Although CFS affects children and adolescents in many of the same ways it affects adults, there are some significant differences. From a clinical standpoint, one major difference is in onset.

In adults, gradual onset occurs in up to 75% of cases. In children with CFS, most of whom are adolescents, it's reversed, with around 75% experiencing acute onset. (Gradual onset, however, is more common in young children.)

There is variability of the illness in symptoms, which tend to migrate. For example, a child may experience sore throat and headache, followed the next day by lymph node pain. There is also considerable variability in symptom severity.

In adults, there are often a few symptoms that are worse than others. In children, certain symptoms may be worse one day, only to be replaced by other severe symptoms a few days or weeks later. This dynamic can be further complicated by the fact that children may have more difficulty recognizing and verbalizing their symptoms.

Dr. David Bell, a leader in the field of Pediatric CFS/ME believes, The most striking thing about pediatric CFS is the ability of children to adapt to their symptoms. Yet that fact makes it more difficult to detect and treat the problem."

A teen may come home and sleep for three hours after school every day, but may not complain of tiredness because it has become the norm. Similarly, "young children who grow up with CFS have become accustomed to the symptoms and are able to function despite persistent and sometimes severe discomfort."

The psychosocial aspects of the illness are another important difference for pediatric patients. Says Peter Rowe, MD, a researcher at Johns Hopkins University, "One of the biggest challenges to pediatric patients results from the fact that the illness affects them before they've truly had an opportunity to identify what their aptitudes and strengths are in life, and to have established strong emotional relationships with a significant other. The accountant who develops CFS as an adult knows she was a capable, functioning contributor to society, and that the illness doesn't define her as a person."

CFS/ME is often misdiagnosed in children because the symptoms are not consistent. The child will experience varying symptoms at different times of the week or month. When the parents take their children to the doctor each time, the complete set of symptoms experienced over time are often not pieced together.

Another reason why CFS/ME is going undiagnosed in children is because the criterion developed by the CDC is for CFS/ME in adults. For children with CFS/ME, two types of onset patterns have been noted. In children ages 5 - 12, a gradual onset of symptoms is usually seen. In children 13 and older, it is more common to see an acute onset of symptoms.

The parents of these children often misunderstand their sick child as well. For young children with CFS, they may not even comprehend that they are sick because they have no knowledge of what normal and healthy feels like.

If you suspect your child has Chronic Fatigue Syndrome, he or she should be seen by a CFS/ME specialist. General practitioners are typically not knowledgeable in dealing with Chronic Fatigue Syndrome and if they are, they have probably dealt more with adults than children. Visit our doctor database for help in finding a doctor who specializes in CFS/ME treatment.

It's important to listen to your child and take their symptoms seriously. If your child complains a lot about being fatigued, do not just assume that they are lazy or unmotivated. If your child complains a lot about body pain, do not just attribute it to growing pains. Regardless of age, we all need validation when we are truly ill.

In spite of the paucity of research, studies have shed light on various aspects of pediatric CFS. The main studies show the following findings:

• CFS occurs in children and adolescents, though less frequently in children younger than age 10. The age at onset of Bell's pediatric CFS patients ranges from 11-18; for Rowe the age range is 10-21, with the average age at onset of 15. Both have seen younger CFS patients, but not frequently. This suggests age of onset may be connected to hormonal changes as children approach puberty, but this isn't confirmed.


• Pediatric CFS has quite a variable duration, from months to many years. Although many children get better, the illness can be more chronic than we first thought. For instance, a 13-year follow-up study of 35 pediatric cases by Bell indicated that as many as 20% don't recover, and of the 80% who reported a good functional outcome, only 37% considered themselves fully recovered.


• Comorbid psychiatric disorders such as anxiety and depression are not uncommon, but they are generally mild when present and often secondary to the effect of being ill. Many kids with CFS have no anxiety or depression, in contrast to prior views of CFS as a form of generalized anxiety disorder or atypical depression.


• There is a strong association between adolescent CFS and related circulatory disorders that are characterized by intolerance of prolonged upright posture. Rowe reports that in 90% of untreated pediatric patients, this worsening of CFS symptoms with standing is associated with abnormalities in the regulation of heart rate and blood pressure. The most common of these problems is neurally mediated hypotension (NMH), but postural tachycardia syndrome (POTS) is also common. These disorders are treatable, which has opened up new avenues for the rehabilitation of patients with CFS.


• A physical examination of children with CFS may not be normal, as was once claimed. In addition to the orthostatic intolerance just mentioned, adolescents with CFS are more likely to have joint hypermobility, a physical trait that is present before they become ill. Children with CFS are also more likely to exhibit movement restrictions such as restricted prone knee bend, ankle dorsiflexion and straight leg raise during the physical exam.


• Preliminary evidence suggests that certain treatments such as cognitive behavioral therapy and graded exercise may help pediatric patients manage CFS.

The variability of the illness in children makes it difficult to diagnose and identify treatments that would be beneficial. In the short run, this points to the critical need for individualized care for children with CFS. In the long run, it emphasizes the need for a much larger research initiative.

Rowe and Bell agree on the vital need to focus more research on pediatric CFS, not only because of the debilitating nature of the disease itself, but because of the critical period of life it disrupts.

As Rowe puts it, Chronic illness and its limitations on activities constrain a young person's ability to determine identity, discover skills and form strong emotional relationships with others. There is an inability to engage in the normal activities of adolescence that help with the healthy transition to adult life."