reminding me of how much better we are than when we started. I was most definitely writing from a place of personal disappointment, having gotten so close to where I need to be for productivity. Perhaps I was feeling the need to say something to moderate the enthusiasm I expressed months ago, since it clearly is not a slam dunk, at least for patients who have been sick for a long time. Perhaps I was expressing my frustration that this far into it, the science has not progressed enough to enable adequate assessment of what the drugs are doing, but neither Ali nor I have any thought of stopping them.
We do unfortunately find ourselves back in that place of “fiddling around the edges” as a friend put it in an email. My New Year’s resolution was to get serious about supplements again (I have difficulty swallowing pills), in the hopes that it will be more productive now that we are healthier. In the early years of my illness supplements and botanicals were more noticeably effective than they have been in recent years; maybe they will be again. I have been struck by the fact that any intervention mentioned, no matter how benign, seems to have made somebody worse, including supplements. Personally, I have never found a supplement to be anything worse than useless.
It still seems intuitively obvious to me that preventing infection of new cells is a good idea. The drugs we are taking, that have tested against XMRV in vitro, interfere with early stage replication events only. They do nothing to prevent provirus from producing viral product and fueling persistent immune activation. The HIV model continues to fit very well, complemented by what we know about simple animal retroviruses. Here are a couple of good papers about HIV that also shed light on the downstream effects of XMRV/HMRV’s:
Antioxidant protection from HIV-1 gp120-induced neuroglial toxicity. Walsh
HIV-1 viral proteins gp120 and Tat induce oxidative stress in brain endothelial cells. Price
Another MLV paper that fits our evolving model:
Activation of Transcription Factor Nrf-2 and Its Downstream Targets in Response to Moloney Murine Leukemia Virus ts1-Induced Thiol Depletion and Oxidative Stress in Astrocytes. Qiang
Here is an interesting, well referenced paper (unpublished):
HIV infection in children – neurodevelopmental (autistic) outcomes and clinical pathologies – and their correlations to idiopathic autism. Lozac
My opinion is still that patients have the right to consider antiretrovirals as one of their treatment options. My goal here is certainly not to aid the considerable forces that want to shut down that option in any way, but to have it be an informed decision in light of the anecdotal evidence that we do have. It bears repeating here that doctors do this every day with less evidence and much more dangerous drugs than the drugs under consideration here. What must be said is that the response to antiretrovirals has been mixed, though there has been some success. It does not appear that anyone has been harmed. I still believe that there are compelling reasons to consider antiretrovirals for certain, but certainly not all, X+ CFS patients.
There continues to be tangible progress towards making the WPI’s vision of collaborative science and medicine a reality. There were lots of curve balls in 2010, but it’s a new year, if not a whole new ballgame. We are gaining momentum. A team is assembling. We finally know how to think about the disease. A coherent approach to treatment is within reach at last. There is a rapidly evolving framework for considering the needs and best options for an individual patient. We have an unprecedented opportunity for scientists and doctors to work together to move our understanding ahead as quickly as possible: understanding to translate into clinical successes. The obstacles are considerable, but failure is unthinkable. Breaking new trail is never easy, but was there ever a group of patients who needed new trail more desperately?
~ Ralph Waldo Emerson