After ten months of being sick, I came back to New York, hoping the change alone might help me get better. I had improved enough to walk short distances, to carry a light bag of groceries a block or two if necessary, to sit at my desk for reasonable periods. I was still hazy, flat out exhausted, plagued by joint pain, nightmares, fevers and depression — in short, still ill. Nevertheless, I was intent on exploring the CEBV story in the East. Initially, it seemed none of my friends had heard of my peculiar ailment; one suggested it was psychosomatic. “When I have writer’s block,” she said, “I feel exactly the same way.” After our conversation, I found myself calmly removing her listing from my Rolodex and tossing it. But then an old graduate-school friend who is a producer for a national TV news show in Washington, D.C., indicated on her Christmas card she had been ill for six months. With a feeling of dread, I called. After struggling with an unidentified malady for five months, she explained, she was diagnosed as having CEBV by a physician who specialized in the disease. She had barely been able to hide her intellectual debilitation from her colleagues, she said; she spent her weekends sleeping. She was, she added, “a basket case” at dinner parties. There was good news: she was beginning to feel better. The same day, I made a Christmas call to a girlhood friend who also lived in Washington. She told me two young lawyers in her husband’s firm, both women, had come down with CEBV at about the same time. Each was forced to leave work; one returned in a year’s time; the other, still sick, had given up practicing law.
Later, I got a call from a journalist who is a contributing editor at several magazines. She had heard about my illness through a mutual friend. She described her own year of ill health, which began while she was on assignment in Paris: she came down with an illness that was diagnosed as the flu. Her doctors had eventually considered the possibility she had Hodgkin’s disease. They were still unable to identify her problem, but fortunately she was recovering. Although she had many symptoms of CEBV, her physicians were puzzled by her low level of antibodies to the Epstein-Barr virus. She wanted to know what I had heard about HBLV (human Blymphotropic virus), an immune-system virus discovered last fall by Robert Gallo of the National Institutes of Health (NIH), in Bethesda, Maryland; it was considered a possible cause of CEBV. And a newspaper reporter called, referred by a mutual friend. She had been ill for three months with an endless flu, she said, had missed a great deal of work and was beginning to suspect CEBV. She had called a CEBV support-group leader on Long Island to inquire about medical specialists and was horrified when the woman told her she had been sick for five years. “It was unbelievably depressing,” she said. “I could barely finish the conversation.” I understood. I couldn’t bear to talk to people who had been sick longer than I had, either; it was too threatening, and it was one reason I had little interest in joining a support group. When I told the reporter that I had been ill for nearly a year, she sounded almost accusatory: “But I was told you had recovered!”
Although researchers at the Centers for Disease Control (CDC), in Atlanta, Georgia, had been unmoved by CEBV when it was simply a Nevada anomaly, their view had changed considerably in the interim, as I discovered when I called Carlos Lopez at the CDC soon after Christmas. Lopez is the chief of the herpes-virus division at the agency, but eighteen months earlier he had been a research scientist at Memorial Sloan-Kettering Cancer Center, in New York. “To tell you the truth,” Lopez said, “one of the things that got me most interested in the disease were the calls we used to get about it at Sloan-Kettering from patients or their parents. Some of the stories you hear are real tear-jerkers. And it turned my head. When I came here, I wanted to look into this more.”
If little else, the agency had learned from its Nevada investigation that the Epstein-Barr virus was an unlikely cause of the illness at Incline Village, according to Lopez. Therefore, the CDC was certain that the syndrome was something other than chronic mononucleosis, a rare disease known to be caused by the Epstein-Barr virus. “This is, absolutely, a different syndrome,” he said. “Which suggests that we’re looking at something that is of a different cause.”
“Which suggests to you it is a new disease?” I asked.
“That’s correct,” Lopez said. The CDC’s intent, he said, was to develop a clinical definition of the disease, one that would rule out such maladies as autoimmune problems and malignancies, which have similar symptoms, in order to set up a surveillance network.
The agency was acting on another front, as well: the microscopic battleground of cells and viruses. Its researchers were trying to isolate HBLV in patients with CEBV. Incredibly, the CDC’s virologists had discovered yet another herpes virus in the white blood cells of a sampling of AIDS patients. “We don’t know if it’s related to HBLV, but it’s a herpes virus,” Lopez said. Human herpes virus type 6, as the CDC called its find, is under investigation as a possible cause of CEBV.
One mild day in mid-january, I boarded a train for Boston to see Anthony Komaroff, a stocky, black-haired clinical epidemiologist who is the chief of general medicine at Brigham and Women’s Hospital, a teaching hospital affiliated with Harvard. Ten years ago, Komaroff began to suspect the existence of a chronic-fatigue syndrome, but he said he was unable to find research collaborators who considered it “a plausible illness.” The doctor put aside his interest in the subject until 1983, when, once again, he saw a patient who seemed to have the complex of symptoms Komaroff thought might be a disease syndrome. In 1985, he began to discuss the disease with Paul Cheney, the physician who was treating nearly 200 CEBV patients in Incline Village. Several months later, Komaroff went to Nevada. Eventually, he was among the first physicians Cheney asked to collaborate with him. Komaroff has responded by creating his own network of researchers, including scientists at Harvard Medical School, the University of Massachusetts and NIH. Komaroff’s CEBV patients number 150; he receives over fifty telephone calls, telegrams and letters a week from people diagnosed with CEBV who are seeking his expertise.
“I can’t begin to see them all,” he said, “so I’m screening. I see only a sampling. But in the first year and a half I was studying this, no one knew I was working on this problem. And the patients I saw just kind of happened into my practice.”
Komaroff and I met in his roomy office in the hospital, where he placed a comfortable wooden chair in front of his large, dark wooden desk and sat in it to breach the distance between us. He struck me as a kind of Eastern version of Paul Cheney: compassionate, intellectually rigorous and drawn inexorably to scientific inquiry. “We have received some very small grants from foundations and private individuals,” Komaroff said, “but basically the bulk of [our research] is being paid for by midnight oil. It’s costing us all a lot of money.” When I asked him why he was so committed to studying CEBV, he said, “Because I think it’s going to turn out to be a very important problem. I think it’s not been taken seriously by a lot of people. But I think it will be, rapidly, in the next six to twelve months.” Later he said, “It may be chat the people we’ve seen are just the tip of the iceberg. And that others with less fatigue, less of the cognitive problems, are reasonably common and don’t even themselves think they are sick. They may assume it’s the effects of getting older, or that they’re not staying in shape, or whatever the excuse. Of course, I could be dead wrong.”
Like Cheney, Komaroff had been unwilling to dismiss his patients’ complaints as psychosomatic or hypochondriac. “The reason [Cheney] and I have taken this more seriously than some of our colleagues,” Komaroff said, “is because we knew some of these people very well. And we knew their families. We knew something clear and dramatic had happened to them. But what’s most persuasive to me is to listen to the average [CEBV] patient, and in my experience, eighty percent of them say nearly the same thing, which is, ‘I was perfectly healthy, I had worked very hard, I was a jogger, I was a high-energy person, and then, one day’ — and they always seem able to pinpoint the day or the week — ‘I came down with what seemed to be just a regular cold or flu, but I never recovered.”‘
Beyond his intuition, however, Komaroff believed that patients with CEBV provided objective health data “that are just not normal and are not caused by depression or anxiety,” including unusual white-blood-cell counts and slightly abnormal results on liver-function tests. “Recurrent sore throats, recurrent swollen glands, low-grade fevers? That is absolutely not the picture of depression of anxiety. I say listen to the patient. The patient is telling you what’s wrong with him: ‘It’s a virus.”‘
The day before I met with him, Komaroff had spent several hours with Robert Gallo’s virology team in their lab at NIH. The visit led him to doubt that it would be proven soon that HBLV causes the syndrome. Herpes viruses are common, he explained; ninety percent of human beings have at least one herpes virus permanently in their body. To implicate HBLV as a cause, researchers would have to prove that CEBV patients are infected with HBLV “much more often than people who feel perfectly healthy.” So far, HBLV had been found in about half of Komaroff and Cheney’s patients. Unfortunately, Komaroff said, the NIH group was finding HBLV in close to the same proportion of healthy people. But the tests for HBLV, Komaroff said, remain crude and undependable, because of the enormous difficulties scientists have encountered in their efforts to grow the virus. Only better tests, he said, will prove or disprove the HBLV theory.
Komaroff was more willing than Cheney to entertain the idea that stress or chemical toxins may play a role in the disease. “I think some people might — with stress, or even with environmental toxins — reactivate latent Epstein-Barr virus in their body, and that may make them ill. But I think the bulk of the cases are going to turn out to be caused by either a new strain of Epstein-Barr virus or a new virus that reactivates Epstein-Barr in some people. . . . My gut feeling is there is something out there that’s been there for a long time, but something has happened in the last ten years to make it occur more commonly.”
Komaroff was adamant, however, that CEBV was more than a yuppie disease: “I’m convinced that it hits all socioeconomic groups and all races.” He seemed equally certain that the disease was widespread. “I think the problem is not restricted to any geographic region — I think it’s everywhere. The question is how widespread. If it were affecting as much as one percent of the young adult population, that would be a major problem.”
My heart in my throat, I asked Komaroff for his prognosis for CEBV patients. “I’m pessimistic about a treatment that would fully eradicate this condition,” he said, “because of the biological abilities of the viruses I think are involved.” He inhaled deeply. “My model for this disease is a war. And like any war, I can imagine it being won conclusively by one side or the other. Either the person becomes completely well, or the virus wins, leading to complete deterioration of the body. But my feeling is that either victory will be a very rare event. I see the war just continuing.”
Imagining the Iran-Iraq conflict being played out in the cells of my body, I decided to go to Washington. I wanted to know what the government was doing about this catastrophe that had befallen me and so many other formerly productive members of my generation and, in particular, my sex. I found Stephen Straus, who is the chief of medical virology at the National Institute of Allergy and Infectious Diseases, in cramped offices at the end of a corridor on the eleventh floor of an NIH research facility. Straus, a blond, surprisingly youthful-looking man, authored a by-now-famous 1985 paper linking the Epstein-Barr virus to a fatigue syndrome. He had been studying CEBV for five years. I quickly realized that Straus was not going to be my angel of mercy.
“There are people who are relatively poor and can’t work and have few support systems who write me or call me up and who are quite desperate,” Straus said, his tone matter-of-fact. “And there are people who have extraordinary resources, who are very successful, accomplished individuals, who feel they have a special right to be seen by socalled experts, who call me up and are quite desperate. The problem is, I can’t do much for any of them.”
Straus and I roamed the dull-green hallways of the building, passing AIDS labs with red warning symbols on their doors, looking for a quiet nook where we could converse in privacy. I stupidly hoped it wouldn’t be in an AIDS lab. Straus had a gruff manner, which at odd moments gave way to sympathy. “Whatever hypothesis one chooses as the basis of this syndrome,” he said, sounding impatient, “there are people who are hurting.” As we walked, he said, “I arrived on the staff here at NIH in 1979 committed to virologic research. I was open to relatively interesting questions as they would arise.” What arose rather quickly was a young man with recurring mono and chronic fatigue.
“Things started snowballing,” Straus said. “By early ’84 I had seen some thirty odd patients with the syndrome. At this point, I’ve evaluated over a hundred here, and I probably turn away a dozen or more physician referrals a day. . . . I don’t know if it’s an epidemic.” By now we were seated in a tiny, windowless reference library. “What I can tell you is that my phone rings off the hook, that we get a tremendous number of letters that distract me from doing things I’d like to do and that many very critical, imaginative, scholarly physicians and scientists around the country also are seeing patients with this disorder.”
Straus was more circumspect in his musings on CEBV than either Cheney or Komaroff. But at its heart, his idea was the same. “My working hypothesis,” he said, “is that a virus has triggered [an immune-system abnormality] and that a virus may be playing a role in perpetuating it. Of course it’s possible the infectious agent is gone or has no role to play in perpetuating that immune imbalance. But the imbalance is now set in place and can’t set itself right. But there are many other reasonable hypotheses, all of which are testable.” For Straus, the Epstein-Barr virus was the candidate he was most interested in pursuing as the immune-system saboteur. “But there could be many viruses,” he said. “If you presume that a virus could trigger this abnormality, then any virus that can cause acute infection could be a possibility.”
At the end of our interview, Straus said, “Some people cope with this disease better than others. It has to do with attitude. Patients who accept the fact that they have a chronic disease and do the best they can — instead of tearing their hair out about it — are much happier. And do well.” As we walked back to Straus’s cramped quarters, where even younger scientists under his command were analyzing properties of the Epstein-Barr virus, I felt so ill and weak I wondered if I would make the distance on two feet. How, I wondered, could I ever accept what was happening to me? Instead, I wanted to grab Straus by the lapels and tell him about my ravaged career, my shrinking bank account, my hypnotic crawl toward a self-imposed isolation. As if clairvoyant, Straus turned to me and said, “Just be glad it doesn’t seem to be degenerative. It probably won’t get any worse.” In his tiny office, he offered me hot coffee and chocolate doughnuts, which I turned down regretfully. I mused on a world where the healers thrive on sugar and caffeine while the sick limp through their days with infusions of vitamins, minerals and Evian water. Nothing seemed fair or reasonable anymore.
CEBV has been a boon to healers in and out of the realm of orthodox medicine, including orthomolecular physicians, who attempt to treat the disease through megavitamin therapy, as well as psychiatrists, psychologists, psycho-immunologists, herbalists, hypnotists, homeopaths, nutritionists, acupuncturists, acupressurists, faith healers and even purveyors of snake venom. A huge community of holistic and spiritual menders has evolved with the AIDS epidemic. It’s hardly surprising that CEBV patients are beginning to turn to that community and are also investigating some recently developed metaphysical therapies for cancer. “I think,” Stephen Straus said, “that the more physicians become confronted with [CEBV] and pay attention, the more they will recognize that there is a group of patients who have certain needs which have not been satisfied and for which there aren’t clear answers.”
Not that some physicians haven’t tried to help. Often, however, a nostrum’s benefit seems to lie in its ability to distract. In Let’s Live magazine, an orthomolecular physician from Solvang, California, wrote that some of his patients reported improvement after following a regimen he prescribed, although he pointed out that the program is not a cure for CEBV. He suggested that the afflicted should eat meals consisting of small portions from eight food groups and give themselves injections of liver, folic acid and B-12. Unquestionably, following this regimen might take your mind off your suffering. At CEBV clinics in L.A., therapies range from stress-reduction techniques to antidepressants.
According to Janet Dale, Stephen Straus’s research nurse, who performs the soul-sapping job of counseling the CEBV patients under Straus’s care, nearly seventy percent of her exhausted flock have tried some kind of treatment on their own. “You get the gamut,” she said. “You get patients with lysine treatments, nystatin treatments for candidiasis, psychotropic drugs, megavitamins, gamma globulin — all either without success or with varying degrees of success, but nothing lasting long term.”
Among the “therapies” that have been recommended to me are relaxation tapes, Zen meditation, yoga, wheat grass, spirulina, imaging and visualization, tryptophan, lecithin, macrobiotics, mantras, crystals, intravenous vitamins (all kinds), acupuncture, acupressure, biofeedback and cod-liver oil. One Los Angeles woman, a thirty-two-year-old hospital administrator, told me that she improved substantially after a year’s time by meditating, undergoing Chinese herb therapy, eating high-protein breakfasts and tapping several minutes a day on her thymus gland — the so-called seat of the immune system, located behind the collar bone — and repeating “affirmations,” such as the phrase “I profoundly and deeply accept myself just the way I am.” What finally cured her, she said, was spending $3000 and three weeks at a local “detoxification” spa where clients combine bicycling and saunas with vitamins. I report this regimen with the utmost sympathy. Until I had experienced the unrelenting nature of the disease, I couldn’t have imagined the desperation that drives its victims to experiment with even the most outlandish treatment in the fond hope it will return them to that state of grace, health.
Surrounded by this maelstrom of nontraditional experimentation, the medical establishment faces a void: next to nothing is known for sure about treating CEBV. A spate of scientific papers is in the pipeline, undergoing the rigorous formality of peer review, and will spew forth in the coming months and years. Outside academia and the laboratories, however, physicians are faced with patients who, as Straus said, “are hurting.” But to most busy general practitioners, CEBV is just a rumor on the horizon or a jumble of misconceptions.
“It’s really important for patients to see doctors who specialize in this,” said Neil Singer, a San Francisco internist with 230 CEBV patients, many of whom have come to him through word of mouth. “I see people who are almost at their wits’ end, who have lost faith with the medical profession and who clearly have a real illness. But you can’t fault doctors who miss this diagnosis. Unless you see the pattern over and over again, you won’t recognize it. You can only fault them if they say, after they can’t come up with an answer, ‘It’s all in your head.”‘
San Francisco, with its brisk climate and perpetually clean air, is an incongruous site for an epidemic. Yet a number of San Francisco physicians, Singer included, were frequently seeing the CEBV pattern in their patients. I had called Singer because I was curious how doctors on the front lines, the orthodox healers without the luxury of research money and time, were responding. I knew he was using aggressive drug therapy — primarily acyclovir, an antiviral agent — in treating the symptoms. Singer’s second line of defense was B-12 injections, “to modify damage to the nerve cells.” He was also prescribing Elavil, an antidepressant that not only helps CEBV patients sleep but seems to diminish CEBV’s neuralgia, its aches and pains. “Obviously,” he said, “if there were good medicine to treat this, there wouldn’t be three or four ways to treat it.”
Singer’s thinking has evolved in the two years since he saw his first CEBV patient. “This is definitely a syndrome caused by a virus that we’re as yet unable to test for,” he said. “I think it’s possibly a new agent that’s capable of affecting people only at a certain time. It hits you when you’re down. Major stress allows it to manifest itself. Three people have told me they got sick after having operations. Others talk about emotional trauma. Your immune system can only fight off so much. When you have more stress placed on it by stress itself, or an additional infection . . .”
As he spoke, I remembered that my Washington friend told me that her illness began shortly after she had minor surgery and that her father, to whom she had been very close, had died that year, too. When I really thought about it, I realized that most of the people I knew had described their CEBV onset as the culmination of a period of stress or difficulty. My own life, prior to my illness, was filled with deadlines, recalcitrant interview subjects, bone-crushing travel — the standard vicissitudes of journalism. Clearly, I had underestimated the toll.
Another San Francisco internist gaining prominence for her interest in CEBV was Carol Jessop, a specialist in women’s health problems who is associated with the University of California at San Francisco. Jessop saw her first CEBV patients — 4 of them — in 1983. When I interviewed her last December, she had 150. “Many of them don’t know anything about my interest in this problem,” she said. “They just walk in.” The morning I visited Jessop at a women’s health clinic where she saw patients two days a week, she had diagnosed a woman with CEBV who was referred to her for suffering fatigue and spontaneous abortions.
Jessop, who reported she had CEBV patients with low incomes as well as high, patients who were under twenty and over forty, insisted that CEBV is “not a yuppie disease.” “That kind of thinking,” she said, “makes patients feel like their illness is their fault because they’ve been successful and now they can’t handle it. And that’s something that’s always put on women anyway: ‘If you had just stayed home! You obviously couldn’t handle it, so now you’re sick.”‘ Nonetheless, the doctor admitted that most of her patients were in their thirties and forties and more were female than male. At odd moments in my musings I had wondered if the disease was a manifestation of the wide-scale misalignment of women’s responsibilities and energies. Was CEBV a disease striking the overachievers of my sex? Jessop confessed she could only speculate about why women seem more prone to the disease. “Viruses do not pick one sex over the other,” she said. “So the only way you can explain it is that the person responds to the virus differently. We know women’s immune systems are different than men’s. Women have a higher prevalence of autoimmune disorders and a kind of charged-up immune system. Women respond perhaps differently to this kind of viral event. And I would attribute it to hormonal differences.”
In Manhattan, I found another CEBV specialist just blocks from my apartment. Irena Brus, a diminutive internist and hematology specialist and assistant professor of clinical medicine at the Mount Sinai Medical Center, has been treating CEBV patients since 1982. “Usually,” she said, “they are professionals, with accomplished careers and happy marriages, who suddenly become debilitated, bedridden.” Currently, three-quarters of the patients in her practice are suffering from CEBV. Some have come to her from Canada. Brus, who has researched the disease in collaboration with physicians in Atlanta as well as at NIH, had done considerable thinking about the syndrome. One revelation, unearthed in collaboration with her colleagues, was that CEBV patients had abnormally low levels of “neutralizing” antibodies, important viral combatants. As a result, Brus had begun administering gamma globulin, a substance made from pooled human blood products that stimulates immune function and is a good source of neutralizing antibodies, to a handful of her most seriously afflicted patients on an experimental basis.
After nine monthly intravenous injections of gamma globulin, Brus said, “some people have been helped, and some have been temporarily helped and then have relapsed. There has been no lasting improvement.” She asked her patients to keep strict reports on their health during the trial, using charts on which they graded the severity of ten CEBV symptoms on a scale of one to ten. “These were very intelligent people,” Brus said. “One of them” — she reached into her drawer to show me a graph measuring the response of a thirty-seven-year-old lawyer to gamma globulin — “he has been sick for four years. He had to leave his work, which he loved. He’s very bright, although he’s disabled now, living on disability.” I imagined this bright young lawyer languishing in an apartment somewhere in Manhattan, watching the world pass outside his sooty windows, raging against his fate. The lawyer’s graph was jagged, but it reflected a steady rise in activity over a period of six months. “There were some relapses, but he felt fantastic over the months here,” Brus said, her finger moving over the page until it came to a dramatic demarcation. “And suddenly, after seven months, he’s going down again.”
At the end of a mostly one-way conversation filled with elaborate scientific theories and chronologies, Brus became intent on communicating something else. “I would make a strong point that the fact that we do not have a laboratory finding or a full explanation of what causes this disease does not mean that it does not exist,” she said, apparently unaware she was preaching to the converted. “We have to fight this trend. The history of medicine shows us that the clinical description preceded for years — sometimes hundreds of years — our understanding of the mechanism of a disease. There is a group of people who deny the existence of this. And it’s really a philosophical problem.”
For Paul Cheney, evidence is nearly incontrovertible that the disease is new and spreading fast, probably by means of a new herpes virus, perhaps HBLV. “The very existence or CEBV support groups — rising out of practically nothing to over 200 now in a very few years — is one factor,” he said. “Secondly, an epidemic occurred among forty-year-olds. You would no more expect an epidemic in forty-year-olds with a herpes virus, if it were an ancient virus, than you would expect an epidemic among forty-year-olds of chicken pox. Thirdly, if this were an old disease, how could we possibly have missed it for all these years? There are a large number of patients who are subtle and may not be that sick, but there are a large number of patients who are really quite incredible, and I just can’t believe that the medical profession could have watched this — missed this — for decades, or millenia.”
Last winter, Cheney addressed a large CEBV support group in Incline Village. He was fresh from meetings with his collaborators at NIH. He brought with him startling news about chickens. “We think we know where HBLV may come from,” Cheney told the assembled CEBV sufferers and their families. He explained the virus was probably not a new hybrid of two existing herpes viruses, or “recombinant,” because antibodies to all the other human herpes viruses failed to “recognize” it. It probably came from an animal, Cheney continued, either a primate, because they’re closely related to humans, or a domestic animal, since we live close to them. Gallo’s group, Cheney reported, tested HBLV against herpes viruses in Old and New World primates, without luck. But then a researcher reported that the human HBLV antibody appeared to “recognize” a well-studied herpes virus afflicting chickens: Marek’s chicken virus. “If in fact Marek’s chicken virus turns out to be related to HBLV,” Cheney said, “then we can learn a lot about HBLV by looking at what happens in chickens.”
Cautioning the audience that his line of reasoning was hypothetical, Cheney enumerated the properties of Marek’s chicken virus, eliciting gasps and giggles from his audience, and for good reason. “Small chicks and old chicks do not get this disease as much as middle-aged chicks,” he said. “Female chickens are much more likely to become ill than male chickens. . . And stress plays a role, too. They’ve actually studied this. How do you stress a chicken? Vaccinate it, de-beak it, fire off loud noises. They’ve been able to increase the expression of disease in chickens by stressing them. I think many of you who may have this disease are aware of what stress factors may do to your disease.” Finally, Cheney said, “Marek’s chicken virus causes lymphoma in chickens — in some cases, it can wipe out eighty percent of a flock. We think HBLV may be associated with non-Hodgkin’s lymphoma in humans. And interestingly, the Los Angeles Times reported that between 1972 and 1984 there was a 222-percent increase in non-Hodgkin’s lymphoma in California. And this is a rare cancer.”
There was another startling statistic about the chicken virus: its prevalence among chickens is close to the prevalence of the Epstein-Barr virus in humans, which is ninety percent. “Similarly,” Cheney said, “I believe HBLV could achieve a prevalency rate of ninety percent. The best indications are that it is less than one-third of that in some places at the present time. Therefore, we could be only one-third the way there in terms of case production of this disease.” Five percent of the people in Incline Village who show evidence of infection with HBLV appear to have a chronic illness attributable to it, Cheney added. “Five percent of 240 million Americans — that’s about 12 million people who could have this chronic disease in time.”
It occurs to me that once the demographics are better established, we may find we are experiencing an epidemic in which the people at risk will be defined not by their drug habits or sexual activities but by their age, their response to stress and, possibly, their personality. Not long ago, I spoke with James Jones, a physician at the National Jewish Center for Immunology and Respiratory Medicine, who wrote one of the first papers describing CEBV syndrome. “Even among those patients who have not achieved high levels of education or professionalism,” Jones said, “there are comparable personality traits. They’re aggressive, they’re intelligent, they’re goal oriented. Is there a premorbid personality trait that’s involved in this? That’s a question that needs to be addressed.” I have another question: What is the equivalent, in contemporary human society, of de-beaking and involuntary vaccination?
If a killer like AIDS could have sprung from the African green monkey, perhaps it is no less astonishing that a virus partial to chickens could cause us to lay down our precious careers and fast-track lives and hurl us prematurely into a kind of callow old age. Yet, as Paul Cheney says, “One has to wonder: What is occurring? Why is this happening?”
Recently, I had a long conversation with a thirty-year-old man who has had CEBV for six years. He became ill in 1981, one year after graduating from college, where his major had been premed. Eventually, he scrapped his dream of attending medical school and becoming a doctor. He founded a support group in his native Southern California. It has grown from fifteen members to “well over a hundred” in a year’s time, but he’s dropped out. The effort was too emotionally overwhelming, he said, and in fact he asked me not to give his phone number to other CEBV patients. “I’m only interested in talking to people who have the power to raise money for research now,” he said. He admits that he is obsessed with CEBV and spends an average of ten hours a week on the telephone with a network of about forty researchers. Recently, he was one of eight people in the world with the disease to commute to Italy for a costly experimental treatment. “It’s not working,” he said in a flat voice on the April day we spoke. He works as many hours as he can as a stockbroker and recently bought his own small plane after getting his pilot’s license. Often, he fantasizes about taking a year or two off. Maybe he could get well, he said, if he could just do nothing at all.
“My spirit has started to wane after so many years of being sick,” he said. “The longer it goes on without my getting well . . .” He didn’t need to finish his sentence. We compared symptoms. He said, “I feel, all the time, the way I used to feel after drinking fifteen beers the night before and getting up after a few hours’ sleep.” I remembered what a serious hangover felt like; the analogy was so perfect that I laughed. “Of course,” he said, “what would have cured me back then was a five-mile run on the beach.” He pressed me to include in my article a recent break-through that one of his research contacts reported regarding HBLV. The researcher had had success growing the new virus in Jurkat cells, human T cells. “If you report that,” Carson said, “there are researchers all over the country who will see it, and maybe then we can all get well faster.” He spelled Jurkat for me, then said, “Be sure to say that sodium butyrate and phorbol esters increase the yield.”
Later, I asked if, since becoming sick, he had ever had moments of feeling okay. “Only when I’m flying,” he responded. “When I’m flying, I feel completely well.”
I would like to report that, in contemplating my own progress, I strive to accentuate the positive, but my mood is more frequently black. Friendships have disintegrated. I am single, but I understand divorce is a not uncommon result of CEBV. How does one explain a disease that doesn’t show, can’t be measured and, as a consequence, is erroneously attributed to the patient’s willful gloom? “That is an opinion not shared by anyone who works with these patients and sees this problem,” Paul Cheney tells skeptics in his profession. Yet a doctor paid by the state of California to determine disability claims recently asked me prior to his examination if I was depressed. “Yes,” I said, fully prepared to tell him why. But he interrupted me, speaking as if to a small child. “When we get depressed,” he said, “we sometimes get tired.” And with little further discussion, he referred me to a psychiatrist.
Still, when I clear away the frustration and bitterness, I can appreciate that I am getting better. A year ago, I often was unable to raise my head off my pillow; now, on very good days, I can huff along with the Jane Fonda exercise video that is geared to middle-aged people and those with sports injuries. Transformation from invalid to wimp in twelve months isn’t bad, I guess. Perhaps someday I will feel completely well.