Pediatric case definition/diagnostic criteria for ME/CFS

Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is diagnosed when symptoms have persisted for more than six months (three months for a provisional diagnosis) and cannot be explained by any other disease or psychological disorder. ME/CFS symptoms fall into five categories:

  1. Persistent fatigue, and especially post-exertional malaise or post-exertional fatigue in which even mild activity can cause a rapid loss of physical and mental stamina and an increase in other symptoms. Recovery is slow, taking days to weeks.
  2. Unrefreshing sleep, disturbed sleep, or day/night reversal.
  3. Pain in muscles, joints, head or stomach.
  4. Neurocognitive issues, such as impaired memory, difficulty focusing, “brain fog,” or new trouble with educational subjects.
  5. Autonomic, neuroendocrine or immune symptoms:
    1. Autonomic, e.g., dizziness, neurally mediated hypotension (NMH), postural orthostatic tachycardia (POTS).
    2. Neuroendocrine, e.g., feeling feverish, cold extremities, intolerance of extremes of heat and cold.
    3. Immune, e.g., recurrent flu-like symptoms, new sensitivities to food, odors or chemicals.

Children are more likely than adults to suffer from dizziness, abdominal pain, rashes, fevers and chills. These symptoms are described in more detail in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer 1, in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis:  A Primer for Clinical Practitioners, and in the pediatric case definition developed in 2006 by the International Association for CFS 2, 3. The Clinical Diagnostic Worksheet from the Pediatric Primer provides a useful guideline for medical providers. The Primer for Clinical Practitioners provides a slightly different Pediatric ME/CFS Case Definition Worksheet.

In February 2015, the Institute of Medicine (IOM) of the National Academies (now the National Academy of Medicine) proposed a new name, Systemic Exertional Intolerance Disease (SEID), and streamlined diagnostic criteria for ME/CFS. The IOM Report Guide for Clinicians has a clear description of the real, physical nature of the illness. These recommendations have not yet been adopted by federal agencies.