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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.

Exclusionary conditions

In order to diagnosis ME/CFS, the medical provider needs to rule out other illnesses that might cause similar symptoms, such as untreated hypothyroidism, sleep apnea, narcolepsy, malignancies, leukemia, unresolved hepatitis, multiple sclerosis, juvenile rheumatoid arthritis, lupus erythematosus, HIV/AIDS, severe obesity, Lyme disease,  or celiac disease. Most of these can be ruled out with medical testing. Some active psychiatric conditions, such as schizophrenia or major depressive disorder, might explain fatigue but are unlikely to explain other physical symptoms, such as post-exertional malaise. The child may also suffer from a concomitant disorder, such as fibromyalgia (FM) or irritable bowel syndrome (IBS); these do not exclude a diagnosis of ME/CFS.

Differential diagnosis

Pediatric ME/CFS is frequently misdiagnosed as a behavioral or emotional issue, such as school phobia or depression. These disorders can occur at the same time as ME/CFS, or can be a consequence of dealing with a devastating chronic illness, and their presence does not rule out a diagnosis of ME/CFS. Careful observation of symptoms can differentiate ME/CFS from other disorders. For example, young people with depression don’t want to participate in activities, whereas young people with ME/CFS want desperately to continue normal activities, but are not physically able. Young people with depression may feel better after moderate exercise, whereas young people with ME/CFS may suffer post-exertional malaise and a relapse of other symptoms. Young people with school phobia may feel better when allowed to stay home or on weekends, whereas no such pattern exists in young people with ME/CFS.

Finding a doctor

It is crucial to find a doctor who understands ME/CFS. Many medical providers are unaware of the illness, or have been exposed to outdated information (e.g., ME/CFS is a psychological problem). If your doctor is open to learning, you can provide them with a copy of the recently published Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer and/or the IOM Report Guide for Clinicians. If you want something shorter, you can use the fact sheet in the Pediatric Primer (Appendix C) and/or the Center for Disease Control and Prevention (CDC) two page fact sheet for healthcare professionals.  

It is helpful to keep a careful record of your child’s symptoms, such as a daily journal or log. The Chronic Fatigue Syndrome Myalgic Encephalomyelitis: A Primer for Clinical Practitioners has a functional activity scale and sample activity log that might be useful. You can also download a copy of a pediatric ME/CFS assessment tool, the DePaul Pediatric Health Questionnaire, for your doctor.

Your doctor can help you interact with your child's school by writing a letter that describes ME/CFS and suggests school accommodations. Such a letter will be necessary for a Section 504 plan or Individual Education Plan (see Educational Rights). The Pediatric Primer provides a sample letter (Appendix E) . A second sample letter was developed by Dr. Faith Newton at Delaware State University.

The Massachusetts CFIDS/ME & FM Association maintains a database of information on providers in Massachusetts, and can help with physician referrals. Please Contact Us online or call the Information Line. If you would like to recommend a physician or other health care professional, please fill out the online Provider Recommendation Form.

Note: CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome) is an older name for ME/CFS.

More Resources

Voices from the Shadows has produced two short videos of Prof. Peter Rowe and Dr. Nigel Speight discussing pediatric ME/CFS diagnosis and management. Prof. Rowe and Dr. Speight are coauthors of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer.

Alphabet Soup” from The CFIDS Chronicle is an article that discusses the overlap of symptoms among a number of unexplained medical conditions, including ME/CFS, fibromyalgia, irritable bowel syndrome, and others (Buchwald, 2005).

"CFS in Children and Adolescents" is a two page fact sheet from the New Jersey Chronic Fatigue Syndrome Association, Inc. that provides a summary of symptoms, diagnosis and management (Rosemary Underhill, revised 2007).

CFS in Youth” is a one page fact sheet from The CFIDS Association of America (now called Solve ME/CFS Initiative) that provides a summary of relevant information.

"Childhood CFS” is an article from The CFIDS Chronicle summarizing the 2006 diagnostic criteria 2 (Jason and Porter, 2007).

Myalgic Encephalomyelitis—Adult & Paediatric:  International Consensus Primer for Medical Practitioners by the ME International Consensus Panel also provides extensive information about symptoms, diagnosis and treatment approaches, and includes diagnostic worksheets (Carruthers et al, 2012).

Note: CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome) is an older name for ME/CFS.


1. Rowe PC et al, "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer," Frontiers in Pediatrics 5 (2017):

2. Jason LA et al, “Pediatric Case Definition for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome,” Journal of Chronic Fatigue Syndrome 13, no. 2-3 (2006): 1-44.

3. Jason LA et al, “A Case Definition for Children with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome,” Journal of Clinical Medicine: Pediatrics 1 (2008): 53-57.