It’s been a very strange and unusual three years. The Lipkin study was the closing of the door opened by the Science paper in October 2009. For me, the shift from thinking about neuroborreliosis to retroviral causation for ME/CFS led to clinical decisions that have resulted in great improvement for both Ali and me. We are not well, but we are both leading full and meaningful lives, within the confines of illness. Existing within the confines of illness means the same thing for us that it does for other people with disabilities who need accommodations. It does not mean trapped in endless suffering with no help in sight. Prior to the fall of 2009, Ali and I spent a few really grim years couch bound together, wondering if a quick merciful end wouldn’t be a good thing. Now we are working and going to school. We are even playing some. We need to do it “our way”, but it is happening.
My personal journey through the world of XMRV was littered with betrayal and abandonment, so in a sense, I’m glad that part of it is over. I’m left to practice medicine much as I did before, but with new insight. Three years of reading retrovirology has changed my view of many things, medical, scientific and political. I’m in Hawaii right now treating two young ME women. Much of what I’m doing is a refinement of what I did in my last practice a decade ago. My own emotional adjustment to the collapse of the science involves accepting that the tools I have now are all there is likely to be for a long time. There isn’t going to be a cure and it is a long way off before conventional medicine has anything better to offer than what’s listed on the Mayo Clinic site: sleep meds and antidepressants, which many of us don’t tolerate. Not even pain meds or anxiolytics. Exercise and therapy, because we are so overly focused on our symptoms. Back on the trash heap.
So where’s the redemption in this story that makes it worth writing about? ME, or ME/CFS, or CFIDS (since I’m a lumper, not a splitter) is a relapsing, remitting illness. It can be coaxed into remission. Remission doesn’t mean normal or healthy. It means not suffering so much. It is a process of encouraging healing and discouraging inflammation, requiring a gentle, multi-pronged approach that relies on synergy, tinkering and luck. Find some maneuvering room, a key for the lock. It is possible to stop the downward spiral, tip the balance and start the slow climb out. Unfortunately, there is never a uniform response to a given therapy with this illness, so treatment can’t be formulaic. When recovery does start, it is slow and fragile. It must be nurtured and it takes years, that from personal experience, since I have only been back in practice for a little over a year. Although, I have heard of spontaneous recoveries many years in, most involve hard work and careful choices. One thing I know for sure. There was never a patient population less suited to medical heroics.
Meanwhile, I sit here in the weird position of being better and still apparently improving on Viread for 2 1/2 years. I was so bad 4 years ago, nobody expected me to do anything productive ever again. Ask my ex-Lyme doc. I had a sleep disorder to rival any of my readers and I know some of you have pretty spectacular sleep problems. I now sleep normally. Even normal dreaming has returned in the last 6 months or so. My gut is also functioning normally on a modified SCD diet, 6 years after emergency surgery for a small bowel obstruction and a Crohn’s diagnosis. My intractable peripheral neuropathy pain, which once required opiates, is now little more than background noise except at the worst moments. PEM is reduced, but still problematic. I can exercise a little, being careful not to overdo, because it feels good in the moment. I won’t list Ali’s symptoms, but she is similarly improved on Viread and Isentress. Her horizons are ever expanding, her illness less and less restrictive. Have we done other things at the same time? Yes. Will antiretrovirals for ME/CFS be studied at all? Not a chance. Our government just spent a couple of million dollars to ensure that ideas like mine stay marginalized.
Dr. Lipkin was quoted on the IMEA FaceBook page in response to questions about whether any “positives” were found, “The investigators reported results as positive or negative according to their own criteria. The only requirement was that once criteria were established results could not be changed through modifications in criteria. I know this is not the intention of those who continue to pose these questions; nonetheless, the impact of this continued challenge to work of the team is that some people in the scientific community who might contribute are becoming reluctant to work on CFS/ME.” Yet, at the press conference, he encouraged us to advocate for ourselves more effectively. So we need to ACT UP, but be nice about it. Any ideas? We are a group in desperate need of effective advocacy. It’s not only the middle aged going down. There is a tidal wave of young people. They are not as visible as their autistic cousins, but just as profoundly disabled. Who is going to care for them when their parents are gone? We need to start advocating for them effectively now.
Life’s A Long Song by Jethro Tull