Imagine feeling exhausted after walking two blocks, having chronic sore throats and muscle and joint pain. Imagine your head feels stuffed with wet sand and when you try to read, words swim on the page. Imagine feeling heavy and sluggish rather than rested after a night's sleep.
And imagine that these ailments last for years.
These are some of the symptoms of chronic fatigue syndrome, also known as chronic fatigue and immune dysfunction syndrome (CFIDS,) or myalgic encephalomyelitis, a serious and disabling illness that is now one of the most common chronic illnesses of our time. It is also one of the most misunderstood.
Now, new private and government research, along with a 1999 prevalence study by Dr. Leonard Jason of DePaul University, is shattering many misconceptions, showing chronic fatigue syndrome to be a major public health problem. The new research underscores how important it is that medical personnel, policymakers and the public become educated about this illness.
Researchers have long suspected and searched for a virus as the cause. It is now suspected that chronic fatigue syndrome, like cancer, represents a cluster of clinically distinct diseases whose origins may lie in a combination of factors: one or more viruses, environmental toxins, stress and genetic predisposition.
The CDC estimates in the early 1990s, based on people receiving medical treatment, projected the number of people with chronic fatigue syndrome to be 10 per 100,000. The 1999 prevalence study, which evaluated a large random sample of people in metropolitan Chicago, reveals rates of 422 people per 100,000. When a whole community was studied, not just people under a doctor's care, the numbers increased significantly. The new numbers reveal 800,000 adults in the United States have chronic fatigue syndrome, twice the number of people with multiple sclerosis.
Contrary to the "yuppie flu" myth, the 1999 study showed the illness to be wide- spread in low-income and minority communities, with Latinos and Mexican Americans exhibiting higher rates than Caucasians.
Even more shocking, the study revealed that only 10 percent of those with chronic fatigue syndrome had been previously diagnosed. Thus, 90 percent of people with the illness are struggling to maintain normal lives without the benefit of medical diagnosis or treatment. The study reveals a hidden epidemic that hits women disproportionately, devastates lives and costs billions of dollars annually.
Other myths new research is debunking:
Myth: People with chronic fatigue syndrome are "merely tired," perhaps from overwork or stress. Fact: People with the illness have a complex, multi-system illness, showing abnormalities in the immune, neurological, endocrine and other systems. The profound exhaustion of a person with chronic fatigue syndrome bears no relation to the fatigue a healthy person feels as the result of a busy life. People severely ill with chronic fatigue syndrome have a functional level that is significantly lower than that of someone with cancer undergoing chemotherapy, someone with heart disease or multiple sclerosis.
Myth: People who claim to have chronic fatigue syndrome are really de- pressed. It's "all in the head." Fact: In the 1999 study, 60 percent of those diagnosed with chronic fatigue syndrome had never experienced a psychiatric illness, such as depression, before the onset of the illness. People with depression generally feel better after exercise; people with chronic fatigue syndrome feel worse after exercise. People with depression typically have enlarged adrenal glands; people with chronic fatigue syndrome often have small, low- functioning adrenals.
New research also reinforces the understanding that the illness can involve significant transient (as opposed to permanent) brain damage. Brain scans have revealed lesions in people with the illness, as well as a decreased blood flow to the cerebrum and midbrain.
People with chronic fatigue syndrome have symptoms similar to a concussion: brain fog, confusion, memory loss and difficulty processing sensory input. A simple trip to the grocery store can be exhausting as the brain struggles to process all the light, noise and movement. In 2002, the U.S. diagnostic code for chronic fatigue syndrome will be moved from "general symptoms-malaise and fatigue" to "other disorders of the brain."
A diagnosis is made when a person meets the Centers for Disease Control definition: clinically evaluated, unexplained, persistent fatigue that is of new onset, is not alleviated by rest, lasts over six months and results in substantial reduction in previous levels of activity. In addition, four or more of the following symptoms must be present for over six months: impaired memory or concentration, sore throat, tender cervical or axial lymph nodes, muscle pain, multi-joint pain, new headaches, unrefreshing sleep and post-exertion malaise lasting more than 24 hours.
Chronic fatigue syndrome disrupts work and family life for hundreds of thousands of people. This has important implications for public health and policy. Our new understandings about the illness should galvanize support from legislators, the research community and the general public for increased research and education about this major public health concern.
By Dorothy Wall, author of Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome. Originally published in The San Francisco Chronicle, May 12, 2000. Reprinted with permission.