Women are twice as likely as men to have chronic fatigue syndrome. And doctors are only now beginning to unravel all its mysteries.
Several years ago, it seemed just about everyone was suffering from chronic fatigue syndrome—or at least thought they were. With an array of symptoms that baffled even the Centers for Disease Control and Prevention (CDC), no definitive tests to diagnose the illness, and camps of doctors either dismissing it as “all in the head” or declaring it “the new AIDS,” it’s easy to see why confusion reigned.
Today a lot of the confusion has been cleared up. Doctors can say who has—and doesn’t have—the illness. And they are finding new ways to help patients. Immunologist Susan Levine, M.D., of Beth Israel Hospital in New York City, sorts out the myths from the facts.
How common is chronic fatigue?
Estimates range from ten thousand cases to as many as five million. My feeling is that the real number is somewhere between 1% of the population, or 2.4 million people. Most of them are in their twenties and thirties. And there are twice as many women as men.
Why are young women more prone?
It isn’t clear yet. It may be simply that women are more likely to go to doctors, so they’re diagnosed more frequently. But it could be hormonal, though doctors can’t explain why.
Why is CFS so hard to diagnose?
Because at first glance CFS looks like something—or everything—else. CFS has similar symptoms to Lyme disease, lupus, and early or mile multiple sclerosis. It also resembles a variety of psychiatric illnesses—depression, panic disorder, anxiety, and somatization disorder (known more familiarly as hypochondria). There’s no test that can say, yes, you have CFS, or no, you don’t. So the diagnosis becomes a process of ruling out all these other diseases.
Do many doctors still think CFS is psychological rather than physical?
I’d say about 70 percent of doctors now agree that CFS “exists.” The others—those who view it as simple depression—probably don’t have much experience with it and don’t understand the complexity of the symptoms. But even among those who believe it’s a real physical illness, only 10 percent would treat it with anything more than bed rest.
What are the symptoms of CFS?
Persistent flu-like aches and fatigue—you’re really exhausted, to the point that you can’t get out of bed for at least four to six months. That sounds like a long time, but anything less than that could just be a prolonged virus, and CFS is more than a prolonged virus.
The CDC is currently revising its official list of symptoms. It now includes: mild fever; sore throat; lymph node swelling and/or tenderness; muscle weakness; muscle aches; prolonged generalized fatigue; headaches; joint pain; neuropsychological complaints—depression, forgetfulness; inability to concentrate; and sleep disturbances. For a doctor to officially diagnose CFS, a patient must have eight symptoms for a period of at least six months.
I see patients who are truly ailing but, for some reason or other, are missing several symptoms, such as headaches or cognitive disturbances. They fall into an in-between category; they need treatment for CFS but technically don’t have it.
How does the illness usually start?
Patients might initially feel tired and achy, then feel worse over a period of three to six months, become increasingly exhausted from even minimal activity, and have more sore throats and muscle and joint aches. Sometimes they’re very restless all the time and can’t go to sleep. I’ve also heard of patients complaining about extreme vertigo.
Is CFS contagious?
No one knows—we’re not sure how it’s transmitted. I think it probably is contagious and that certain people, perhaps because of a faulty immune system, are more susceptible than others. Nevertheless, my patients have spouses, families, boyfriends, and friends who are perfectly fine.
Is it caused by a virus?
At first it was believed the Epstein-Barr virus (which causes mononucleosis) was responsible because the two diseases resemble each other so closely. Other viruses have also been proposed as possible sources, but none of these has held up to further research. In my opinion, no single agent is responsible for CFS. I think it’s the result of a combination of different viruses.
What about the scare that CFS may be a new form of AIDS?
There’s no connection at all. One study seemed to suggest that CFS patients had an AIDS-like virus, but that’s been utterly ruled out. Everything about CFS is quite distinct from major immune-deficiency disorders like AIDS.
Does the illness ever run its course?
Some of my patients get better after about a year. But occasionally even those who have been completely well suffer a relapse. Up to 70 percent of my patients may have lingering symptoms for as long as seven years.
How soon do you think there will be a cure for CFS?
Not until scientists identify the actual cause, which doesn’t seem imminent. But there’s a lot of exciting research going on now. Much of this, I believe, will lead to a better understanding of the disease and more effective treatments.
Reprinted with permission from Redbook, August 1993.