Eight years ago, collapsed on a neurologist’s examining table, I asked a naive question that turned out to be at the center of a controversy continuing to this day. I had just received a diagnosis for the illness that had been gradually overtaking me for the previous six years, and I asked, “So what is chronic fatigue syndrome?”
A week earlier, I’d woken up suddenly barely able to walk. “Fatigue” hardly described what I felt: “Paralysis” was more like it. My legs seemed to have been amputated and replaced with tubes of liquid concrete, and just shifting them on the table made me grunt like an Olympic weightlifter. Not only that, my very bones hurt. Most disturbingly, my brain felt like a swollen mass. Speaking required tracking down and spearing each word individually as it scampered away from me. I felt as capable of writing an article about science – my job – as of slaughtering a rhino with my teeth.
My neurologist’s face was blank as he pronounced, “We don’t understand it very well.” He could recommend no tests, no treatments, no other doctors. I came to understand that for him, “chronic fatigue syndrome” meant “I can’t help you.” My neurologist’s understanding of the illness closely reflected that of most doctors, who typically believe two things about CFS: that it’s probably psychosomatic, and that there’s nothing doctors can do for these patients. Experts have known otherwise for decades. The result is that while patients don’t get the help they need, they often do get a helping of scorn.
The Department of Health and Human Services (HHS) has launched an effort to change these misperceptions, it says, arguing that the problem goes back to that very first question I asked: What is chronic fatigue syndrome? There are currently many competing definitions, and none of them has trickled down to doctors. So HHS has hired the Institute of Medicine, an affiliate of the National Academies, to develop yet another definition of the illness. The stated hope is that doctors will embrace a definition developed by such a prestigious institution and then learn about treatments.
But the CFS community of experts, advocates and patients has responded to this plan with a revolt. Fifty specialists in the illness (nearly all of them) wrote to HHS requesting cancellation of the contract, and hundreds of patient advocates and thousands of patients wrote in support of the experts. And unfortunately, this is just the latest in a long string of disputes between the federal agencies and the CFS community, disputes that have nearly derailed the central work of understanding a disease acknowledged by all to sometimes be as disabling as late-stage AIDS or heart failure.
At the time of my diagnosis, though, I was far too consumed with learning to cope to worry about the politics of CFS. A couple of weeks after my trip to the neurologist, I woke up feeling better enough to venture to the grocery store. By the time I put the bags in the car, though, I was quivering with exhaustion. That night I was too weak to turn over in bed. Overexertion, I realized, was my enemy, so I began a program of aggressive rest. Gradually, I got stronger and the limits lifted.
But over the next five years, I got worse again, then better, then worse. I consulted doctors, but when they couldn’t help much, I stopped. Each time I was stuck in bed, I scoured my activities, my diet, my environment, seeking a reason. Ultimately I concluded my illness might have been controlled by the Greek gods, creatures more irrational and capricious than the human mind can comprehend.
Then in 2011, I disintegrated. Day after day, I couldn’t get out of bed, couldn’t work, couldn’t even focus my eyes to read a novel. I flew across the country and staggered into the office of Dr. Nancy Klimas, an immunologist and CFS expert at the University of Miami. She smiled and said wryly, “Your legs aren’t working too well for you there! We should be able to get you feeling better.” I nearly cried.
She told me that although CFS didn’t yet have a cure, she and other researchers had discovered a lot about it. At that moment, many thought the retrovirus XMRV might be the cause, though she was growing skeptical and soon thereafter the theory was disproven. Regardless, she told me, she and her fellow researchers were certain the illness wasn’t psychosomatic. The physiological abnormalities in CFS patients were too consistent for that.
She soon confirmed those patterns in me: Some parts of my immune system barely functioned, while others were in overdrive. Several viruses had become reactivated in my body, causing mischief long after the initial infection was past. My heart couldn’t manage to pump enough blood to my brain when I stood up: After six minutes of standing still, my blood pressure fell to 80/52, my heart raced, and I begged to lie down lest I vomit or pass out.
One test I declined, the two-day exercise test. When CFS patients exercise to exhaustion two days in a row, their output plummets the second day though they work just as hard. In addition, their bodies flag at using oxygen, inflammation goes wild, and their very cells change, reading their genes differently. That pattern, called exercise intolerance, seems unique to CFS. The test can help prove disability and provide objective guidelines patients can use to regulate their activities, but it can also leave them even sicker for months.
Though Klimas couldn’t cure me, she helped. She gave me immune modulators so my immune system wouldn’t overrev as though I were fighting an eternal flu. She worked to improve my sleep. She prescribed beta blockers to steady my heart rate when I stood. The most effective treatment was astonishingly simple: Gatorade. Electrolytes increased my blood volume – typically a liter low in CFS patients – thereby stopping my blood pressure from dropping so dramatically. She also monitored me for cancers common in CFS patients, since our natural killer cells, the immune system’s designated cancer assassins, barely function.
I improved enough to work a little bit, and it was a tremendous relief to have a knowledgeable and compassionate doctor behind me. Still, Klimas (who also treats HIV/AIDS) says if she had to choose between having HIV and CFS, she’d unquestionably choose HIV. Two decades of well-funded research have made HIV a manageable chronic illness, while her CFS patients often remain disabled.
I was extremely fortunate to get such competent care. There are a dozen or two US specialists to treat the one million Americans with CFS, and most non-specialists are as hamstrung by lack of knowledge about the illness as the neurologist who diagnosed me. Somehow, doctors haven’t gotten the word that CFS is a physiological illness with physiological treatments that help. Once I grew so sick that the illness dominated my life, I couldn’t get the question out of my mind: Why?
Go to Part 2.
Julie Rehmeyer is a math and science writer in Santa Fe, NM. She is a contributing editor for Discover Magazine and has written for Science News, Wired, Slate, Science, and other publications. She is working on a book about her experience with ME/CFS and the science and politics of confusing illnesses. She recently wrote about her father for Aeon.
The photos are stills from a movie about ME/CFS, called Canary in a Coal Mine, by Jennifer Brea, Deborah Hoffmann, Blake Ashman, and Kiran Chitanvis. The stills are captioned, in order, Jen After a Full Day of Shooting, and Jen’s Wall of Mysteries.