This article was originally published in Maclean’s magazine on April 15, 2002. Partner content is not updated.Ashley Roll's mother is reluctant to have her come to the phone. She's worried that answering questions will take too much out of the 19-year-old, but Ashley says she's feeling up to it. Because of chronic fatigue syndrome, Roll is almost a prisoner of her home in Burnaby, B.C.
Chronic Fatigue Syndrome
Ashley Roll's mother is reluctant to have her come to the phone. She's worried that answering questions will take too much out of the 19-year-old, but Ashley says she's feeling up to it. Because of chronic fatigue syndrome, Roll is almost a prisoner of her home in Burnaby, B.C. She endures numbing fatigue that confines her to a wheelchair on the rare occasions she gets out. Like some other CFS patients, Roll developed chemical sensitivities, in her case severe ones. Fragranced hairsprays, shampoos, conditioners, deodorants, laundry detergent, hand creams - all can trigger her asthma, migraines or nausea. Visitors have to abstain from washing their hair for at least two days before dropping by. CFS hit Roll hard eight years ago, when she was a bubbly, straight-A 11-year-old who played on the school basketball team, toured with a performing dance troupe and liked to swim and do gymnastics. "I loved my life before this happened," she says sadly. "Now, I can't do anything."
Chronic fatigue syndrome comes with a lot of baggage. Its list of suspected and elusive causes and triggers seems as long as the bulging catalogue of symptoms which afflict people. Frustration among patients, friends and family is often compounded by the significant proportion of physicians who take the attitude that much of what ails the patients is in their heads. CFS advocates are pleased that dismissive approach appears to be diminishing among doctors, but they still see it as a big part of their problem.
Despite attracting widespread attention in the late 1980s, the syndrome remains below most people's radar today. CFS patients still have trouble getting others to accept that they're not just tired. The name alone may discourage some people with no first-hand experience of the condition from taking it seriously. "Chronic fatigue syndrome is a horrible name because it's so demeaning," says Dr. Alison Bested, who treats hundreds of severely disabled patients in her Toronto office. "Everybody just says, 'Oh, I'm tired too'." The subjective nature of many of the symptoms and the absence of a definitive test only add to the confusion. Treatment is limited to trying to alleviate the various symptoms as they arise. Most people can hope to regain only some fraction of their former capabilities; full recovery is more rare. But so far, at least, there is nothing to suggest CFS is contagious.
Women, it appears, are two to four times as likely as men to suffer from CFS, but why that is remains unknown. The numbers available are evidence of an enormous medical problem. Studies suggest that at least 500,000 people suffer from CFS in North America - possibly many more. The condition does not appear to be fatal, nor is it always debilitating. But it has undoubtedly derailed the lives of hundreds of thousands of women and men in North America and Europe (its incidence in developing countries may be under-reported).
CFS can affect all age groups from any racial or socioeconomic background. It appears to carpet bomb the body's immune, nervous and endocrine systems. The all-out attack can produce a broad range of symptoms: aching muscles and joints, recurrent sore throat, swollen lymph glands, difficulty concentrating, poor memory, feverish feelings, headache, low blood pressure, irritable bowels, environmental sensitivities including hypersensitivity to sound and light, loss of appetite, muscle spasms, sleep disturbances, reactive depression to being chronically ill, and - last but certainly not least - mental and physical exhaustion so profound it can confine people to bed for months, even years. The majority of people with CFS also have fibromyalgia, a painful disorder characterized by muscle tenderness and stiffness throughout the body.
Even the diagnosis of CFS is far from straightforward. It is done by exclusion - eliminating what the patient doesn't have. In essence, it's what's left after physicians strike other debilitating conditions from the list of possible causes. Dr. Bruce Carruthers, a specialist in internal medicine now semi-retired on B.C.'s Galiano Island, has treated 1,500 CFS patients. "It's been called an orphaned disease," he says, echoing the frustration of many who feel CFS doesn't get the recognition and understanding it deserves.
Bested, however, was delighted to see almost 400 physicians and scientists at the American Association for Chronic Fatigue Syndrome's most recent international conference in Seattle. Various other conferences she attended before that in Europe drew just one or two dozen. And while a definitive explanation for how CFS wreaks its havoc remains elusive, a Belgian researcher thinks he's found an answer. The work is just beginning, says Bested. "It's like AIDS was 20 years ago. We're just scratching the surface."
Stephen Lewis, 64United Nations special envoy
To many, the name Stephen LEWIS is synonymous with an abundance of energy. Lewis is a former Canadian ambassador to the United Nations and a one-time leader of the Ontario NDP. Today, he jets to Africa monthly as UN special envoy for HIV/AIDS. But for a year starting in 1991, it was another story. "It was so bizarre, it's hard to phrase it," Lewis tells Maclean's. "I was simply clobbered. I was inert." At the height of the syndrome's crushing grip, his daily routine was simple: "There wasn't one," Lewis can now say with a chuckle. "The routine was largely to move from inertia to immobility." There was nothing funny about it at the time. "I couldn't stand it," he says. "To be so completely immobilized was the most depressing period of my adult life."
A number of CFS patients experience the syndrome's onset after some sort of physical trauma. A car accident can do it. Lewis believes his meltdown began in late 1990, when he was giving a luncheon speech in Montreal. The room was dimly lit during his audiovisual presentation when he slipped off the stage and broke his hip. Lewis was up on crutches soon afterward, giving more speeches, always pushing hard. That lasted about six months - then it all came to a crashing halt. Suddenly exhausted, he had to cancel all engagements for the next year. For some of that time he couldn't even get out of bed. He remembers his frustration at barely being able to drag himself to the bathroom. "When I look back on it," says Lewis, "I think, God, it's just unbelievable that I should have gone through a period where I felt so completely overwhelmed."
His prognosis was bleak. "The doctors told me, you'll never get back to better than 75 per cent of what you were," he recalls. But he did, thanks to what he refers to as "a determined act of will." Today, he considers himself fully recovered, and lucky to be so. Lewis is well aware there are physicians who feel CFS is, as he puts it, "a psychological or emotional problem masquerading as a physical problem." His response: "On balance, I'm inclined to think those doctors who think that are far too glib in their clinical assessments. I just read too much, talked to too many people, and experienced it myself. I have real feeling for people who struggle with this. I don't have a lot of sympathy for people who deride it."
CFS has probably been around a long time. Over the past three centuries, similar bundles of symptoms have been variously known as febricula, Da Costa's syndrome and neurasthenia. More recently, the names have included chronic Epstein-Barr viral disease and, in Britain, myalgic encephalomyelitis. A U.S. researcher gave it its current name in 1988, but the media preferred to call it "yuppie flu" because of a widespread misconception that it only struck the young, educated and affluent.
It is more than exhaustion. Doctors say that about 20 per cent of patients visiting their offices complain of being tired. To be diagnosed with CFS, however, a patient must show, in addition to inexplicable fatigue, a number of other specific symptoms for at least six months (three months for children). As for what might trigger the syndrome, one line of thinking points the finger at any of several viruses including Epstein-Barr, which causes mononucleosis, and herpes simplex 1 and 2. Also under investigation - but disputed - are possible links to Lyme disease and the polio vaccine. Some researchers think an infection triggers an exaggerated immune system response, leading to the cascade of symptoms. At this point, scientists are leaning toward the triple threat of a genetic predisposition, external triggers and an overactive immune system response.
Complicating matters is the fact that fatigue is often a symptom in psychiatric disorders. Doctors' guidelines for dealing with chronic fatigue syndrome generally call for careful patient screening for psychological problems. Moreover, the Quebec guidelines also say leaving work can be a bad idea - a notion that other CFS experts contest. Placing the emphasis on the mind rather than the body troubles Dr. Jock Murray, director of the Dalhousie Multiple Sclerosis Research Unit in Halifax and past president of the Canadian Neurological Society. "If people don't have hard evidence in front of them - an X-ray that's abnormal, a blood test that shows the problem - there is a tendency for people to think the problem is psychological," says Murray. "What they mean by that is that it is imaginary."
But that's not what the guidelines say, argues Manon Houle, a Montreal psychologist who sat on the task force that drew them up for Quebec physicians. Houle, who counsels patients with severe CFS, says that just how "real" symptoms may be can depend on what patients make of them. An ill-prepared student who wakes up with stomach pains the morning of a crucial final exam, for instance, is inclined to give in to the symptoms to put off writing the test. "You will not interpret that bellyache in the same way," says Houle, "if you are two hours from going out with the girl of your dreams, right?"
Former corporate lawyer
Bellyaching has nothing to do with chronic fatigue syndrome, says Jeff, a Toronto lawyer who has not been able to work in almost five years. Jeff, a private, quiet man who asked that his real name not be used, vividly recalls the last Saturday in April, 1996. He was at a dinner party when he felt a tingling around his head and turned bright red. He splashed cold water on his face to keep from passing out. The next morning Jeff had severe laryngitis and felt absolute exhaustion. He has never fully recovered. Today, he can gather himself together for a few hours, long enough to get out a bit, but he usually feels so weak he sits to shave and brush his teeth. He has trouble sleeping, walking and reading and experiences stomach problems. "You end up losing complete faith in your body," Jeff says. "You really can't trust it."
His cognitive decline seems to bother him most. After the initial onset, Jeff tried battling through the syndrome, returning to work for about six months before his employer suggested taking time off. "Things that would have taken me 15 minutes were suddenly taking two and three hours," he says. A mind that "used to work like a high-speed computer suddenly became a card file." For three days, his insurance company put him through a battery of psychological tests before concluding he wasn't depressed. He's come across doctors who suggest CFS might be all in his head. "Usually," says Jeff, "it's a neurologist who's seen me for five minutes." And it upsets him. "You know that as soon as they've raised that, they're no longer taking it seriously. They've come to the conclusion that because it's something that doesn't fit in their categories, it must be in your mind."
If you have CFS, should you rest? Or should you exercise to build up your energy? It depends on whom you ask. In Quebec, the emphasis is on staying employed and working out. "The literature is clear," says Houle. After the initial, flu-like onset, "rest is useless." Others hit the roof when they hear that. Bested counsels her patients in Toronto to rest and pace themselves to avoid bouncing back and forth between being too active when they feel good, and crashing and being confined to bed as a result.
Some patients turn to accredited naturopaths like Hamilton-based Alan Logan. Try avoiding wheat and dairy products for a couple of weeks, Logan tells them. That might alleviate some of the discomfort many have because of irritable bowels. Many CFS patients complain food additives such as monosodium glutamate (MSG) and the artificial sweetener aspartame aggravate their symptoms, so avoid them, says Logan. Probiotics - bacteria that favourably alter the microbial mix in the gut - may also help. Logan recommends lots of fruits and vegetables, particularly blueberries, which are high in antioxidants that protect cells and DNA from damage. But be careful, he says, not to believe everything you hear. "Chronic fatigue syndrome is like the weight-loss industry," Logan warns. "These patients are desperate to be well, and they will spend their last nickel on a magic-bullet supplement."
Doreen Van Gijn, 49
Former high-school teacher
It started as a vacation with the kids, aged 2, 6 and11. Doreen Van Gijn and her husband, both high-school teachers now living in Pickering, Ont., were driving through Florida in the family motorhome during their Christmas break in 1991. Van Gijn came down with what she thought was flu. She recovered, but after two more debilitating bouts over the next 10 months she was bedridden for two years. Since then, Van Gijn has been unable to work. Once an avid cyclist, she now relies on her three-wheeled, motorized scooter for anything more than a short walk outside. "My colleagues remember me running through the halls," says Van Gijn. "It was shocking for them to hear that it was difficult for me to climb stairs now."
Van Gijn feels that what she refers to as her myalgic encephalomyelitis has robbed her of a career, her ability to care for her children - just about every aspect of normal life. With one breadwinner sidelined, the family came close to losing their home. After four years of providing benefits under Van Gijn's long-term disability plan, the insurance company stopped paying. "On the basis of their doctor whom they paid, they terminated my benefits," says Van Gijn. "I had to hire a lawyer." It took two years to get the benefits reinstated. "This," Van Gijn says, "is not an uncommon story."
In Belgium, Dr. Kenny De Meirleir and his colleagues have published several papers in peer-reviewed journals, though some work remains unpublished. He is working in an area of CFS research where there seems to be a widespread interest: the immune system. De Meirleir postulates that CFS begins when a virus invades the body, prompting the immune system to launch a defence. Part of that response is to activate an enzyme called RNase L that chews up viral invaders. Once the virus is expunged, RNase L activity should decline. But in patients who develop CFS, he says, it remains high, turning its damaging attention to cell-membrane proteins, affecting pain receptors, the intestinal lining and the blood-brain barrier that keeps harmful chemicals away from our grey matter. "We now have a complete understanding of the biology of CFS," De Meirleir tells Maclean's.
Not so fast, cautions Murray in Halifax. Sure, RNase L sounds like a plausible explanation, he says, "but it is in fact just a theory." It's been 150 years since infection was first suggested as a possible trigger in multiple sclerosis, and it remains the one mechanism most researchers suspect, yet no one's been able to prove it. Proof of the origins of CFS may come swiftly with luck - or it could take much longer than most patients have. Until then, they are left with a battle few of them have the energy to wage.
The term chronic fatigue syndrome applies to:
-- an unexplained, persistent or relapsing fatigue that is not the result of ongoing exertion, is not substantially lessened by rest, and significantly reduces a person's previous levels of activity.
It is diagnosed only when those conditions exist alongside at least four of the following symptoms for at least six months (or three months for children):
-- substantial impairment in short-term memory or concentration;
-- sore throat;
-- tender lymph nodes in the neck or armpit;
-- muscle pain;
-- joint pain without swelling or tenderness;
-- headaches of a new type, pattern or severity;
-- unrefreshing sleep;
-- malaise that lasts more than 24 hours after exertion.
Unexplained chronic fatigue cannot be diagnosed if any of the following conditions apply to the patient:
-- sleep apnea and narcolepsy; side effects from medication; a previously diagnosed but possibly unresolved medical condition (such as malignancies or hepatitis B or C) that could account for fatigue; a major depressive disorder, schizophrenia, dementia or a serious eating disorder; alcohol or other substance abuse; subnormal activity of the thyroid gland (hypothyroidism).
Source: Centers for Disease Control and Prevention
See also DISEASE.
Maclean's April 15, 2002