Developments in pediatric ME/CFS

Dr. Alan Gurwitt was particularly interested in news and developments in pediatric ME/CFS and had attended a workshop on the same, chaired by Dr. Miike from Hyogo, Japan. Dr. Gurwitt was pleased to see that the workshop was very well attended by researchers and clinicians from literally all corners of the world. He found this most encouraging, given the shortcomings in pediatric diagnosis and treatment during earlier years.

Diagnosing pediatric ME/CFS

Evaluating children with CFS has been a challenge for quite some time, especially since the 1994 U.S. Fukuda criteria was developed for adults and adult manifestations of the illness. It was really not adequate for use in children and adolescents, explained Dr. Gurwitt.

Approximately 6 years ago, an international group of ME/CFS researchers and clinicians was formed and they co-authored criteria specifically intended for children called, Pediatric Case Definition for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (Dr. Leonard Jason, et al).

He stated there are differences in the characteristics of CFS between children and adults. In particular, children tend to have more abdominal pain and rashes.

Lack of understanding of ME/CFS in schools

Part of the pediatric criteria includes references that could be used by school personnel. However, Dr. Gurwitt finds that schools still show limited knowledge and understanding about CFS in children and their tendency is to suspect "school phobia" in children ill with ME/CFS.

At the workshop, he discovered the situation was not much better for children with ME/CFS in many other countries. Another terrible situation faced by some families has been the faulty accusation of Munchausen syndrome by proxy (i.e., the child's illness is assumed to be fictitious and to be caused by the parent or parents).

Dr. Gurwitt is very disturbed by such occurrences of pure ignorance and undue hardships to families, and urged action by ME/CFS organizations to find ways to educate physicians and school personnel in how to distinguish phobias from legitimate illness such as ME/CFS.

Precipitating events in pediatric ME/CFS

The pediatric workshop reported a variety of news, such as how infectious mononucleosis was found to be a fairly common pre-illness event in children and youth who developed CFS (i.e., in about half of the cases); in some cases, immunizations were thought to be the precipitators of CFS-like conditions (i.e., no particular vaccines were identified but Dr. Nancy Klimas is working to clarify this); mold exposure was reported by some families as another CFS trigger; and Japanese researchers identified chronic sleep deprivation in children and teenagers as a major precipitator of CFS. Children as well as adults in Japan appear to be at a higher risk for sleep deprivation.

Treatment

Melatonin was the sleep agent most used in children. Though Ritalin was used fairly often, many researchers/clinicians are quite concerned about its use in children with CFS. The Japanese research group described an intense treatment regimen they created for children/youth with CFS, which usually included hospitalization and intensive sleep-wake circadian rhythm treatment to help restore their circadian rhythms—good results were reported on improvements made with their sleep disturbance, but not of all their CFS-related symptoms.

Dr. Katherine (Kathy) Rowe was recognized for the program that she had helped to develop and implement at the Royal Children's Hospital in Melbourne, Australia. Dr. Gurwitt described the Australian program as being "sophisticated and methodical" and unlike anything that other countries are doing.

This program has followed close to 800 children (pediatric patients) for over 15 years, which has allowed them to create a history of the illness. The extensive information collected at scheduled intervals throughout this period of time included duration, recovery, education, work, treatments/diets, and other events and changes in these patients' lives. Although the average duration of illness was 5 years, this level of follow-up and ongoing support continued for many years.

The Australian program requires that new patients undergo a very careful evaluation for ME and the evaluation process include the parents-both parents, with a special emphasis about not leaving fathers out.

Once a diagnosis has been made and appropriate treatments started (i.e., standard medications or therapies), other interventions also include family counseling, maintaining close contact with schools, and helping with necessary adaptations for the patient's/student's educational needs.