Research News

Pediatric researchers publish on CFS and FM
By Rebecca Moore
A number of recent papers in the medical literature have focused on issues involving children and young adults with chronic fatigue syndrome (CFS) and fibromyalgia (FM). Following is a review of the research.

An easier tilt table test?
Dr. Rosendo A. Rodriguez, MD, PhD, and colleagues at the Children's Hospital of Eastern Ontario, report in the August 1999 issue of Pediatrics that it may be possible to diagnose orthostatic intolerance (OI) in a way that is less traumatic for children. OI, a condition that involves a dramatic increase in heart rate and drop in blood pressure when the individual stands up, is normally diagnosed with a tilt table test that extends to the point where the child experiences light-headedness, dizziness, blurred vision, nausea or fainting. 

The researchers used transcranial doppler (a type of brain sonar scan) to measure blood pressure in the brain during the tilt table tests of 27 pediatric patients with a history of fainting. They report that when a child had an abnormal tilt table test, the doppler showed that blood flow to the child's brain decreased before the onset of severe symptoms and before a decrease in overall blood pressure could be detected. Their conclusion is that it may be possible to use transcranial doppler to shorten the test by stopping it as soon as cerebral blood flow changes occur and before the child becomes uncomfortable.

Why IV saline helps orthostatic intolerance
IV saline has been used to treat very severe orthostatic intolerance in some adolescents with CFS. The reasons for its effectiveness have been suspected, but not known. Dr. Thomas R. Burklow and colleagues from the Children's National Medical Center, the National Institutes of Health and American University have now found that increasing an individual's fluid volume with saline alters autonomic responses that may trigger blood pressure changes controlled by the brain. In the June 1999 issue of the Journal of the American College of Cardiology, they describe a study in which 12 adolescents had reproducible drops in blood pressure during a series of two tilt table tests. Abnormal heart rate data suggested that the withdrawal of sympathetic tone signaled by the brain caused the children's fainting during these tests. After the administration of one liter of normal IV saline over a period of 20 minutes, all of the adolescents had a third tilt table test, lasting 30 minutes, and none of them fainted.

In addtion, the relaxation of heart muscle previously seen was reversed following the administration of the IV saline.

Comparing CFS and FM in kids
In "Review of juvenile primary fibromyalgia and chronic fatigue syndrome," published in the August 1999 issue of Developmental and Behavioral Pediatrics, Lynn Breau, Patrick McGrath and Lilli Ju compare the prevalence, diagnosis, outcome, physiological factors, psychological factors and treatment of pediatric CFS and FM. These psychologists from Dalhousie University in Nova Scotia suggest the possibility that pediatric CFS and FM may differ from the adult versions of these conditions. Special emphasis is given to the pediatric diagnostic criteria that have been developed for CFS (by Dr. David Bell) and FM (by Drs. Yunus and Masi).

Breau, et al. suggest that pediatric CFS and FM may be variants of one syndrome, with a common genetic cause. In doing so, they highlight studies by Bell, Walford, Buskila and Roizenblatt, each of which found that the parents of children with FM or CFS are much more likely to have the same disorder as their child than are members of the general population. For example, Dr. Bell found that 50% of children who had both CFS and FM (four of eight) had a family member with CFS, and 42% of children with CFS alone (eight of 19) had a family member with CFS. Because Dr. Bell found this tendency for both FM and CFS to run in families, and it is common for children with each disorder to describe similar symptoms, Breau, et al. believe that there may be common genetic factors contributing to FM and CFS in children. 

Cause of dizziness in adolescents with FM
Researchers at the Medical College of Wisconsin have found that the dizziness of adolescents with FM is not caused by malfunction in the brainstem or inner ear. In "Pediatric fibromyalgia and dizziness: evaluation of vestibular function," published in the August 1999 issue of Developmental and Behavioral Pediatrics, they report that 12 adolescents with FM and dizziness had normal electronystagnography and rotary chair testing results, and essentially normal results for a battery of six other tests to diagnose problems with the inner ear, which play a large role in an individual's sense of balance. The authors suggest that "the presence of tender points in the head and neck muscles responsible for maintaining the sense of orientation in space may very well explain the complaints of imbalance in these patients." They comment that tender points in the muscles can cause autonomic disturbances and that autonomic and tilt table testing might be useful for the evaluation of adolescents with FM and dizziness.

Siblings also cope with CFIDS
When children have CFIDS or other chronic illnesses, they often become the focal point of family life and healthy siblings "are expected to accept all this and to act as messengers to the outside world." So writes Elizabeth L. Jackson in "The effects on siblings in families with a child with chronic fatigue syndrome," published in the Summer 1999 Journal of Child Health Care. Jackson, a nurse providing support to families with CFIDS in the UK, has identified the following factors that place stress on siblings in families where a child has CFIDS:

• Apparent dilution of parental concern or care;
• Loss of a previously healthy companion or rival;
• New restrictions imposed on family activities;
• Deterioration in peer relationships; and
• Uncertainty over how, whether and how much the sick child will recover.

Jackson reviews the psychology literature about siblings of ill children, describing common coping mechanisms, changes in siblings' roles in the family, and the emotions which siblings may experience. She points out that parents must not ignore the needs of siblings and that intra-family communication is important. She explains that when age-appropriate information about the child's illness is withheld from a sibling, it can result in fear, anger, frustration and a sense of rejection, all of which may cause loneliness, withdrawal, sadness and confusion. However, hope can be found in the conclusion she draws from studying the body of research-while pediatric illness is very stressful for the family, the majority of siblings cope without developing any psychiatric illness.

Essays by siblings and parents of young persons with CFIDS are available on the Association's web site.

If you are a young person with CFIDS, or the sibling or parent of a person with CFIDS, and would like to join the CYA Pen Pal Connection (part of the Association's Youth Program), send a SASE to CYA Pen Pal Connection, PO Box 220398, Charlotte, NC 28222-0398.

CFS, OI and Ehlers-Danlos syndrome
A study by Dr. Peter Rowe and colleagues at Johns Hopkins University published in the October 1999 issue of The Journal of Pediatrics explores the association of CFS and orthostatic intolerance (OI) with Ehlers-Danlos syndrome, an inherited disease of the connective tissue that causes the skin to become fragile, hyperelastic and bruise easily. The researchers found that 12 adolescent patients of 100 referred for evaluation of CFS had all three conditions, which is highly unlikely to be due to chance, as Ehlers-Danlos is extremely rare in the general population.

The researchers speculate that the link between these syndromes can be attributed to abnormal connective tissue in the blood vessels of individuals with Ehlers-Danlos. Because the walls of their blood vessels can expeand more than normal, those individuals may be more prone to increased pooling of the blood in the legs and feet, which causes the symptoms associated with orthostatic intolerance.

Rowe and colleagues suggest that pediatric patients with CFS and orthostatic intolerance patients be carefully evaluated for Ehlers-Danlos syndrome, and that more extensive research be conducted to confirm the connection.

Rebecca Moore is a former member of the Board of Directors of The CFIDS Association of America and founder of its youth program.