Myalgic encephalomyelitis/chronic fatigue syndrome: Mia's story

Ten years ago, Mia* was a happy, outgoing, and busy person. At 28, she was holding down a full-time job, working out at the gym three days a week, and busy with friends and family. Summers included canoe trips, cottage weekends, and vacations that were physically active, such as hiking in the Grand Canyon and camping in Iceland.

In June of the year she was 28, Mia developed mononucleosis. With that, everything changed. During the initial bout of the illness, Mia was extremely weak and unable to care for herself – even putting on shoes was a major physical effort. Gradually over a couple of months, her energy improved to about 50% or 60% of where it had been, and it has remained there ever since.

When Mia didn't recuperate as her doctor expected, she underwent a series of blood tests to try and identify the source of her constant fatigue. None of the tests yielded a positive diagnosis, which was a double-edged sword of both relief and frustration. It meant no cancer, no hypothyroidism, and no anemia – hooray! But what was wrong?

After six months, Mia's family doctor diagnosed her with chronic fatigue syndrome (CFS). As even less was known about the illness a decade ago, there was little her doctor could do. Mia was off work for years and struggled to make the psychological, physical, and social adjustments needed to cope with having a chronic illness. She recalls one specialist who told her that CFS was not a "real" diagnosis, and another who told her that her decreased stamina was a fact of life because "everyone gets older and has less energy." "True," Mia acknowledges, "but how many 28-year-olds need 19 hours of bed rest a day?"

Fortunately for Mia, she had family and friends who were supportive and they helped her find her way. Like anyone who faces chronic illness, Mia had to learn to let go of many ways of thinking and doing things. She found psychotherapy to be a source of strength, giving her the tools and the reinforcement to learn new coping skills.

While her energy levels have remained at about half of those of her healthy peers, on the inside Mia remains the same active person as she was before. The same interests endure, although she has to pursue them in a different way. For example, while Mia cannot meet the physical demands of a canoe trip, she can enjoy the outdoors with a trip to the cottage, so long as she has appropriate and well-planned supports in place. These supports include energy conservation strategies such as pacing, long periods of daytime rest with long hours of nighttime sleep, and help from family members with the driving and the cooking.

Today, Mia and others with CFS receive much more acceptance from the medical community than they did ten years ago. In 2001, Health Canada established a panel of international experts in the field of CFS to establish a clinical case definition of the illness as well as diagnostic and treatment protocols. Their guidelines were published in 2003. In 2004, OHIP (Ontario Health Insurance Plan) assigned CFS a diagnostic code, making it official by adding it to the books.

At present, researchers are studying many aspects of the illness, including the causes, pathophysiology (i.e., how the body's functions are changed by the disease), and treatments. While Mia knows that the best strategy for her right now is to keep on going, she also believes she and her family have good reason to hope that the coming decade will bring new and exciting insight into the nature of CFS.

*Mia's story is based on a true account. She has requested anonymity so her name has been changed.

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