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November - December 1999
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.
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.
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.
the relaxation of heart muscle previously seen was reversed following the
administration of the IV saline.
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).
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
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
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:
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
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.
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
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
Rebecca Moore is a former member of the Board of
Directors of The CFIDS Association of America and founder of its youth
Twins study needs
Studies of identical twins have produced important data on the
influence of genetics on a wide variety of medical conditions. Dr. Dedra
Buchwald of the University of Washington at Seattle has been working with the
Swedish Twin Registry, the world's largest and oldest twin registry, to learn
more about the influence of genetics on the development of CFIDS. This registry
has collected data on CFS in thousands of twins as part of another study.
Although the collection process has been exceedingly costly, the Swedish Twin
Registry has offered to allow Dr. Buchwald access to the data, as
well as to additional data collected on a larger sample of twins.
Buchwald is asking for donations to help pay for this important research. The
overall cost of the study is $57,000, but $17,000 is needed by December for the
study to continue. If you or someone you know is interested in helping, you may
send donations to: Suzanne Ashton, Research Study Supervisor, General Internal
Medicine, CFS Cooperative Research Center, 325 Ninth Avenue, Box 359780,
Seattle, WA 98104. Checks should be made payable to University of Washington,
with "twin study" in the memo field. All donations are tax-deductible to the
full extent allowed by law.
Severe CFIDS has poor
According to a new study, only about four percent of patients
with severe CFIDS recover. Dr. Nancy Hill and colleagues at the New Jersey
Medical School in Newark found that only one out of 23 patients "recovered
fully" during four years of follow-up after being diagnosed with severe CFIDS,
according to the 1988 CDC definition. However, while only one of the patients
was considered to be recovered, nine demonstrated improvements in their clinical
symptoms during the study, which was reported in the September issue of
Archives of Physical Medicine and Rehabilitation. Not surprisingly,
those who improved clinically also demonstrated improvements in mood. Of the 15
patients who were characterized as "disabled" at the beginning of the study, 12
were still unable to work at last follow-up. Only one patient was found to have
an underlying medical condition-hypothyroidism. The authors note that this
demonstrates that the symptoms of chronic fatigue syndrome can rarely be
attributed to other known causes.
See page 3 for reprint order
Paper argues for
Simon Wessley and colleagues have published an article
in the British medical journal Lancet (1999; 354:936-39) questioning
whether irritable bowel syndrome, non-ulcer dyspepsia, premenstrual syndrome,
chronic pelvic pain, non-cardiac chest pain, hyperventilation, tension headache,
temporomandibular joint dysfunction, atypical facial pain, globus syndrome,
multiple chemical sensitivities, fibromyalgia and chronic fatigue syndrome
should all be lumped together. The authors suggest that all of those conditions
are manifestations of a single syndrome, which they call "functional somatic
They arrived at their conclusions by
reviewing the research literature to see if the published diagnostic criteria
for each of the "syndromes" overlapped at all, whether the patients identified
as having one syndrome met the symptom criteria for others, and whether there
were similarities across syndromes in terms of sex, coexisting emotional
disorders, prognosis and response to treatment. The only treatments discussed
are cog-nitive behavioral therapy and antidepressants. The Association has asked
leading CFIDS researchers and clinicians to respond with letters to the editor.
To view an abstract of the article, go to the Lancet web site at
Writing in the Journal of the National Cancer
Institute in mid-August, a research team led by Dr. Irene Jacob
reported they had detected the DNA of Epstein-Barr virus in 51 of the 100 breast
tumors they sampled, but in only three of 30 samples of normal tissue. It has
been proven that mice can get cancer through spread of a virus-the mouse mammary
tumor virus (MMTV) can be spread from mother to offspring through her milk.
Other researchers, including a group at New York's Mt. Sinai School
of Medicine, have found variants of the MMTV genes in human breast cancer
tumors. It is too soon to tell exactly what these findings mean, but research
continues to study this phenomenon to determine its relationship to the
development of cancer.
CFIDS in the
The journal Medical Crossfire recently featured CFIDS
on its cover and in a lengthy article about various treatment options. The
journal, which is distributed to close to 100,000 primary care physicians in the
U.S., serves as a national platform for peer exchange on controversies in
medicine. The journal's editor quotes Michelle Akers' description of her
symptoms (like running up a hill in a stiff wind with a 100-pound weight on her
back) in his column and notes her public comments on chronic fatigue syndrome
have helped legitimize patients' suffering.
The article presents a debate
on the issue among a panel of experts that included Dr. David Bell, Dr. Paul
Levine, Dr. Benjamin Natelson and Dr. Peter Rowe. Discussion focused around
possible causes for the symptoms of CFIDS-including chronic sinusitis, allergies
and neurological conditions-as well as treatments for each of the widely varying
"The most important point for primary care physicians is that
the first step in treating a patient with CFS is accepting that the patient does
have a disorder that is now well recognized by the medical establishment, and,
in doing so, validating that the person is sick," summarized Dr. Levine.
"Effective treatment focuses on relieving the most distressing symptoms and
improving functioning." The Association is preparing comments on the article.
Response to Annals
When an article suggesting CFIDS is a form of mass
hysteria/somatisation disorder was published in the Annals of Internal
Medicine this summer, the Association responded by asking physicians and
clinicians to write letters to the editor (a similar approach is being utilized
for a recent Lancet article--see "Paper argues for clumping
syndromes," above). The good news is that the journal has paid attention to
the amount of feedback they have received on this issue. We have heard back from
several researchers and health care professionals whose letters have been
accepted for publication.