From TIME magazine, Healthland section, 19 April 2011 (story by Amie Ninh).
It's not unusual for teens to stay home from school for a day or two if they're feeling under the weather. But in some uncommon cases, debilitating symptoms — such as joint pain and exhaustion — persist.
A new survey published in the journal Pediatrics suggests that about 1 out of 900 teenagers are diagnosed with chronic fatigue syndrome (CFS). And while the condition may be rare among teens, it takes a heavy toll: about 90% of teens diagnosed with CFS missed significant amounts of school in the previous six months, according to the survey, and some teens said they hadn't attended school at all during that time.
The impact is felt by many more people than the patient, said Dr. Katharine Rimes, who was not involved in the study.
“Missing substantial amounts of school can potentially have profound effects on their educational, social and emotional development,” explained Rimes, based at King's College London. “It also has [a] potentially serious impact on the family. If the child is off school, one parent — usually the mother — usually has to stay at home to care for them, and often give up their job altogether. This can obviously have adverse financial and psychological effects.”
Chronic fatigue syndrome is a long-term illness characterized by overwhelming physical and mental fatigue, joint and muscle pain and problems with concentration, memory and sleep. There is no cure for the disabling condition, and scientists are uncertain about its causes, according to the Centers for Disease Control and Prevention.
For the current study, Dr. Sanne Nijhof of the University Medical Center Utrecht in the Netherlands and a team of colleagues sent questionnaires to a group of doctors, reviewed a national registry of pediatric disorders and mailed surveys to patients affected by CFS. Based on the doctor surveys, the researchers estimated that 111 out of 100,000 teens, or 0.11%, were diagnosed with the condition. Registry records indicated that 12 out of every 100,000 teens — 0.012% — were newly diagnosed every year.
Those estimates are lower than estimates in adults. A Dutch study put the rate at 1% of adults. In the U.S., at least 1 million adults have CFS, perhaps more: 80% of people identified in studies of CFS had not yet been diagnosed, according to the CFIDS Association of America. It's hard to pinpoint a firm estimate because studies use different definitions and case criteria for CFS.
In the new survey, researchers found that teenage patients were 15 years old on average at the onset of chronic fatigue syndrome, and half had been suffering from symptoms for at least 17 months before getting diagnosed. CFS was five times more likely to affect girls than boys.
Problem is, the condition is so rare it often goes undiagnosed.
Of potential concern, the authors note, is that the condition appears to be “under-recognized” by primary care physicians. Only half of all general practitioners who agreed to participate in the study said they accepted CFS as a distinct diagnosis, versus 96% of the pediatricians consulted during the study. And nearly 75% of teens with CFS were not diagnosed by their general practitioners. This lack of awareness probably stems from the condition's infrequency, said Nijhof.
Bottom line: teens who have persistent symptoms of fatigue should be referred to a pediatrician.