For years, doctors told patients with chronic fatigue syndrome symptoms to increase exercise gradually. But that advice may have been wrong. Learn more here.
No one knows the causes of chronic fatigue syndrome. The most notable symptom is crashing after a mental or physical stress. You might feel wiped out for hours, days, or weeks, no matter how much you rest — an uncommon symptom in other illnesses.
For years patients were told to exercise their way out of the problem, building up slowly (“graded exercise”), perhaps with the help of a cognitive behavioral therapist. The theory, dating back to the 1980s, was that they fell out of shape and become irrationally afraid of exercise, in a bad feedback loop. We all know it can be hard, and discouraging, when you try to get moving again.
But chronic fatigue syndrome symptoms are much worse than feeling out of shape. After a game-changing 2015 report from the Institute of Medicine, the Centers for Disease Control and Prevention dropped the graded exercise recommendation this summer, under pressure from the chronic fatigue syndrome community. In large surveys, patients reported that even careful exercise programs made them worse.
New research backed up the idea that these patients needed better help. Studies from Stanford, Columbia, Cornell, and elsewhere showed that the chronic fatigue syndrome symptoms indicate a number of bodily dysfunctions.
Scientists also argued that the largest study of the illness, and its conclusion that exercise-plus-therapy helped patients, was full of “unacceptable” flaws. The National Institute of Health launched a big study this spring, looking for a better understanding of the illness and possible treatments.
What is chronic fatigue syndrome?
There are no tests for it. It often begins after a virus, but it is not a chronic infection with the Epstein-Barr or mononucleosis viruses. Scientists call it “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).” Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) were names given to two well-documented cluster outbreaks of a clinically similar illness in London in 1955 and in Nevada in 1984.
The condition seems to run in some families, and may involve vulnerability in the immune and circulatory systems as well as the adrenal glands.
The syndrome often shows up in the teens, but it can affect small children and is much more common in girls. It also can arrive in your thirties.
Approximately 60 percent of teens with ME/CFS have joint hypermobility, compared to approximately 20 percent of healthy adolescents.
How is CFS diagnosed?
The following chronic fatigue syndrome symptoms need to come and go over at least six months and not be explained by another problem.
Sleeping is a problem, either insomnia or waking up not feeling rested. Patients are slow to get moving when they wake up, and function better later in the day. You may feel completely drained after activities that were once no problem. The hallmark symptom is taking a long time to recover from the “crash.”
Chronic fatigue syndrome symptoms need to come and go over at least six months and not be explained by another problem; you also need to have four or more symptoms of the condition.
Doctors also look for at least one of the following: problems with concentration, short-term memory or finding words, and feeling dizzy or faint while standing. The reaction should improve when you lie down.
Other symptoms of chronic fatigue syndrome include headaches, muscle and joint pain, a sore throat, and tender glands in your neck or armpits.
Treatments for chronic fatigue syndrome
So far, there’s no clear way to predict how long it will take to get over the problem — but people do. In a follow-up study of nearly 700 young people who considered themselves recovered, the illness lasted anywhere from one to 15 years. By 5 years, 60 percent reported recovery, and by 12 years, 88 percent did. But they may have had to cut back on their activity and have persistent milder symptoms.
Medication can address the symptoms but not the still-unknown underlying cause.
March 27, 2020
Christopher Nystuen, MD, MBA