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Chronic fatigue syndrome in teens not common but very serious & under-diagnosed by GPs – Dutch study

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An article published online Apr 18 by Pediatrics (“Adolescent Chronic Fatigue Syndrome: Prevalence, Incidence, and Morbidity,” by Dr. Sanne L Nijhof, et al.) reports on a survey of pediatricians and general practitioners to scope out the diagnosis and prevalence of adolescent CFS (ME/CFS) in the Netherlands.

While the resulting statistics have their limitations, the insights gained are valuable. For example:

• Given the findings that the impact of adolescent CFS tends to be extreme and long-lasting disability, and that CFS in youngsters is likely under-diagnosed & under-referred by general practitioners, the researchers’ proposal is that: “All adolescents who consult their GP for a complaint of severe and long-lasting fatigue should be referred to a pediatrician for proper disease diagnosis and initiation of treatment.”

• Chronic fatigue syndrome may affect 1 in 900 Dutch youngsters ages 10 to 18, vs. roughly 1 in 100 adults. By comparison, a recent study found that “severe fatigue” (limited duration) is much more common, affecting 20.5% of adolescent girls and 6.5% of boys in the Netherlands.

• In terms of onset, of cases diagnosed as CFS:

– Average age of onset is 15, with an average of 5 symptoms from the 1994 CDC diagnostic criteria, and half are ill for 17 months before getting a diagnosis (though the range was 6 to 110 months);

– 22% of diagnosed cases started after an acute episode of infectious disease, and 52% of those had recent or current Epstein Barr virus (mono) infection.

– 10% had acute noninfectious onset

– 68% had gradual onset.

• Fatigue and impairment measures are “remarkably high” in youngsters diagnosed with CFS, strongly suggesting that adolescent CFS should be recognized as “a serious illness” with serious potential educational & social consequences. Nearly half had been unable to attend school even 50% of the time during the previous 6 months.

• Most responding Dutch pediatricians regard CFS as a distinct diagnosis (96%) and use the 1994 CDC criteria for the diagnosis (92%).

• But by contrast, only 51% of responding GPs even consider CFS a distinct diagnosis & a much smaller proportion would apply the CDC criteria. This may suggest under-referral to pediatricians & thus failure of available statistics to reflect the true incidence of adolescent CFS in the Netherlands. (Though it is not known how frequently GPs may refer adolescents whom they deem “severely” or “chronically” fatigued to a specialist.)

• For treatment, patients were referred to a psychologist, physical therapist, rehab center and/or tertiary care center.

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