January - February
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
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.
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.