Much of the skepticism in the medical community about CFS centers on the question of whether it is a disease of the body or of the mind. The relationship between the symptoms of the illness and those of clinical depression is still being explored and remains a subject of sharp debate among doctors, as do the actual causes of depression.
Nevertheless, CFS patients are often treated with antidepressant drugs such as Sinequan, and at least one researcher has claimed encouraging results from a pilot study using that medication.
Many patients do show symptoms of depression; some studies have revealed a minority of syndrome patients with a higher than average incidence of depression earlier in their lives, or a family history of depression. But most researchers believe that for the majority of patients, depression is a result, not a cause, of the illness.
”Depression and CFS are separate illnesses and there is no direct cause and effect,” says Edwin Jacobson, the Los Angeles internist affiliated with UCLA, who is studying the effects of antidepressants on syndrome patients.
”But people susceptible to depression may be more susceptible to CFS.”
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There is no universally accepted treatment for CFS. Marla takes dozens of pills-vitamins, herbs, prescription medicines. On doctor`s orders she injects herself with vitamin B-12. She has practiced biofeedback and undergone acupuncture. So far, nothing has helped. Most people do recover, she`s been told, but the route back can take months or years, and many never regain full health.
The illness has mangled her life, robbing her of even the simplest pleasures. Sharing a meal. Watching a movie. Taking a walk. Even conversations are restricted to a few sentences a day. The rest of the time she listens, conveying her reactions with hand signals. She keeps a bell next to her bed to signal for food or water. Her mother has come from Chicago to help. The mornings on which she feels well enough to dress, Marla`s clothes are laid out for her because a trip to the closet demands too much energy.
She listens over and over to the lilting melodies and soothing voices of
”healing” and relaxation tapes. Also to relax, she performs breathing exercises. It seems a paradox, but it is not relaxing to lie helpless in bed day after day.
Since she cannot keep her eyes open for long, she can neither read nor watch television. She fills her days by listening to the TV, to books on tape or to the radio.
”How do I stay sane?” she writes. ”I spend my days trying to keep distracted so I can`t think too much about what has happened to my life. I listen to cooking programs on TV, fantasizing about when I will again be able to cook for my family. . . . Sometimes, to stave off boredom, I imagine menus for dinner parties.”
Most of the time, the telephone is deliberately off the hook. Marla cannot talk to friends on the phone because it expends too much energy. She carefully marshalls her ”eyeball time,” the few minutes each day when she manages to keep her eyes open.
”I save it to look at Elizabeth,” she writes.
Mostly, she waits to get better. ”CFS is a little like dying; I no longer participate in my life,” she writes. ”I only listen through the doors of my bedroom.”
Patients with the disease typically swing from remission to relapse. Marla monitors her condition meticulously and cherishes even the slightest improvement. She gets excited about the extra minute she can hold her head up. Or the few more seconds of conversation before the fatigue overpowers her. She is disappointed and frightened when the gains evaporate.
There are moments when rage and anguish overwhelm her.
One day, as she moved slowly across the floor to the bathroom, she stopped, turned and, tears in her eyes, said, ”I`m sorry I`m so sick.”
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By far the most dramatic theory of what causes chronic fatigue syndrome casts a single retrovirus as the culprit. The first human retrovirus was discovered a decade ago in Dr. Robert Gallo`s laboratory at the National Cancer Institute, an event little noticed outside the medical world until scientists linked AIDS to a retrovirus called HIV.
Retroviruses are so named because they operate in reverse of other common viruses. A common virus begins as a sprig of renegade genetic material that commandeers a healthy cell`s machinery and overrides the original
instructions, ordering it instead to produce more virus cells.
A retrovirus, however, infects the cell in a way that allows it to add its sinister program directly to the genetic blueprint of the cell; it is the only human virus to do that. And unlike common viruses, a retrovirus can hide in the affected cells from virus-fighting antibodies unleashed by the immune system.
”A retrovirus is much more intimately associated with the cell and therefore more difficult to kill than any other virus,” says Dr. John Coffin, a retrovirologist at Tufts University School of Medicine.
Most human retroviruses are especially destructive because they strike specific T cells, the white blood cells that orchestrate the human body`s overall immune response. The result can be either a ruined immune system, as in AIDS, or a rare type of leukemia, believed to be caused by another retrovirus known as HTLV-1.
Based on preliminary research by DeFreitas, Cheney and Bell, the retrovirus possibly linked to chronic fatigue syndrome could be either an entirely new variety or a cousin of two previously discovered retroviruses, HTLV-1 and HTLV-II. (HTLV stands for human t-lymphotropic virus, because it strikes T cells, the front-line soldiers of the body`s immune system.)
DeFreitas and her partners have cautioned that they have not yet isolated a complete retrovirus-that could take another year-and that even finding such a virus in syndrome patients would not prove it causes the disease.
Many researchers remain skeptical of the retrovirus findings. They note that one of the tests DeFreitas used is extremely sensitive. ”If somebody sneezes in the next lab,” the test results could be contaminated, says one critic. Cheney responds that the retrovirus finding was confirmed by three testing methods and was double-checked repeatedly over two years to avoid error.
It is likely that the immune system itself produces many of the symptoms of the illness. ”People have always asked the question,`What makes you sick, the virus you have or the immune system`s response to it?` And the answer largely is: Your immune system responding to it,” Cheney says.
Some CFS patients, for example, show high levels of certain cytokines, the chemical messengers that help cells communicate in the immune system. There are scores of different cytokines, but researchers have demonstrated that at least one, IL-2 (interleukin 2), when injected as a treatment into cancer patients, induces symptoms virtually identical to those of CFS.
Doctors today treat some symptoms of the disease by trying to blunt the effects of cytokines, but that can be tricky because the torrent of cytokines means the immune system is geared up for a reason. Until that reason is known, tinkering with cytokines too much could unleash even larger problems.
High cytokine levels reflect a switched-on immune system, but that does not necessarily mean a virus or germ has invaded. There is a set of illnesses known as ”auto-immune diseases,” such as lupus and rheumatoid arthritis, in which the body inexplicably turns on its own cells, and begins to attack them. One theory suggests that the body may be ”tricked” by certain viruses. It works that way because the immune system is programmed to attack certain shapes and structures. If a virus has a shape that happens by chance to closely resemble, say, a liver cell, then the body may not only attack the virus, but also mistakenly attack liver cells.
The diagnosis and treatment of CFS is further complicated because other diseases can mimic it-Lyme disease and multiple sclerosis, for instance-and because of the delicate nature of the immune system. Even though each human immune system is basically wired the same way, there are notable variances caused by genetics, environment and experience.
”You can line up five different people, give them the same virus, and get five different levels of illness,” says James Jones, an immunologist at the National Jewish Center for Immunology and Respiratory Medicine in Denver. – – –
Elizabeth is too young to understand what has happened to her mother. She has accepted that Marla must rest constantly. She has stopped calling for her when she awakes in the morning but still trots into Marla`s bedroom and climbs onto the bed with her dolls and stuffed animals.
”Mommy rest on bed,” was one of Elizabeth`s first complete sentences.
Even at her worst, Marla has tried to spend time with Elizabeth. In the early days of her recent relapse, she would struggle to the couch, where Elizabeth would climb onto her lap. ”While I rested my head I tried to put my arms around her as she watched `Sesame Street.` But my arms were too weak. They dropped limply to my side. I was too weak to even hug my baby.”
A few weeks ago, Marla tried to take Elizabeth for her first day at preschool, but her energy ran out. She ended up on a bench inside the school, tears streaming down her cheeks.
”My mother took Elizabeth`s hand and led her,” she recalls, ”while dozens of mothers came in with their children, talking and laughing as they greeted each other. It seemed so unfair.”
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The history of medicine is riddled with mysterious maladies that perplex doctors generation after generation. Some medical historians suspect chronic fatigue syndrome has persisted over the centuries under a variety of names.
The disease may not be new, but Cheney believes there is at least ”a new dynamic” propelling it, partly because of what seems to be a growing number of patients, but also because some patients exhibit a set of odd symptoms not recorded previously. Some patients lose patches of hair, for instance. Others register 30 or 40 points below their normal scores on IQ tests. Many suffer balance problems and some show signs of a decreased functioning in certain parts of the brain. Preliminary research shows blood flow, oxygen and sugar metabolism in those parts of the brain are dramatically reduced, which could help account for memory, concentration and IQ troubles.
Outbreaks of CFS-like illnesses have been recorded in London, Iceland, Australia and elsewhere around the world since 1934, when Los Angeles County General Hospital reported an epidemic among patients and staff.
In recent years, patients have battled for recognition of their disease as an illness of the body, not of the mind.
But recognition does not necessarily bring treatment, and while scientists study the disease, quack remedies abound. Some prescriptions seem to border on the absurd: One doctor advised patients to set their alarm clocks for 2 a.m. They had to be awakened, he said, so they could take a special sleeping potion.
A woman phoned Gunn to inform him that she had found the cure: ”I`ve had 18 root canals,” Gunn recalls her saying. ”Two more and I`ll be completely cured.”
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As for Marla, her relapse has stretched into five months.
”Trying to get well is like climbing up the side of a mountain by your fingernails,” she says.
Her doctors in Dallas confessed they could do nothing more, so last month Marla flew to see Cheney in North Carolina. His office features black leather reclining chairs in the waiting room.
Cheney examined her for four hours, diagnosing her case as CFS. Will she recover? she asked.
Cheney said the chances are good, but he can give no assurances.
”We have patients in wheelchairs and it`s year after year after year,”
he told her.
It was a difficult phrase to forget.
Back at home, Marla worries most about how Elizabeth is coping. There are times when Elizabeth scampers into the bedroom, clutching several books, and asks her mother to read to her. Marla tries, but after a few sentences her eyes close. ”I`m sorry,” she whispers. ”Mommy can`t.”
In recent days, Elizabeth has stopped bringing Marla books.
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For more information on chronic fatigue syndrome, write the Chronic Fatigue and Immune Dysfunction Syndrome Association, P.O. Box 220398, Charlotte, N.C. 28222-0398. Phone: 704-362-2343. In Chicago, the Midwest Chronic Fatigue Association can be reached at 312-335-1200.
