A new survey of Dutch doctors and their patients suggests that chronic fatigue syndrome affects only about 1 in 900 teenagers – but takes a heavy toll.
Among those diagnosed, more than 90 percent had at least missed “considerable” school in the last 6 months, with some saying they had not attended school at all during that time.
Missing school for substantial periods may have profound effects on a teenager’s educational, social and emotional development, but also has a potentially serious impact on family life, as one parent usually has to stay at home to care for them, and may have to give up their job altogether.
The study’s author, Dr. Sanne Nijhof of the University Medical Center Utrecht in the Netherlands explained that trying to understand why his estimate for teens is lower than previous ones for adults “would be speculative,” since his study did not include adults, and different studies use different methods.
To get a better idea of how many teens in the Netherlands are affected by CFS, Nijhof sent questionnaires to a group of general practitioners and reviewed a national registry of pediatric disorders, in which pediatricians report new cases of disorders affecting their patients. The researchers also mailed surveys to patients asking about the condition’s impact on their lives.
Based on their responses, the authors estimated that 111 out of every 100,000 teens, or 0.11 percent, were diagnosed with CFS. Records from pediatricians suggested that 12 out of every 100,000 teens, or 0.012 percent, were newly diagnosed with CFS every year.
Patients were an average of 15 years old when the illness began. Half experienced symptoms for at least 17 months before they were diagnosed. In one-fifth of patients, the illness began after a severe infection. CFS occurred in five times as many girls as boys.
Of potential concern, the authors note, is that the condition appears to be “under-recognised” 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 percent of the pediatricians consulted during the study. And nearly 75 percent of teens with CFS were not diagnosed by their general practitioners. This lack of awareness probably stems from the condition’s infrequency, said Nijhof. “The average GP will not have a CFS patient in their practice.”