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Pediatric Chronic Fatigue Syndrome and Myalgic Encephalomyelitis

Chronic Fatigue Syndrome & Myalgic Encephalomyelitis Pediatric Information Contrary to the myth that ME/CFS rarely attacks children, it does, and in significant numbers. In early community-wide outbreaks of ME/CFS, children were among the most frequently affected. In the Lyndonville, New York, outbreak, Dr. David Bell noted that children younger than 18 years represented 30% of the total number of individuals affected.

In contrast to the adult population with ME/CFS, in which women predominate, the illness seems to affect boys as often as girls. Dr. Bell reported a nearly equal gender distribution in his practice. He also reported that 45% of his pediatric patients have a family member ill with ME/CFS.

While, in most regards, ME/CFS in children is indistinguishable from ME/CFS in adults, there are some important differences. According to Dr. Bell, the pattern of onset seems to be more age related in children. In children between the age of eight years and the onset of puberty, ME/CFS usually develops gradually. After puberty, ME/CFS generally begins with acute onset of symptoms, usually resembling the flu or mononucleosis. In children younger than eight years old, ME/CFS is difficult to diagnose because of the diffuse, transient nature of the symptoms and the difficulty most young children have in giving a detailed description of symptoms. This is not to say that younger children do not contract ME/CFS. Parents of children four, five, and six years of age have reported ME/CFS symptoms in their children. However, most clinicians will not venture to make a diagnosis for a very young child.

Children with ME/CFS tend to experience more gastrointestinal problems (manifested as stomach aches) and flu-like symptoms (sore throat and swollen glands). Children also tend to experience all symptoms with equal severity. Dr. Bell noted that, whereas adults generally report certain symptoms as consistently more severe than others, children can experience severe headaches and stomach aches one day, severe leg pains and insomnia on the next, and severe joint pains on the third.

The International Association of Chronic Fatigue Syndrome Working Group devised a specific pediatric case definition for ME/CFS that encompasses the unique characteristics of children with this illness. The primary differences between the adult case definition of ME/CFS and the pediatric definition are:
  • The pediatric definition only requires three months of ongoing symptoms
  • Physical symptoms, such as dizziness, pain and flu-like symptoms predominate
  • Sudden onset is not included (up to 25% of children have insidious onset)
  • Cognitive impairment is emphasized

In addition, children have all the adult manifestations of the illness: headaches, GI symptoms, sleep disturbance, light sensitivity, and pain. It should be stressed that in children with ME/CFS most of these symptoms will occur in clusters and will be difficult to distinguish from what doctors routinely refer to as "just a virus."

Most pediatricians cannot make the diagnosis of ME/CFS unless they have had experience with the illness. Given the range of symptoms it is more likely that a pediatrician unfamiliar with the illness will make a diagnosis of childhood migraine, atypical epilepsy, school phobia, attention deficit disorder, rheumatoid arthritis, asthma, or irritable bowel syndrome (among others). The continuing widespread misconception that children don't contract ME/CFS also makes securing a diagnosis difficult. If symptoms are severe and prolonged, the doctor will probably look for other causes. However, routine test results tend to be normal for most children with ME/CFS, although low sedimentation rate, slightly elevated white blood cell count, and low titers of antinuclear antibodies are common. As in the case of adults with ME/CFS, more complex immune system tests (natural killer cells, T and B cells) may reveal abnormalities.

The persisting attitude on the part of doctors and teachers that the child is "faking" symptoms for psychological reasons causes profound damage to children with ME/CFS. Misdiagnosing ME/CFS as school phobia, depression, or separation anxiety places the blame squarely on the shoulders of the child. When adults experience this kind of skepticism, they usually are able to defend themselves. Children are unable to do so; they depend on adults for information, explanations, sympathy, and advice. To throw disbelief in the face of a child who not only has all the physical symptoms of ME/CFS, but is terribly frightened and in profound need of reassurance is not only cruel, it is detrimental to the child's future emotional growth.

Parents of a child with ME/CFS should keep in mind that even though school officials and doctors may attribute their child's complaints to psychological causes, they seldom can back up their opinions. School phobia, for example, is a manifestation of separation anxiety. Children with separation anxiety display symptoms when anticipating separation, but which resolve when separation does not occur. In ME/CFS, symptoms are present not only during school hours, but after school and on weekends as well. Also, symptoms such as fever, lymph node pain, night sweats, and muscle and joint pain are not features of school phobia. Those who are apt to diagnose depression run into the same inconsistencies; lymph node pain and fever are not typical of depression. Children with ME/CFS can become depressed, but usually do so because no one believes they are ill. No study to date has revealed primary depression among children with ME/CFS.

Another difficulty parents may encounter is that some doctors insist that withholding the diagnosis of ME/CFS is better for the child. They argue that making the diagnosis will encourage self-identification as a "sick person." This is a groundless argument. A sick child is aware that he or she is ill. Denying reality will only produce more emotional and psychological distress.

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Parents must walk a fine line between allowing normal activities, which are essential for a child's growth and happiness, and excesses which provoke relapse. Learning to pace a child with ME/CFS is one of the most difficult tasks a parent can master, but it is well worth it in the long run. Eventually the child learns to pace him or herself. Let your child have fun, but keep an eye on his or her limits.

As you care for your child with ME/CFS, don't forget to take care of yourself as well. Nothing is more heartbreaking than watching a child suffer. Seek out support groups, friends, and family members for moral support and take advantage of the resources available for children with long-term or disabling illnesses. Remember that, for your child, you are the most important person in the world. Take good care of yourself.

The above is adapted from Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition by Erica Verillo.


Tymes Trust
Tymes Trust is the longest established national U.K. service for children and young people with ME and their families.

Center for Parent Information and Resources
This site provides information on national disability laws for children, including information on 504 plans, and IEPs. Also includes state resources.

Healclick is an online social networking site for young people with chronic illnesses.

Further Reading

"Migraines in Children"

Bell, David; Robinson, Mary; Pollard Jean; Robinson, Tom and Floyd, Bonnie. A Parent's Guide to CFIDS: How to be an Advocate for Your Child with Chronic Fatigue Immune Dysfunction Syndrome. Binghamton, New York: Haworth Medical Press, 1999.

Brotherston, Naida Edgar. Adolescence and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Journeys with the Dragon. Binghamton, New York: Haworth Medical Press, 2001

Jason, Leonard A, David S. Bell, Kathy Row, Elke L. S. Van Hoof, Karen Jordan, Charles Lapp, Alan Gurwitt, Teruhisa Miike, Susan Torres-Harding, Kenny De Meirleir. "A Pediatric Case Definition for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome." Journal of Chronic Fatigue Syndrome; Haworth Medical Press; Vol. 13, No. 2/3, 2006, pp. 1-44.

Rowe, Peter. "Orthostatic Intolerance and CFS: New Light on an Old Problem." The Journal of Pediatrics. Apri1 40(4) (2002):387-9.

Phenotypes of Chronic Fatigue Syndrome in Children and Young People - Source: Archives of Disease in Childhood, Apr 2009
Three distinctive phenotypes were identified in juvenile ME/CFS.
Evidence of Persistent Infection in Children with ME/CFS from Across the UK
"The medical profession must now take the consequences of ME in children seriously, and research into prevention and treatment must be given a high priority."
Diagnosing ME/CFS in Children: A Parent's Perspective
A mother of 2 children with ME/CFS recounts the difficulties, issues & benefits of achieving a proper diagnosis.
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