Rainbow at shoreline

The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. The Massachusetts CFIDS/ME & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.

New developments in pediatric ME/CFS

Session 7

Identification of biomarkers for CFS in children (8-17 years old) looking at specific genetic and innate immune parameters was the object of study presented by Ritchie Shoemaker (Maryland, USA).  He had found an association of increased auto-immune abnormalities and elevated TGF-β, a cytokine associated with abnormalities in T-regulatory lymphocyte function. All cases of CFS were clearly identified.

Leonard Jason (Chicago, USA) examined the criteria used to diagnose ME/CFS in pediatric samples. The 2006 criteria for diagnosing pediatric CFS evidenced 97% sensitivity and 100% specificity. Findings suggest that the 1994 Fukuda criteria are less effective in making a correct diagnosis, with only 76% sensitivity.

The clinical characteristics of 81 Belgian adolescents with Chronic Fatigue were described by Greta Moorkens (Antwerp, Belgium). One in three complained of headache or muscle ache, one in five complained about concentration or memory problems. Sleep studies and psychological testing was only performed in one in four of the group (probably due to parent or adolescent opposition) but were found to be abnormal in 60% of those tested.

Up to 68% of children with CFS are prevented from attending school, and the characteristics and recovery of these housebound children was addressed by Esther Crawley (Bristol, UK). Of 46 children assessed,13 did not have a primary diagnosis of CFS, despite having been diagnosed by a pediatrician. This was a prospective study and at follow up (between 8 and 39 months) 4 had recovered completely and 6 were well enough to attend school. She then looked at whether patterns of symptoms suggest distinctive subtypes of pediatric CFS. She concluded that CFS is heterogeneous in children and the different factors may represent different underlying disease processes. Age, length of illness, anxiety or depression had no bearing on the 3 different factors identified by factor analysis. Cluster analysis identified 5 groups of children, which could be discriminated using regression analysis, which showed significant differences between the groups in terms of number of symptoms, fatigue and physical functioning.

Sanae Fukuda (Osaka, Japan) used sleep scores to distinguish between children at high risk of developing childhood CFS and general healthy students. The sensitivity of the sleep score was 85 with a specificity of 75.4. Intervention with sleep practices and CBT should be considered for high risk children. Also from Japan Kei Mizuno (Osaka, Japan) had looked at selective and divided attention in childhood CFS. Findings suggest that this maybe impaired. 3 types were identified. Functional MRI will be used to clarify the neural substrates associated with divided attention.

Notice about names

The Massachusetts CFIDS/ME & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and  Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) are currently using ME/CFS. The Centers for Disease Control and Prevention (CDC) are calling the illness CFS.

Until there is consensus on a name for the illness, the Massachusetts CFIDS/ME & FM Association name will not change.