I wasn’t sure what the answers were to those questions, but I did feel the gratitude that I felt working with Frances suffusing my life. Despite my fear about the future, the immediate present had a lot to offer. Even when I was too weak to move—often—I could take comfort in a peculiar feeling of rightness about my life, right there, in bed, in my trailers, on my land, with my dog. I could fling the door open and look out from my bed toward the stream, I could catch wafts of butterscotch scent from the ponderosas, I could listen to the chatter of the birds.
When I thought of everything I wished I could be doing—the stories I longed to write, the hikes I longed to take, the people I longed to be with, the children I longed to have—I grieved. But I found that I could control how hard I pressed against those griefs, allowing them to wash in and out like the tide without drawing too much of my concern or energy.
All my life, an ambition had driven me, a feeling that I needed to accomplish things, to find my place in the world, to make use of all the gifts I’d been given. But those goals and dreams were currently so impossible that their prick had dulled. And I was astonished to find that a gentle gratitude lay underneath, all the time, like a drum beat, like my own heartbeat.
I could look at my house that I could no longer afford to live in, occupied by a renter, and feel the agonies of years earlier. When Geoff was at his sickest and I was struggling to finish the house, I commented to my therapist that I felt like I could no longer hear God’s voice. I didn’t imagine that some great old man in the sky had ceased whispering in my ear, but I did feel like the attunement I had spent my life developing had somehow led me to a dead end, like I could no longer feel my way forward along the invisible thread I had been following, hand over hand.
Gradually, over the decade since we’d split up, I’d started to realize that throughout Geoff’s illness I’d heard God’s voice perfectly well—I just hadn’t liked what it had said. What it said to me was, “Suffer.” It said, “Hurt without understanding. Be broken. Let all of this pain pour through you, and let it change you.”
These years of illness had allowed that message to seep between the cracks in my psyche and make a kind of sense I couldn’t grasp back then. So much of the pain I experienced then was a result of outrage. I insisted that my suffering had to make sense, that I must be able to control it, that it must be an outcome of a mistake I’d made and would vanish once I corrected it. My rage grew out of my conviction that I had power in the situation, a belief that looked pretty silly now that I no longer had the ability to even lift my head. At this point, suffering felt like just one more experience to be attuned to, as valuable and welcome as joy or silliness or excitement, if far less fun. And I found that when I stopped resisting my suffering, I had more room for other things, like my pleasure at training Frances or at listening to the stream.
This acceptance that had grown within me gave me a source of comfort and strength in dealing with this stupid, formless, misunderstood illness. I had an invisible cord to follow, and I was willing to continue through whatever bog it threaded through. Just as I had survived both my mother’s illness and Geoff’s illness and was beginning to see how they had opened me and made me bigger, I would survive this illness, I would survive the breakdown of science, I would survive the hypocrisy and prejudice. And in the process, I’d become more fully who I was.
CHAPTER 10
THE CIRCUS
In November, I received an e-mail from an editor at the online publication Slate, asking if I wanted to write a story for them. The theory that the retrovirus XMRV caused ME/CFS had recently been debunked. That wasn’t so shocking, but what happened next was: Judy Mikovits, the researcher who had made the claim, got fired—and then she was arrested for stealing her own laboratory notebooks and was at that moment sitting in a California jail cell. The editor wanted a piece explaining what the hell was going on.
I’d been groaning as I watched the situation degenerate into farce. XMRV had finally gotten serious, mainstream scientists to pay attention to ME/CFS, but now the whole thing was becoming a circus that only deepened the impression that some contagious craziness was seeping out of the pores of ME/CFS patients and tainting anyone who touched them.
To my eyes, though, the current absurdity looked like a natural and not terribly surprising outcome of the nasty politics and history of the disease, which I’d been learning about in the last months. I’d finally read Hillary Johnson’s Osler’s Web, which describes the disease’s history between the mid-80s and the mid-90s. It changed my understanding of what I was grappling with and transformed how I saw the XMRV story.
So I took the Slate assignment eagerly, just hoping that my body would hold up long enough for me to get the story written.
The roots of the XMRV circus, to my mind, went back to at least 1985, when the Centers for Disease Control and Prevention began to investigate a mysterious outbreak of a peculiar illness around Incline Village, Nevada, near Lake Tahoe. A pair of doctors, Paul Cheney and Dan Peterson, had seen about 150 cases of what they believed could be a new disease.
Osler’s Web described how, along with nearly unimaginable, crushing fatigue, the patients experienced an astonishing array of other odd and debilitating symptoms: They got dizzy, they broke out in rashes, their guts didn’t work, their hair fell out, light hurt them, their hearts pounded, their vision blurred, they couldn’t think straight, they had seizures. Some were too ill to walk or even to speak. Despite the severity of the illness, standard lab work on the patients was mostly unremarkable.
But when the CDC investigators arrived in Incline Village, they quickly became skeptical. The illness looked nothing like ordinary contagious diseases. Plus, their investigation quickly got stymied on a practical problem. The first step in probing any apparent epidemic was to develop a working definition, a set of symptoms common to everyone who had the illness. Investigators could then use this to determine who their patients were. Ordinarily, that step was easy. But in this case, the patients’ symptoms were all over the place: While they all had extreme fatigue, one might have rashes, a sore throat, and swollen lymph nodes, while another was throwing up and having seizures. Some of the patients didn’t even look all that sick.
Also, the investigators were trained to be suspicious of purported epidemics. Clusters of illness often happen purely by chance. The classic analogy to explain that is to imagine firing a shotgun at a wall from a distance. Inevitably, there will be a few tight groups of buckshot appearing at random in the constellation of holes, even though there’s nothing special about those spots on the wall. Similarly, one expects to find that from time to time, lots of people will get sick in a particular area, just by chance. Enormous resources can be wasted chasing after apparent contagions that simply don’t exist.
So after a cursory investigation, the investigators concluded that the only epidemic in Tahoe was an epidemic of diagnosis, not disease. The doctors, they decided, had simply “worked themselves into a frenzy,” Hillary Johnson reported in her book.
Eventually, Peterson and Cheney managed to dig up some objective abnormalities in their patients by using less-common tests: Patients had white speckles on MRI brain scans indicating lesions, their immune systems were altered in ways that had never been seen before, and they lost as many as 40 IQ points, almost entirely in nonverbal skills. To the doctors, this was incontrovertible evidence that these patients were truly sick.
The CDC was unimpressed, though, because none of these abnormalities were consistent across all patients.
Then the illness failed to vanish as the investigators expected—it was popping up in Los Angeles and San Francisco; in rural Yerington, Nevada; around Boston; in Ottawa, Canada; and elsewhere. (I found this puzzling as I read about it in Johnson’s book. What is the deal with epidemics of ME/CFS? I’ve never heard of one recently. Do they not happen anymore? Or is no one paying attention?) The doctors treating these patients didn’t need objective tests to persuade them the disease was real
. Dr. Byron Hyde in Ottawa, for example, told Johnson that the disease was “simple to diagnose—there is no disease even vaguely like it.”
One might imagine that at this point, the CDC would start taking the illness seriously, since it wasn’t politely going away as a good illusory epidemic should. But in fact, this is the point where things really started going wrong. The agency’s dubiousness had already crystallized. When the CDC received a deluge of frightened phone calls from the public after the press started writing about the illness, it only increased the belief that the whole thing was a manufactured hysteria. Frustration about the protean nature of the symptoms rapidly curdled into downright contempt.
Johnson reported that around this time, the main CDC investigator of the mysterious disease posted a letter on his door, making fun of an imagined patient. “I would like a list of recommended treatments . . . in descending order of trendiness, including acyclovir, gamma globulin, WXYZ-2, 3DOG . . . alternating sensory deprivation and walking on hot coals, purified fruit-bat guano injections, and bed rest.” The letter concluded, “Please inform me about how to get social security and workman’s compensation benefits for the above diseases. I have had them for over forty years now, and I am only twenty-nine years old.”
Under pressure from the public, the CDC developed a case definition for the illness. The symptoms they required, fatigue plus a selection of such things as sore throat, swollen lymph nodes, muscle pain, and weakness, were sufficiently common that no one knew how many patients were being captured that didn’t have the same disease at all. But the widely varying symptoms among patients made it difficult to come up with something more precise.
The disease probably wasn’t new. Doctors connected it to “myalgic encephalomyelitis,” a term coined in 1956 to explain a similar-sounding disease that occurred in clusters: in a Los Angeles hospital in 1934; in Iceland in 1948; in Adelaide, Australia, in 1949; in the Royal Free Hospital in London in 1955; and more. Symptoms varied, but they generally included extreme exhaustion, tender lymph nodes, sore throat, pain, and neurological problems suggestive of encephalomyelitis, the inflammation of the brain and spinal cord.
The CDC knew about these similar illnesses, but the investigators nonetheless chose a new name: “chronic fatigue syndrome.”
The illness was cropping up in the United Kingdom as well, equally confounding and frustrating British doctors and researchers. Simon Wessely began publishing papers on ME/CFS in 1988, and reading one, I felt like I was reading PACE’s ancient ancestor, the Lucy of psychiatric ME/CFS studies. He argued that patients simply got out of shape after having come down with a virus, and they needed help getting over their fear and getting more active.
The National Institutes of Health, which funds and leads most of the nation’s health research, had its own contribution to the problem as well. At that point, the pattern that is nearly universal with poorly understood diseases began playing out: ME/CFS was declared to be psychosomatic.
Peterson contacted Stephen Straus, a leading researcher at the NIH, and asked him to examine some of his Nevada patients at the NIH hospital. Peterson selected several patients with abnormal brain scans, immune system abnormalities, dramatic weakness, pain, and cognitive dysfunction. Straus sent each one home with the declaration that they were suffering only from psychiatric problems, Johnson reported.
Then, in 1989, Straus published a study claiming that most ME/CFS patients were mentally ill. Newspapers nationwide picked up the press release, with headlines such as this one in the Washington Post: “Chronic Fatigue Linked to Psychiatric Troubles.” None of the stories noted that the study consisted of only 28 patients. Nor did they point out that out of the 21 patients who “had been or were currently affected by psychiatric illness,” only 10 had such problems before getting ME/CFS, and of those, eight suffered from simple phobias, such as a fear of heights. The stories didn’t comment on the lack of a control group or the prevalence of depression and other mental problems in all chronic illness (one study put it at 70 percent in AIDS patients). In most news stories, the only source quoted was Straus himself, who became the most commonly quoted expert on ME/CFS for many years to come and who became a lasting advocate for the psychiatric view. The reporters certainly didn’t talk to Cheney, who told Johnson, “Straus’s article is an absolute lie. . . . There is a very conscious attempt to misrepresent the data.”
Straus’s study was the first example of a species of science that thrived for decades, culminating in the PACE trial. Even if these studies had been good—and they weren’t, suffering from the same kinds of flaws as Straus’s study—I was struck by how astoundingly unhelpful this psychiatric approach was. It sure as hell wasn’t going to help me get better—though perhaps it would reassure healthy people that the disease was nothing to worry about. And it had certainly done a fine job of discouraging doctors from taking the disease seriously.
On top of that, the CDC made a hash of the physiological research by developing and pushing a definition of the disease that was absurdly broad, capturing 2.5 percent of the American population. It quadrupled the number of patients from the definition in widest use at the time. That happened just as doctors and researchers were pushing in the opposite direction, trying to narrow the definition to avoid capturing patients who really had major depression, for example. Under this new, broad CDC definition, 38 percent of people diagnosed with clinical depression qualified as having ME/CFS. Expanding the pool of patients in this way made it harder to find physiological abnormalities and easier to find psychological ones, and it made it impossible to compare studies using different definitions.
Along with guiding research into ME/CFS in psychiatric directions, the federal agencies starved it for money. In the 1990s, Congress gave the CDC money specifically for ME/CFS research, but the CDC used that money for other purposes and then lied to Congress to cover it up. Osler’s Web revealed this misuse of funds, leading to an investigation by the General Accounting Office.
The NIH joined the starvation game. For years, the NIH had been spending around $5 million a year on ME/CFS research, when the illness was estimated to affect a million Americans—five bucks a patient. I could root around in my couch cushions and find more than that, I thought. No wonder we know so little about this damn illness. By comparison, multiple sclerosis, which is similarly devastating, was getting nearly $300 per patient in research funding each year.
Reading about ME/CFS history in Osler’s Web made me feel a little bit like a victim of Hurricane Katrina—a natural disaster had walloped us patients, followed by a highly unnatural one. The societal structures I had assumed were there for me were not. Being sick sucked, but being told it was my own fault because I was psychologically fucked up and that my disease wasn’t worth studying was enraging.
The whole ME/CFS community was stewing in that sea of rage, and every long-term patient had to work out how to deal with it. For myself, I found it helpful to study the entire mess like an anthropologist, moving beyond repugnance at individuals like Wessely into a detached analysis of our medical and scientific systems.
I saw the same pattern unfold with other poorly understood diseases. Ulcers, for example, were viewed as the result of a driven personality until the bacteria that causes them was discovered. Multiple sclerosis was viewed as the result of neuroticism until imaging showed the breakdown in the sheaths protecting the nerves. And other diseases we currently do not understand well—post-treatment Lyme disease, fibromyalgia, multiple chemical sensitivity, Gulf War illness, mitochondrial diseases—developed the same kind of political problems that ME/CFS had.
My conclusion was that the messiness of these diseases confounded many ordinary scientific processes. And then scientists, who are commonly drawn to their fields because they like clarity and certainty, often respond by pushing the illness into the semi-scientific realm of psychosomatic illness. That dismissal sets up a self-reinforcing network of interactions. Researchers, doctors, and the public all view the illnes
s with scorn; research funding isn’t made available; academic researchers become disinterested; medical societies spread bad information; doctors don’t know how to best treat their patients. Each element weaves around the others, tightening into an inescapable knot.
The most likely solution, as I saw it, was to gradually, patiently work on each rope in the knot, digging in fingernails to produce tiny movements, tiny bits of space that might eventually allow everything to start moving again. I started creating that space internally, just by working to bring acceptance and compassion and understanding to the whole mess. Each infuriating situation I read about became an opportunity to digest my own rage, to absorb the energy contained within it and to let its poison move through and past me. I thought of my mother’s notion that our tiny, personal struggles are cosmically linked to planetary ones. I wouldn’t say that my efforts to deal with teasing in fifth grade had had any effect on the Soviet war in Afghanistan. But if nothing else, I took comfort in the idea that this personal work, which I felt I needed to do in any case, might in some way extend beyond the confines of the trailer I was lying in, day after day.
And in a concrete way, independent of any cosmic connection, that internal work had readied me to write this article for Slate. I could bring the compassion and understanding I had worked so hard to build inside myself to my readers.
Annette Whittemore found her own way to turn her rage and desperation into treasure for others. For 20 years, her 32-year-old daughter had suffered from ME/CFS bad enough to leave her housebound, with frequent seizures. Whittemore faced the same Gordian knot I and other patients did, with her beloved daughter strangling at its core.
The wealth and connections she had developed as a real estate and gas developer gave her a sword that she hoped just might, if she wielded it carefully enough, slice through the whole tangle. She established a scientific institute to blast past the lack of governmental support and find some answers. She named it the Whittemore Peterson Institute, honoring Dan Peterson, the pioneering clinician from Tahoe, who collaborated with her on the project.Ch10-1
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