You Feeling Well?

Chronic fatigue syndrome awareness began in 1984, after several hundred patients developed flu-like symptoms in Lake Tahoe, Nevada. Patients complained of extreme fatigue (the primary chronic fatigue symptom), as well as sore throats, mild fevers, headaches, memory loss and confusion. Doctors found most patients had several concurrent viruses, such as cytomegalovirus, Epstein-Barr and herpes virus 6. At the time, the Centers for Disease Control thought these symptoms were little more than frenzied hysteria.

The most well-known symptom is fatigue. However, this fatigue is nothing like what most people feel after a hardy workout at the gym or a particularly nerve-wracking day at work. The Centers for Disease Control describes it as “severe, incapacitating and all-encompassing.” People with CFS often cannot go to work, go to school, participate in social activities or take care of their personal needs because they always feel mentally foggy and physically rundown. In the most severe cases, patients never leave their beds or their homes. Most recently, it’s been discovered that the condition may be linked to a chronic fatigue retrovirus called XMRV.

“Life for us is different,” explains Janet Krause, 58, who has been suffering from chronic fatigue syndrome for at least 15 years. “We have to constantly balance what we can do, and people don’t understand that. That’s why a lot of relationships and friendships break up.” Krause experienced her first chronic fatigue symptom in her twenties, when she suffered from skin rashes, sinus problems, chemical sensitivity, migraines, breathing difficulty, sore throats, arthritic pain, eye focus problems and debilitating fatigue. By 2005, she could no longer work in the hospital food service, since she was dropping boxes at work, couldn’t hold a pencil and was ready for bed at 3 pm. Just a small trip to the store would leave her incapacitated for the rest of the day.

Lucy, a chronic fatigue symptom sufferer, has learned to cope with her tiredness syndrome. “Stop before you’re ready to stop. If you go till you’re too tired to do more then you’ll crash,” she warns. “When you think ‘I’ll just do that one or two more things, or visit one or two more shops, or go up one or two more aisles’ — don’t! Thinking this is your cue that you should stop works for me. Keep it simple. Decorate — but not as much; celebrate — but not as much; cook if you can — but not as much.”

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