Stunning Findings of New Pediatric ME/CFS Prevalence Study

7-Year Pediatric ME/CFS Prevalence Study Publishes Stunning Findings

Dr. Leonard Jason

Last week, the journal Child & Youth Care Forum published the results of a seven-year ME/CFS prevalence study that screened more than 10,000 children and teenagers in the Chicago area. The study, co-led by Dr. Leonard Jason and Dr. Ben Z. Katz, was a partnership between DePaul University and Ann & Robert H. Lurie Children’s Hospital of Chicago and funded by the NIH.


Key Findings:

  • Less than 5% of youth in the study who tested positive for ME/CFS had been previously diagnosed with the illness
  • African American and Latinx youth were twice as likely to be living with undiagnosed ME/CFS
  • Prevalence of pediatric ME/CFS was 0.75%, with a higher prevalence among African American and Latinx youth compared to their Caucasian peers

Read more about the study in Science Daily.


Share Your Anonymous Comments for New Social Security Administration Disability Rule

The Social Security Administration (SSA) has extended the deadline for public comments regarding new controversial regulatory changes. Under the proposed change, the government would look more closely at whether certain disability insurance recipients still qualify as “disabled” after they’ve already been awarded those benefits. While recipients already have to demonstrate their continuing disability every few years, the proposal would ramp up the examinations, potentially creating unnavigable obstacles for even qualified beneficiaries of the program.

Several people with ME/CFS have expressed an interest in sharing their feedback about how these new regulations will impact them, but fear repercussions because comments are public record in government and internet databases.

If you would like to share your comments anonymously, please email them to before 3 pm ET on January 31 and Solve M.E. will anonymously include your feedback as part of our organizational comments.

To read the proposed regulations in full, visit:

**The deadline has been extended, even if not reflected in the link above.**

Update on ME/CFS classification by the World Health Organization (WHO)

WHO Now Includes ME/CFS in Postviral Fatigue Syndrome in the Neurological Chapter of ICD-11


As reported by Action for M.E. (UK)

After years of hard work by ME/CFS advocate Suzy Chapman, the World Health Organization (WHO) has doubled back on plans which would have made it even harder for people with ME/CFS to get the medical care and support they need.
The WHO lists all known diseases in its International Classification of Diseases (ICD) using a system of diagnostic codes. Recent proposed changes to the ICD would have resulted in a new diagnosis of Bodily Distress Disorder replacing that of Medically Unexplained Symptoms, with additional criteria that would capture people with ME/CFS and direct them through psychiatric care.

Thanks to Suzy’s determined and tenacious challenges to this, setting out clear evidence, the WHO has now agreed to include ME/CFS in the “exclusions” criteria for the Bodily Distress Disorder classification. This means that health professionals must rule out ME/CFS before they can diagnose Bodily Distress Disorder. You can read more about the huge amount of work that has gone into this on Suzy’s Dx Revision Watch blog.

Without this work, people with ME/CFS would have experienced even more misdiagnosis and misunderstanding, and we join the ME/CFS community in sharing our huge gratitude with Suzy.