Attention focused on pediatric CFS

Bryan D. Carter and Mark S. Smith moderated an informative discussion about pediatric CFS on Saturday evening.

Dr. Carter is a pediatric psychologist who studies the impact of chronic illnesses on children and their families in Louisville, Ky. He began his talk by pointing out some of the problems inherent in doing research on children, such as:

• Most psychological tests are geared toward psychiatric, not chronic illness, so test results are biased toward finding psychiatric illness;
• It is difficult to get funding for psychosocial studies that don’t have a strong medical component; and
• Information about symptoms and response to treatment may be less reliable when it comes from multiple sources (child, parent, teacher, peers, etc.).

Delay in diagnosis harmful
Dr. Carter also expressed concern over the case definition’s six-month illness requirement, saying that waiting six months in a child’s life prior to diagnosis or treatment could promote the development of inappropriate coping techniques or retard normal social development.

Dr. Carter finds that his young CFS patients and their families have an extreme resistance to psychological interventions, even when they are paired with medical treatments, unlike what he finds in kids with cancer, for example. He hypothesized that this may be due to the damaging approach physicians have used with these patients, which creates a profound need to feel that the illness--as well as the patient--is being validated. A well-delineated diagnosis and treatment approach are essential, as they may make the patient more open to trying new ways of coping, as well as to facilitate the provision of accommodations in the schools.

Dr. Smith, a pediatrician associated with Dr. Dedra Buchwald’s CFS center at the University of Washington, discussed the diagnosis of CFS in children and adolescents.

The most frequent symptoms he sees in kids are (in order): headache, weakness, exercise intolerance, sore throat, concentration problems and muscle pain. Compared with adults, he sees fewer fibromyalgia-type symptoms, rarely finding more than four tender points in a child.

Although he doesn’t do a formal cognitive assessment, he sees concentration problems in more than 50% of kids with CFS. He wondered aloud whether kids really have more cognitive problems than adults, or whether more attention is given to kids’ memory and concentration difficulties because they are frequently tested in the schools.

Formal statement proposed
Drs. Carter and Smith wrapped up the discussion by recommending that researchers take the lead in making a statement about the seriousness of CFS in kids. Some of the suggestions included:

• CFS should be diagnosed in kids when and if they meet the case definition.
• The diagnosis should be made as early as possible to prevent further damage to the child’s self-esteem.
• Kids with CFS should be treated with appropriate medical interventions, as well as with care and sensitivity to their feelings.
• There is a need for research on diagnosis, prevention and treatment of CFS in kids.
• Clinicians must be educated about the diagnosis and treatment of CFS in kids.
• Physicians should intervene to ensure that kids with CFS maintain their educational and social networks.

The doctors said they hoped to submit a position paper with these statements to a major medical journal with the purpose of significantly advancing the research agenda. The CFIDS Chronicle will closely follow any developments that come from this meeting.