"Roll Call"

Excerpted from Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic
All of the interviews below were conducted in late 1995. Remarkable to these accounts is their ultimate commonality no matter gender, age, and circumstance.



Copyrighted Material © 1996, 2008 Hillary Johnson
All Rights Reserved
Not To Be Excerpted or Reproduced Without Permission of the Author

ROLL CALL



Introduction

Chronic fatigue syndrome, or myalgic encephalomyelitis, is a disease from which few people recover completely, though some portion may improve over the course of years. Even among those rare few who claim recovery or substantial improvement, the transforming nature of the disease remains manifest; these patients inevitably describe a series of adjustments or realignments of goals and expectations that would have been unthinkable prior to the onset of their illness.

In The Clinical and Scientific Basis of ME/​CFS (Canada: Nightengale Research Foundation, 1992), Byron Hyde, Sheila Bastien, and Anil Jain describe the phases of the disease in broad strokes. In the “early chronic stage,” lasting from one to six years, they write, “the physical and medical aspects start to merge with the psychological aspects of the disease…During this period…many patients show a very slow and uneven period of recovery and readaptation to their altered state of central nervous system, muscle and social function. Recovery should not be confused with adapatation.” Any degree of “rehabilitation” in these early years will depend on many things, including the social supports available to the patients—helpful spouses and families, in particular—their degree of brain injury, their intellectual assets and levels of education prior to falling ill.

“Many patients in this stage of illness will not recover sufficiently to enjoy either work or social activities,” the authors continue. “[This stage] is marked by major changes in their life pattern. Unstable marriages will become increasingly destabilized, and marriage breakdown and divorce will occur. Money reserves will have been liquidated…the social confines of poverty may have set in, and the patients, most of whom will have had life and social expectations set at a higher level, will now see those hopes and expectations destroyed. It is difficult for a physician, in a fifteen-minute visit, to relate to this change…It is the period when students and youths and some adults will be most prone to suicide.”

According to these authors, the “late chronic stage”—beginning after the sixth year of illness—is a period about which the least was known medically and socially. Nevertheless, they write: “These patients tend to be forgotten. They have adjusted to their altered abilities…Despite their previous relatively high earning ability, many of the ME/​CFS patients will have become poor, long out of the work force, with no appreciable disability insurance. They…can become street people. They tend to no longer be recognized as having a post-infectious disease process. It is our opinion that far from ME/​CFS simply being a disease of the upper middle class, many of those who fall ill as children, adolescents, and young adults become a significant portion of the chronic poor” (pp. 25-37).

The following patients (presented in alphabetical order) are all now in the late to chronic stage of ME/​CFS, having fallen ill during the pandemic years of the middle to late-1980s. Three have died, one by suicide. Most, though not all, report improvement in the form of adaptation, having achieved a degree of forebearance and acceptance.

DARRELL ANDERSON


A former real estate consultant who was fifty-two when he fell ill in 1984, Anderson was featured in a 20/​20 piece in 1986. He described the suicidal fantasies he experienced when his family and friends refused to believe he was sick. Nine years later, in 1995, the disease had extracted its social and financial toll: Anderson is estranged from his wife and children and surviving on disability support from the Social Security Administration. “If you can get up one day and take out the trash, and the next day you can’t stand up without falling over, your family wonders, ‘Is this real or not?’—especially when you’re the breadwinner.” Anderson says he is “somewhat” physically improved, although he continues to suffer “Alzheimer’s-like intellectual problems." But he adds, “I cannot allow the word ‘hopeless’ in my vocabulary anymore. I will not allow myself to be degraded by my circumstances.”


NOMI ANTLEMAN


A CFS victim since 1980, Antleman, who was also interviewed for 20/​20, remains totally disabled. “When CFS made the cover of Newsweek in 1990,” she says, “I thought, Now I can die happy. I thought things had to change. But there’s been no real progress. We’re where we were five years ago.”


ONORIO ANTONUCCI



“Andy” Antonucci, a girls’ basketball coach and algebra teacher for nearly three decades, was among eight teachers who shared a cramped teachers lounge two hours a day at Truckee High in 1985, and nearly all of whom acquired the disease in the space of several months. In 1988, after numerous failed attempts to resume teaching, Antonucci, then in his mid-fifties, officially retired and moved to Albuquerque, New Mexico, to be near his mother. He subsists on a reduced California teachers’ retirement pension. The Truckee teachers’ 1985 lawsuit against the school district for workers’ compensation has so far been unsuccessful. Now, sixty-two, Antonucci says, “I’ve got maybe three or four hours a day in me, as long as it’s nothing physical or demanding.”


GLORIA BAKER



Baker, a real estate saleswoman from Riverside, California, had suffered from CFS for a decade when she moved to Incline Village, Nevada to become one of the original Ampligen recipients in 1989. She chose to go off the drug in 1992. In October 1994 she committed suicide.


IRENE AND LAURIE BAKER



Baker, a Truckee High civics teacher, came down with CFS in the spring of 1985. Since 1989, she has been able to work full-time without experiencing major relapses, and she currently claims a 90 percent recovery from the illness. She teaches fifth grade in Truckee. Her daughter, Laurie, who fell ill at roughly the same time, experienced full recovery within a year.


CRAIG BARSHINGER



Although he has experienced substantial improvement since falling ill in 1985, Barshinger says he “feels normal” two or three days a year. On those rare days, he adds, “I don’t even believe it happened to me.” The rest of the time, he continues, “It’s like something has snagged in the biochemical knit, like a sweater caught on a thorn, and you want the release the sweater and get on with your life, but you can’t.” Remembering the early, more severe years of the illness, Barshinger says, makes him “break out in a cold sweat. It’s like any life trauma, I suppose—like surviving an airplane crash or a concentration camp.” Now thirty-eight, Barshinger sold the company he founded—a firm that made computers to help prevent divers from getting the bends on deep dives—eight years ago and moved to St. John in the U.S. Virgin Islands. He works as a consultant for his former company. “On January 29, 1989, I woke up feeling absolutely normal for the first time,” he recalls. “It lasted a week. Before that, I wasn’t sure I wanted to live out a normal life span.”


STEPHEN BEALE



An Episcopal priest who fell sick in 1984, Beale abandoned efforts to continue a conventional priesthood in 1994. After suffering a relapse that resulted in ten days of hospitalization, Beale bade his parishioners in Woodland, California, farewell and moved to San Francisco, where he counsels CFS sufferers by telephone and lobbies politicians for research funds. “I’ve been through hell,” he says. “But I’m still a priest. I’m doing priestly things. You could describe me as ‘medically retired.’” State chairman of California’s Youth for Reagan in his adolescence, Beale also confesses, “I’ve become a raving liberal.”



SALLY BENTSON (PSEUDONYM)



Along with her mother, Nevada resident Bentson was invited by federal scientists to come to the NIH for study in 1986 when she was twenty-two. Bentson’s arm was badly scarred during an anesthesia-free muscle biopsy, performed at Stephen Straus’s request. “You become desperate for answers,” she says of the experience. (Straus has yet to provide the test results to her.) Bentson’s symptoms have diminished, but at age thirty-one, she continues to suffer fatigue and depression, and in 1994 she suffered a severe relapse that necessitated a three-month leave from her job. Antidepressant medication was helping her cope. “The disease not only lingers in your body,” she says, “it lingers in your mind.”


RICHARD CARSON



Carson, who fell ill soon after his graduation from college in 1981, remains sick. In 1990, he established the CFIDS Buyers Club, which sells vitamins at low cost to patients and donates a portion of its profits to research efforts, but he does not participate in the club’s day-to-day operation.


CHER



In 1995, a spokeswoman for Cher insisted that the actress was no longer suffering from CFS. “She’s well.”



GERALD CRUM



Crum had been on Ampligen for four and a half years when, in September 1993, he was forced off the drug. Although he testified before the Food and Drug Administration to the good effects of Ampligen, his wife believes her husband had reached a “plateau” on the drug, even though it “saved his life” by halting a progressive dementia. Even without Ampligen, Crum continues to improve in stamina, although, he notes, the improvement “comes at a snail’s pace.” The former computer programmer lives on disability support from his former employer.

Postscript: Crum died in June 2008 from B-cell lymphoma



JAMES DUNLAP, JR.



Dunlap, now twenty-three, had just begun eighth grade when he contracted the disease at the state of the epidemic in Yerington, Nevada. He was bedridden throughout his adolescence and was tutored at home until his senior year in high school. With effort, he graduated with his high school class and joined the army. He has no memory of his childhood years prior to the onset of his illness. He also suffers frequent violent tremors, and “continue[s] to get awfully tired,” according to his mother. Nevertheless, in 1995, Dunlap was making plans to attend college.


SONNY DUKES



After eleven years, Dukes, once a hard-living motorcycle aficionado, says he has not recovered but has “learned how to accept [the disease] and reconstruct my life around it…I’ve been through all the stages. If you’re going to survive, you’ve got to sit down and face it, and say this is about as good as it’s ever going to get, and hope it doesn’t get any worse. At least I’m still here—I’m still alive. I used to hope for a cure,” he adds, “but we’re not high on government priorities because we don’t die. Quality of life doesn’t seem to matter much.” Dukes says he has married “a good lady” and is leading a reclusive life, taking care of his wife’s parents while she works at a drugstore. He cannot hold a job, nor can he ride his bike much. “You don’t want to make a mistake on a bike,” Dukes says. “There are days when I don’t even want to be on it.”


BLAKE EDWARDS



One of the few Hollywood celebrities to discuss his illness publicly, Edwards first experienced symptoms of CFS in 1983. Over the last decade, he had enjoyed a series of partial remissions. In mid-1995, he was directing a Broadway musical starring his wife, Julie Andrews.


THOMAS ENGLISH



English, a former surgeon, had been ill for ten years by September 1995. Having given up the practice of surgery during the first year of his ordeal, deeming it too dangerous to his patients, he continues to miss his work terribly. “There are days when I would kill to take out an appendix,” he says. “Functionally, I’m better than I was at the worst point of the illness, as long as I stay within certain limits.”


GIDGET FAUBION



Called the “little warrior” by her admirers in the middle 1980s, Faubion, now forty-five, ran the national patients’ organization in Portland, Oregon until 1989, when burnout set in. After her departure, the organization dissolved. “The early pioneers had to have tenacity,” she says. “It took that to get us on the map. But many of us had to drop out to survive.” In the last five years, Faubion says, she has experienced “physical and mental” improvement. Once able to walk only with the support of cane, she now uses a cane just “ten percent of the time.” She works as an independent advocate for the disabled in her Oregon county, focusing on what she describes as the “unique” disabilities suffered by AIDS and CFS patients. “I’ve concentrated on what we can do to get back into the mainstream.” On the matter of her own illness, she says, “There’s that twenty percent residual that will always be there, but I’m hopeful.”


CANDACE GLEED



An Ampligen recipient for two and a half years, Gleed chose to go off the drug in June 1993. “Ampligen helped, but it become toxic after a while,” she says. “In the last six months,” she adds, “I’ve been going downhill.” For five years, Gleed had helped educate doctors and nurses who called the Incline Village CFS hot line. When she moved from Reno to Las Vegas in 1995, however, the first board-certified internist she consulted for an infection told her, “CFS doesn’t exist.” Said the second, “I don’t think it’s a real disease.”


ALAN GOLDBERG



Charlotte resident Goldberg was celebrating his sixtieth birthday when he acquired CFS on a 1985 ski vacation in Incline Village, Nevada. The textile machinery manufacturing executive was forced to retire and remained wholly disabled for five years. With Marc Iverson, he founded the CFIDS Association of America. Now seventy, he says, “I still have problems, but they are not as severe as they once were. I’m able to function.”



CLIFF HARKER



Harker, the Alabama sergeant who inadvertently launched Elaine DeFreitas on her search for the elusive CFS retrovirus, remained ill in 1995. Officially retired from the military in 1992 as a psychiatric disability case, the forty-six-year-old refers to his decade of CFS as a “bumpy ride” and “like looking at the world through a fun house mirror.” He adds, “It’s a disease of lowered expectations and limitations. If you can find where that limitation point is, you’re okay. If you cross it, it comes up and just kicks your butt.” In January 1995, Harker experienced three seizures and a mild stroke. Nevertheless, he is working as a receiving clerk, and endeavor that he says does not tax him intellectually or physically. He describes DeFreitas as “a hell of a lady.”



WILLIAM HARVEY



Fifty-eight-year-old flight surgeon and pilot Harvey quit flying in 1987 after nearly crashing his small plane during a landing. He did not attempt to fly again until 1992, when he felt sufficiently recovered. “It was a nightmare,” he says of his years of severe illness. “I’m still healing.” The widespread view of CFS as a psychiatric problem is, he continues, “an optical illusion that just sits here, built into the medical model. When the world flips, and the paradigm changes, it will be because we have hard data. But, as doctors, we must try to see reality as it really is.” Since writing about his experience in Aviation, Space and Environmental magazine, Harvey has been approached by several pilots suffering from CFS, including one of the shuttle astronauts. “We talk about what they should consider doing with their careers, especially if they are flying single-seaters. Inevitably, they must stop. The number of pilots who have [CFS] is pretty damn high,” Harvey adds. “We’re looking at a major problem in aviation, but we just don’t know it yet.”



MAYHOUGH HORNE



Former Pan Am pilot Horne grounded himself after falling ill in 1985. In 1989 he attempted part-time work at a less intellectually demanding job—selling real estate insurance. Not long afterward, he was involved in a car accident that resulted in additional head injury, destroying his ability to perform gainful employment of any kind. He currently is living on disability payments from the Social Security Administration.



MARC IVERSON



Iverson, who became sick in 1979 while a BarclaysAmerica vice president and later founded the CFIDS Association of America, has ceded the day-to-day leadership of the organization to healthy professionals. The forty-two-year-old remains fully disabled.



MARTHA JAMES (PSEUDONYM)



National Cancer Institute researchers invited James and her daughter, both of whom were stricken during the Yerington, Nevada, epidemic, to come to the NIH in 1986. Nine years later the fifty-five-year-old James continues to suffer cognitive difficulties. “Whenever I try to think about a problem,” she says, “pretty soon my mind just goes blank. I feel like I’ve hit a brick wall.” Nor can she perform any work with her arms, which continue to be unnaturally weak. “Nobody in Yerington really talks about the epidemic anymore,” James adds. “But I think people are still being diagnosed with it. I don’t think CFS has gone away.”



SAM JOSEPHS (PSEUDONYM)



CFS ended Joseph’s dentistry career in June 1985. He was diagnosed by Anthony Komaroff a year later. He lives on disability payments from Social Security and the Veterans Administration. “I’m getting better,” the forty-two-year-old says. “I think it’s partly because I don’t do anything at all, but a lot of it has to do with believing that Jesus will heal you. I’ve been praying to Jesus to heal me for two years. It has to happen sometime.”


NANCY KAISER




A former golf enthusiast, Kaiser had been ill for nearly ten years and was thought to be in a terminal state when she became the first CFS victim to receive Ampligen in 1989. She experienced dramatic improvement, but she was pulled from the drug in September 1993, and after a two-week grace period she deteriorated rapidly. She is currently confined to a wheelchair or to bed.

Postscript: Several days after lapsing into a coma, Kaiser died in June 2008.



GERALD KENNEDY



Kennedy, a former drafting teacher, acquired CFS during the Truckee High outbreak of 1985 and was forced into permanent retirement in 1994 at age fifty-five. He receives a partial California state teachers’ retirement pension.



JANICE KENNEDY



Disabled by CFS sine February 1985, the former Truckee High English teacher received Ampligen in the 1990 trial. The drug resulted in some improvement, though not enough to allow Kennedy to return to teaching. Now fifty, she is once more housebound and lives on teachers' disability insurance.



JILL KOVAL



Koval, a member of the U.S. Olympic cycling team, was unable to resume her athletic career after coming down with CFS in mid-1986. Starting in 1988 she experienced gradual improvement. “It wasn’t until 1990 that I felt I could live and not worry about it,” she says. But she adds, “I’m afraid to ride competitively again because I’m too afraid of getting CFS.” Koval manages a personal fitness center in Orange County, California, and occasionally experiences mild symptoms of the disease. “CFS taught me that it’s okay not to win—that I don’t always have to be number one.”



CHRIS LARSON




TWA flight attendant Larson was able to return to work in August 1990 after a five-year medical leave. “I work for three days, rest for four days, then start all over again,” she says. Since returning to TWA, she has met other flight attendants who suffer from CFS. “Usually,” she says, “I don’t tell people I have it, because I’m so misunderstood.”


PAUL LAVENGER




Lavenger, an internal medicine specialist, was disabled by CFS in 1989, two years after his wife acquired the disease. He retired from the practice of medicine after a twenty-five year career. In 1991, he spoke out publicly about both the epidemic nature of the illness and the federal government’s negligence in a lengthy interview in the New York Native. In April 1995 the doctor died of colon cancer.



CYNTHIA MODICA-GAINES



Modica-Gaines, a former university ballet instructor and performer, was considering suicide before she joined the Nevada Ampligen trial. Having fallen ill at thirty-five, she already had been bedridden for five years. Her sister, who cared for Modica-Gaines during several years of her illness, also acquired the disease, as did a cousin who briefly nursed Modica-Gaines during a period when she was temporarily removed from Ampligen after developing liver problems. The disease, says Modica-Gaines, “is a living death—it’s as though you’ve been kidnapped from your life and locked in your bedroom.” When she met Dan Peterson, she recalls, “I could only stare at him like a child in a Keane painting and cry.” She received Ampligen for three years. Now, she says, “I’m Lazarus.”



GINO OLIVIERI




The former Rochester, New York police SWAT team member and Detroit Lions football star, who was featured on the cover of Newsweek in 1990, moved to Charlotte that year to participate in the Ampligen trial. He received a placebo, then joined the class action suit against HEM Pharmaceuticals. HEM provided the drug to Olivieri for one year, but the patient recalls that “Ampligen didn’t do a thing for me.” After the Newsweek story, Olivieri received calls from CFS-afflicted policemen in Vancouer, Los Angeles, Seattle, Dallas and Chicago. He remains housebound and survives on workers’ compensation from New York state for job-related injury.



RICHARD PEARSON (PSEUDONYM)




Pearson, the lawyer who was sent by Dan Peterson to the NIH in 1986 for evaluation by Stephen Straus, remains ill nine years later. He is practicing law “half-time,” he says. He has remarried and is living in southern California. “On a scale of one to ten, with ten being recovery,” Pearson says, “I’m probably a six.” He stopped seeing doctors for his condition some years ago. “Have they found the magic bullet?” he inquires.



HOWARD PENNEY




Yerington, Nevada phys ed teacher Penney’s near-perfect attendance record began to disintegrate in autumn 1986, one year after the Yerington epidemic began. Over the next four years, he saw seventeen doctors. One doctor diagnosed him with bone cancer, another with lupus, a third with depression; the rest offered no diagnosis at all. Interviewed in 1990, he said, “My life is ruined, my family is ruined, my house is up for sale.” In 1995, however, the forty-eight-year-old Penney reported that he is better. “I’m not back to where I want to be, but I’m also ten years older.”



RUDY PERPICH, JR.



By 1995, Rudy Perpich, Jr. had been ill for twelve years. When the disease struck, the son of the Minnesota governor was a twenty-four-year-old second-year law student at Stanford University. His father rallied to his aid, becoming involved in the political process of bringing pressure to bear on federal health agencies, even meeting personally with congressional leaders. The junior Perpich says he now feels “eighty percent better.” He works five hours a day as an investment and legal advisor to his father. He is regretful rather than angry that, during the early years of his illness, his doctors advised him to exercise and throw himself into his work. “I drove myself into a furrow,” he recalls. As for the politics of the epidemic, he comments, “We got pushed down the rung. I would have preferred to have more attention paid.”



JEAN, PAUL, HANNAH, ALISON, LIBBY AND MEGAN POLLARD




The Pollard daughters of Lyndonville, New York, have improved significantly in the six years since their mother, Jean, who was also ill, wrote to Barbara Bush seeking support for research. “They’re not cured,” Jean says. “They just have great coping skills, and that’s what they learned from David Bell. They all have symptoms, but nobody gets bedridden.” Their parents, Jean and Paul, are improved, too, though both suffer from short-term memory loss. “We continue to have several new cases of CFS around here,” Jean adds.




JOYCE REYNOLDS



A decade after the Nevada epidemic, former bank teller and Truckee resident Joyce Reynolds remains ill. “Sometimes you feel so bad you want to die,” Reynolds, now sixty-six, says. An Ampligen patient for three years under the Food and Drug Administration’s compassionate care clause, Reynolds found the drug only mildly helpful. Her two adult sons, believing her to have an imaginary illness, no longer visit.



SANDY SCHMIDT FULLER



Once an annual participant in the San Francisco marathon, former Incline Village resident Fuller, now fifty-two, was struck by the disease in 1984. “My symptoms began to disappear toward the end of 1988,” she says. “There hasn’t been anything to bring me back to the doctor since 1989.” She adds, “I’ve had a period of a few years when I wondered if it might come back. I still kind of watch myself.” Fuller, who received acyclovir from Dan Peterson, sued Blue Cross/​Blue Shield for insurance reimbursement in 1988. The case was settled out of court two years later; Fuller is unable to disclose the sum of money she received; but she reports that she is pleased with the case’s resolution. She has remarried and lives in California.



MEGHAN SHANNON



A former respiratory therapist at a San Diego hospital, Shannon had been severely ill for thirteen years by 1995. When she was reached at a retreat run by nuns in Santa Barabara, she was contemplating suicide. “I will probably not be going home,” she said, “not because I’m physically worse, but because I’ve not been able to find a way to take care of myself without living off other people’s generosity and because, in the last few years, the hatred for people with this disease has become so great. I’m forty-five years old. My dreams and hopes are gone. I don’t know where else to go, except to the other side, where it’s safer.”



SUSAN SIMON



Simon, a psychotherapist who had been ill for more than a decade, was killed instantly when a truck collided with her motorized scooter on a New York City street in 1993. A patient in Stephen Straus’s acyclovir trial, Simon had talked of suing Straus for malpractice.



FLOYD SKLOOT



Novelist Skloot, ill since December 1988, was a placebo recipient in the 1990 Ampligen study. The former elite-class long-distance racer is bedridden for an average of three days a week, requires a cane to walk, and is able to write for just two hours a day, “on a good day.” He calls the four-city Ampligen trial “a horror” and says he is writing a fictionalized account of the experience.



BARRY SLEIGHT



After ceding his lobbyist work to the Sheridan Group, Sleight married a woman who also suffers from CFS and moved from the capitol to a small town in Florida. He has since been diagnosed with chronic progressive multiple sclerosis; his wife continues to carry a CFS diagnosis. Sleight’s illness began after a case of mono in 1974 when he was in college, but worsened significantly in the middle 198s, when he was diagnosed with CFS.



NANCY TAYLOR



Taylor, the wife of a Tulsa entrepreneur and philanthropist, fell ill in 1977 after a blood transfusion, although she was not diagnosed with CFS until 1986. Ampligen, which she received for sixteen weeks in 1989, exacerbated her disease. Her husband, Ed Taylor, who had partially funded the early Nevada trial, was convinced the drug worked in only a small proportion of CFS sufferers and that HEM had toyed with data to cultivate government support for its drug. In 1995, Nancy Taylor remained seriously ill, able to function for only three to four hours every other day. “She is worse, not better,” reports her husband, “but that’s true of a lot of the ten-year people. Of course, our studies are now telling us that after just five years, it’s damn near hopeless.”

Postscript: Nancy Taylor died in July 2007.



INGA THOMPSON



By 1995, Olympic cyclist Thompson had suffered from the disease for eleven years, although she reported that her last seriously disabling bout was in 1990. “I still have difficulty with my memory,” she says. Somehow, Thompson had managed to race in the 1988 and 1992 Olympics. Training was difficult. “I had to explain to the coaches that I couldn’t do the same mileage that everyone else could do,” she remembers. She retired from the sport after the 1992 games. Now thirty-one, Thompson says the disease prevents her from holding a full-time job. In addition, she must monitor herself carefully to avoid severe relapses. “When I first got sick, I had speech problems,” she says. “Now, when I start making up words that don’t exist, and have trouble with pronunciation, that’s a sign. Another sign is depression.”



PAUL THOMPSON (PSEUDONYM)



Computer prodigy Thompson, who fell ill during the Incline Village, Nevada, epidemic of 1984-1985, continues to experience minor symptoms of CFS, but no longer suffers the pronounced cognition problems that originally beset him. “The logic skills are mostly back,” Thompson says.



GORE VIDAL



Through a spokesman, Vidal reported in 1995 that his 1987 CFS diagnosis had been in error and that he was no longer ill.



TRACY WATSON (PSEUDONYM)




A member of Stephen Straus’s patient cohort, former kindergarten teacher Watson has been bedridden or wheelchair-bound since 1986. Beginning that year, she made numerous trips to the NIH, where she underwent four brain scans, two lumbar punctures, an arteriogram, laparoscopy, lymphofluoresis, and numerous other tests for rare diseases. On each visit, she was required to fill out an array of psychological questionnaires. Once a Straus defender, Watson conceded in 1995 that the researcher was erratic in his moods and frightened her.



ROMY ZARIT



Zarit, ill since March 1986, was never able to resume her career as a flight attendant for PSA; her husband, a minister, acquired the disease one year after Zarit did; the couple recently moved from Los Angeles to Whitefish, Montana, with their two daughters, who remained unafflicted.