My trip to Reno was very productive. Energizing even. No crash this time (knock on wood). The nuts and bolts of the practice are getting worked out, but the exciting part to me is the synergy of like-minded people with complementary talents and skills. Never have I been exposed to a work environment where everyone is so passionate about what they are doing and why. All for one and one for all.
I am tolerating the stress pretty well. I bounced back from my crash/viral infection following my last trip fairly quickly. I regularly have waves of symptoms, but at a level where I can ride above it most of the time. The work is actually providing some escape from the physical reality of the illness. It’s a bit like carrying around a ball and chain all the time, but it reminds me to keep looking for the key to unlock it. For me, the illness is like living with a very strict Zen master. If I engage in any serious hand wringing, I get a rap across the knuckles. Emotional PEM (post exertional malaise) is almost instantaneous for me. Tough teacher.
Ali is not doing as well as she was a few months ago. I can’t even tell you if she is better or worse than when she started antiretrovirals, because some symptoms are still better, but she has new ones (inflammatory). It is not at all clear why she has taken this downturn. She is considering holding AZT to see if things are better, worse or no different without it. We don’t have clinical evidence that both RT inhibitors are better than one and AZT toxicity could be contributing to the energy deficit. Anecdotally, tenofovir has a clearer positive clinical effect than AZT. There are a few people who are improved on tenofovir alone and AZT alone seems to have little clinical impact. We experienced the most obvious improvement from antiretrovirals when we added tenofovir as a third drug. Ali’s gut feeling, and mine, is that AZT is not what is making her worse, but the drug has a short half life and it shouldn’t take long to see if she gets a lift when it clears her system. There are a few people that I know of who have stopped AZT for suspected side effects or mild anemia, but they are back on it or considering being back on it. I have heard of only one patient that stopped it for profound anemia requiring epo. At eleven months, we have no signs and have heard no reports from others of changes consistent with lipodystrophy or muscle atrophy. The only clear sign we have of toxicity is the expected macrocytosis and compensatory decrease in red cell number. However, there are a couple of patients who report improvement on tenofovir and raltegravir without AZT, probably an easier regimen to tolerate for the long haul if effective.
One of the things I’ve learned about the lay of the land is that scientific research happens in individual labs that generally don’t share with one another. The credit and intellectual property issues preclude much cooperation. I have a great deal of trouble with it, because real collaboration between scientists that wanted to help each other might illuminate rather than obscure the truth. Physicians are similarly isolated, but the reasons are different; it’s more about being over-worked, unsupported and disengaged. For most, the reasons why they became doctors are no longer anywhere in sight.
People write and ask me if I agree with this or that piece of the politics, but the medicine and science is all I can handle. As an observer, I am struck by the divisiveness in the ME/CFS community, when so many worthy common enemies abound. I am a newbie to the politics. I diagnosed myself when I read the Science paper, fifteen years into my illness and six years into my daughter’s. I am not typical of ME/CFS, by history or current clinical picture. I could still exercise for the first ten years of my illness and my symptoms were primarily neurological and vascular. Ali had a history of acute Lyme and subsequent crashes which responded to antibiotics. Neither of us had a viral onset. Childbirth and puberty were our triggers. The revelation was not about having a diagnosis of CFS. It was about having a retrovirus. That realization cleared up much of the mystery for me. With everything I’ve learned since, I still believe we are suffering from the effects of one or more retroviruses. A sad reality, but also our best hope. In the end, it will be about having an infectious disease, not a syndrome with a terrible stigma. Personally, I’d rather be a leper, than a psychotic malingerer. And with that happy thought, is there some way for us to put aside the internal strife and turn our attention to our common goals?
Bench-to-bedside is a translational research term used to describe the process by which the results of research done in the laboratory are used directly to develop new treatments for patients. The close relationship between the research lab and the clinic should take it still farther – the clinical findings will drive the direction of the research. Dr.’s Mikovits and Lombardi are committed to this kind of collaboration. In fact, an interdisciplinary blending of ideas has already begun. We are learning to speak each others’ languages. The camaraderie engendered by being down the hall from one another will nourish all aspects of the real work, which is to heal the patients.