Many studies of Chronic Fatigue Syndrome in children involve patients seen by specialists, but large-population telephone surveys in the U.S. and UK paint a different picture of CFS frequency, signs, and prognosis in the juvenile population, according to a British specialist.
Esther Crawley, MD, is Consultant Pediatrician and Clinical Lead of the regional Pediatric CFS/ME Service of Royal United Hospital in Bath, England. Dr. Crawley made the following points in a research-based editorial – “Chronic Fatigue Syndrome in Young People: The Spectrum and the Myths” – published in the British Journal of Hospital Medicine.*
CFS Affects Up to 2% of Children
Large-population telephone surveys in both the U.S. and the U.K. conducted in 2000, 2003, and 2004 indicate that pediatric CFS is “surprisingly common,” affecting from 0.19% to 2.0% of children.
CFS Is Not Just ‘Yuppie Flu’
The telephone surveys indicate CFS affects youngsters in all socio-economic and ethnic groups about equally – whereas specialist studies tend to indicate it predominates in a higher socio-economic and higher achieving white population segment. The likely difference is that the more affluent are better able to seek and secure treatment, especially where medical attention may be limited or rationed.
Juvenile CFS Does Not Predominate in Females
The large-population surveys conclude pediatric CFS shows no gender preference and occurs about equally in the two sexes – whereas studies of patients in specialist care indicate CFS occurs predominantly in females. Why the discrepancy? Female juvenile CFS patients are more likely to be seen in specialist clinics for two reasons, argues Dr. Crawley:
n According to a 2004 population study in Wichita, Kansas, the chief reporting symptoms of the two sexes differ. Girls are more likely to complain of recurrent sore throats and swollen glands, while boys are more likely to present with “concentration and memory problems.”
n The upshot, proposes Dr. Crawley, is that girls’ symptoms are more likely to be seen as health service problems, while boys’ symptoms may be addressed as attention and school attendance problems.
CFS Is Not ‘Psychological’
Various studies have found that somewhere between 25% and 70% of young CFS patients have associated symptoms of psychological distress such as depression, anxiety, and ‘somatization’ – and that they tend to have more distress than juveniles with other chronic disabling conditions such as rheumatoid arthritis and cystic fibrosis.
But no studies have demonstrated a cause-and-effect relationship. And a long-term study reported in 2004 “demonstrated convincingly” that the following factors were not associated with likelihood of physician-diagnosed or self-reported lifetime CFS CFS: “maternal psychopathology, parental illness, childhood or adolescent psychological distress, academic ability, atopy [allergic hypersensitivity], birth order, birth weight, or obesity.”
The Majority of Young People with CFS Do Get Better
A systematic review in 1997 suggested that at least 84% of CFS patients under age 16 make “a good or full recovery” – a much better recovery rate than for adults, and much better than most physicians may believe. This emphasizes the importance of seeing that healthcare professionals are educated to recognize the condition in youngsters and treat it, including associated symptoms of psychological distress.
Some Special Considerations in Diagnosing/Treating Juvenile CFS
All CFS patients tend to experience “payback” worsening of fatigue and other symptoms after physical, emotional, or cognitive exertion. But the amount of increased exertion associated with moderate or severe juvenile CFS may be very small. This means schooling and rehabilitation programs have to be carefully planned to avoid making symptoms worse.
Not all children will talk about poor sleep, or “fatigue.” But distressing problems that interfere with learning, such as not remembering lesson content from one day to the next, or a tendency to “phase in and out of conversation” are symptoms to look for.
Children affected by certain symptoms associated with CFS in adults – sore throats, swollen lymph nodes, headaches, and joint or muscle pain – are likely to be diagnosed as having recurring “tonsillitis.” If these youngsters have symptoms of fatigue as well, the physician should consider CFS.
The severity and symptoms of juvenile CFS vary greatly. For those who are mildly affected, clues may include, for example, ability to attend school but doing nothing when they get home; or a pattern of missing school at the end of the week.
More severely affected children will be unable to get out of bed, and are likely to be highly sensitive to noise, light, smells, some foods, and medications.
Diagnosis once CFS is suspected is a process of exclusion [based for example, on guidelines outlined in “A Pediatric Case Definition for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome,” by Leonard A. Jason, et al., and associated articles published in the Journal of Chronic Fatigue Syndrome, 2006 Vol. 13 Issue 2/3, pp. 1-44.]
* “Chronic Fatigue syndrome in Young People: The Spectrum and the Myths”, Crawley, E. British Journal of Hospital Medicine. 2006. Vol. 67, Issue 9, Sep 8, pp 452–453.