Monday, February 03, 2020

First ME/CFS Pediatric Population Study Published

Big news! A long overdue first-ever population study of kids and ME/CFS was just published in the journal Child and Youth Care Forum. It's full title is The Prevalence of Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in a Community-Based Sample and you can read the abstract here (or pay for the full text). There is also an excellent, brief summary of the study's findings in Science Daily.

A population study scientifically estimates what percentage of the population has a certain disease, in this case ME/CFS in kids. This is big news because when the CDC conducted two previous population studies on ME/CFS (the second one estimating about 2 million adults in the U.S. have the disease), they left out kids entirely; both of their studies focused only on those 18 and older. Those of us with kids with ME/CFS have long seen the desperate need for a population study of kids, to help educate the medical profession (and the public) that this devastating disease does affect children and teens.

 A few highlights from the findings of the study:
  • Researchers, led by longtime ME/CFS researcher and advocate Leonard Jason, screened 10,000 children and teens (ages 5-17)  in the Chicago area (population studies like this start with phone surveys that lead to more intensive medical work-ups for those who meet certain criteria).
  • 0.75% of the children in the study had ME/CFS-- that's more than a half million children in the U.S.
  • Startlingly (though not surprising to patients!), 95% of the children identified as having ME/CFS had not been diagnosed. Only 5% had been accurately diagnosed.
  • African-American and  Latinx kids were slightly more likely to have ME/CFS and even less likely than Caucasian children to have been diagnosed.
You can read a full summary of the study's results in Science Daily. Be sure to share this article with your own doctors, school nurses, teachers and administrators!

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