Poster presentations of research added
alternative and international
perspective to the conference. Most were done by teams of researchers, and the name listed here is that
of the member who officially presented the poster at the conference. Several studies that have been reported
previously in the Chronicle are not included here.
relationship between CFS, fibromyalgia
and multiple chemical sensitivity (MCS) was explored by Albert Donnay. Of 100 patients in Grace Ziem's
MCS practice, 88 met the criteria for CFS, with more than half of them also meeting the criteria for fibromyalgia.
Only 10 patients had MCS without meeting criteria for CFS or fibromyalgia.
In an effort to identify causative
and/or influencing factors that
would differentiate patients who met criteria for CFS from those with chronic fatigue who did not meet
CFS criteria, Brigitta Evengard of Sweden used a variety of questionnaires with nearly 400 patients. They
found no differences between the groups in functional capacity, sense of coherence, depression and symptoms.
Those who met the CFS criteria were more likely to be female, had an infectious-type onset and sought
specialized care sooner after becoming ill.
A team of medical school researchers
in Brazil found that only 35%
of doctors and community health workers were familiar with CFS. Those who were believe CFS is a rare disorder
and that it is associated with personal and family problems, stress and viral infections. Luis C. Nacul
reported that prevalence of CFS in Brazil appears similar to that in developed countries.
An Italian group reported its efforts
to classify several hundred
CFS patients there into subgroups on the basis of various lab tests, brain scans, neuropsychological tests
and symptoms. Delia Racciatti reported that CFS in Italy appears to be a heterogeneous illness with several
causes and patterns.
Hypothesizing that patients may not
reliably perceive improvement
or decline in their condition, researchers in Tulsa, Okla., established a baseline of patients' physical
and mental functioning using a Short Form 36 (SF-36) assessment and repeated it one year later. At that
one-year point, patients were asked to rate their condition from much better to much worse. There was
no correlation between how patients reported their condition and either positive or negative changes in
the SF-36 assessment. Stanley N. Schwartz concluded that reliance on patient self-assessment may be one
reason certain treatments have appeared to yield different results in different studies.
Lana A. Tiersky and colleagues in New
Jersey questioned whether the
1988 and 1994 CFS case definitions identified the same illness. Of 62 subjects analyzed for symptoms and
illness course, 45 met both the 1988 and 1994 criteria, while 17 met only the 1994 criteria. Those who
met the 1988 criteria were found to suffer from a more severe form of the illness, with a sudden onset
following a flu-like infection. The researchers concluded that the two case definitions appear to identify
distinct groups. They hypothesized an infectious cause for the illness in those meeting the 1988 definition.
Neil McGregor and colleagues in Australia
challenged the current
case definition for CFS to determine if it identified a homogeneous or heterogeneous set of patients.
The researchers analyzed data from several CFS studies based on patient symptoms, onset events, urinary
amino and organic acid and serum lipid profiles. They found many ways to subdivide CFS patients, but the
various factors produced inconsistent groupings. The researchers concluded that the current CFS definitions
either lack standardization or the exclusion criteria are insufficient to exclude all other fatigue disorders.
In another effort to subdivide CFS
patients, Theresa L. Walker of
Eli Lilly and Co. interviewed 40 patients at a University of Michigan clinic and found the subjects easily
divided into two groups based on a self-rating of symptom severity. However, those two groups were not
distinguishable by age, exercise, activity (work vs. disability), sleep habits, medications (allopathic
or alternative), weight gain or loss, and their perception of the cause of their illness. That subdivision
of patients also did not correlate with improvement in health or disability after a year's treatment.
of coagulation and thickening
of blood can be treated with the anticoagulant drug heparin, said David Berg of HEMEX Laboratories in
Phoenix, Ariz. His laboratory tested the heparin on a small group of CFS patients whose blood tests showed
thickening, and most patients reported improvement of headache, fatigue and pain symptoms.
As an alternative to growth hormone,
Paul R. Cheney of North Carolina
treated a small number of patients with plant-derived bioactive polypeptides known to increase IGF-1 levels.
After 60 days of treatment, more than half the patients reported improvement of symptoms, and IGF-1 levels
were normalized in those who responded.
In a five-year follow-up of young patients
treated with intravenous
gammaglobulin, Katherine Rowe of Victoria, Australia, reported that there was no persistent deterioration
in function related to CFS in any young person, although a significant number remained disabled. The subjects'
immune responses before the trial did not predict functional outcome after five years.
Responding to findings that urinary
serine levels were low in most
CFS patients, Rosamund Vallings of New Zealand offered patients serine supplementation. Patients reported
"considerable" benefit from the treatment.
from eight patients and
14 controls were cultured in the presence and absence of different mutagens in a laboratory study led
by Kenny De Meirleir in Brussels. The findings suggest abnormalities in intracellular protein metabolism
and increased sensitivity to alcohol.
Immune activation as defined by elevated
T-cells is associated with
measures of psychological distress and attitudes about oneself, according to a study by Lynn Helder of
Biodoron Psychology, Hollywood, Fla. Psychological distress may have a stronger relationship with immunologic
functioning in those CFS patients who are the most ill, as suggested by T-cell analysis.
Noting that exercise can be a useful
tool in stimulating an immune
response, John LaManca and colleagues in New Jersey matched CFS patients and non-exercising controls.
While the exercise evoked significant immune response as measured by blood testing of lymphocytes, cytokines
and NK cells, there were no significant group differences between patients and controls.
Testing a hypothesis about possible
allergies to various metals being
a part of CFS, Gudrun Lindh and colleagues in Sweden found that nickel sulphate allergy was significantly
more common among the CFS patients, and particularly females, than among controls. The researchers suggested
that nickel or metals reacting with it might play a role in causing a chronic stimulation of the immune
system, or nickel allergy could simply be a symptom of that immune stimulation.
The presence of virus-like structures
in peripheral blood lymphocytes
may correlate with patients who relate onset of CFS to an acute fever, according to laboratory study by
Michael Holmes of New Zealand.
Nancy Klimas of Florida reported that
her ongoing study involving
lymph node biopsies supports the hypothesis that CFS is a disease of the immune system, based on the concentrations
of activated T-cells.
Jeroen Visser of the Netherlands presented
laboratory research showing
that cytokine production is affected abnormally by glucocorticoids in CFS patients.
about half of family doctors
in the Netherlands use the diagnosis of CFS, while only 10% felt able to give sufficient information about
CFS to their patients, Ellen Bazelmans reported. Doctors said they were less sympathetic to CFS patients'
complaints, attributing those complaints mainly to psychosocial factors, while patients mainly attributed
their illness to physical causes.
The same Dutch research group studied
whether CFS affects more women
than men because women are at greater risk for overload by the demands of work, home and family. They
also theorized that since women who become sick may not be able to quit the latter roles as easily as
men, they would have a worse prognosis for improving their health. They found little evidence for the
theory, except that women who had children at home, regardless of whether they worked, experienced a worsening
of impairment during the study.
Bazelman's colleague, Gijs Bleijenberg,
reported a comparison of
fatigue in cancer patients who in remission to fatigue in CFS patients. In contrast to CFS patients, cancer
patients in remission had lower scores for depression and perceived few physical, social and emotional
health problems, although those who suffered from the most severe fatigue had scores for depression and
reported other symptoms at rates comparable to CFS patients.
Bleijenberg also reported on a comparison
of bedridden CFS patients
to non-bedridden CFS patients. Twenty bedridden patients were recruited by the Dutch M.E. Association
and were visited at home. The researchers found the bedridden patients were more fatigued, experienced
more impairment in basic activities, were less active, had more current psychiatric disorders., appeared
more focused on physical discomfort, and reported more physical complaints.
Christopher Christodoulou in New Jersey
reported a study based on
the tendency of CFS patients to be dissatisfied with their cognitive functioning, even when neuropsychological
studies show that cognitive deficits are more mild than perceived. The study involving just five patients
used functional MRI scans to examine the pattern of neural activation associated with that dissatisfaction.
The results suggested that those who viewed their cognitive performance as substandard might be delayed
in developing a routine brain response and so may perceive greater fatigue. Using the same set of subjects
and functional MRI scans, Gudrun Lange implicated changes in specific brain regions for impaired performance
on a memory task.
The fatigue experienced by multiple
sclerosis (MS) patients is different
from the fatigue experienced by CFS patients, according to research presented by Christodoulou. Relative
to total fatigue scores, on which CFS patients were higher, CFS patients showed greater mental fatigue
while MS patients showed greater physical fatigue. The researchers suggest that clinicians treating CFS
through gradual increases in activity may want to include mentally demanding activities, such as balancing
a checkbook, in addition to purely motor activities.
Women with CFS who participated in
group therapy to help them deal
with their illness and life situations reported the therapy was helpful, particularly through the exchange
of personal experiences. However, their fatigue and formally measured quality of life were not affected,
according to a presentation by Brigitta Evengard of Sweden.
Peter Madill conducted a group therapy
experiment at his private
practice in Sebastopol, Calif. Results suggested that group sharing in the model of the Stanford University
cancer therapy group program and qigong exercises enhanced cognitive behavior therapy in the group setting,
at significantly reduced cost to individual therapy.
When CFS patients and controls were
compared on four cognitive tasks
during rested and fatigued states, only small differences were found in cognitive functioning and electrical
brain activity, according to research presented by Ronald Gordon of the University of California at Irvine.
The most significant differences were on tasks that required neural mechanisms for motor preparation and
CFS and MS groups were comparable in
their depressive style in attributing
causes for good and bad events and shared a difficulty in describing and differentiating emotions, reported
Susan K. Johnson of the University of North Carolina at Charlotte. This likely reflects the demoralizing
effects of coping with a chronic, disabling illness. However, CFS patients showed a lack of trust in medical
professionals, reflecting the added burden on CFS subjects of an illness that lacks medical legitimacy.
Lana A. Tiersky of New Jersey reported
a study that looked at whether
individuals with CFS experience more negative and stressful life events than healthy individuals. CFS
subjects reported significantly more negative life events than healthy controls. CFS patients with a psychiatric
disorder predating CFS experienced even more negative life events following the onset than did others.
The researchers concluded that a pre-illness psychiatric history could make individuals particularly vulnerable
to the negative experiences associated with chronic illness.
canal teeth contain significant
amounts of xenobiotic toxins (an antibiotic chemical substance not produced by the body), according to
analysis of teeth removed from five CFS patients. Paul R. Cheney of North Carolina concluded that a subset
of patients may respond significantly to extraction of root canal teeth, but clinical improvement may
not result because teeth may not be the only source of toxins.
Three human pathogenic mycoplasma species
(fermentans, hominis and
penetrans) were detected at rates of about 50% in persons with CFS, fibromyalgia, rheumatoid arthritis
and Gulf War syndrome, according to Paul Choppa of Immunosciences Laboratories in Beverly Hills, Calif.
A study that looked for evidence of
Borna disease virus in Swedish
CFS patients found no evidence for an involvement of Borna disease virus in CFS. However, the response
to a control antigen used in the testing of these 169 patients leaves open the hypothesis that an unknown
infection may be involved, according to researcher Brigitta Evengard.
However, Susan Levine of New York tested
serum samples from 77 CFS
patients and 33 controls for Borna disease virus. Thirteen samples from CFS patients and two from controls
showed immunoreactivity to Borna disease virus proteins. Both researchers said more study was needed.
Researchers in Scotland spent two years
looking for evidence of Borna
disease virus and five other infective agents in CFS patients. Kathleen Simpson reported that none of
the controls showed evidence of any of the viruses. Four of the CFS patients were infected with hepatitis
B, three each with varicella zoster virus and Borna disease virus, and two with brucella. None had enteroviruses
or influenza B. None of the infectious agents were present in a statistically significant number of cases
and none of the patients had evidence of dual infection. The researchers stated that the data highlights
one difficulty of working with CFS patients-that patients may be suffering from undiagnosed, less common
infections, and that could make data from CFS research misleading.
Lawrence A. Klapow of Burlingame, Calif.,
found decayed evidence
of a suspected roundworm, cryptostrongylus pulmoni, in sputum samples from 11 of 28 CFS patients he examined.
The usual indicators of roundworm infection-high levels of eosinophil blood cells and positive stool tests-were
with CFS had a distinct response
to orthostatic stress (tilt table), with increased tendency to rapid heart rate and decreased cerebral
blood flow velocity, and an exaggerated response to isoproterenol, according to Mark E. Alexander of Boston,
Mass. Therapy for orthostatic intolerance improved the reported well-being of the CFS group. In another
tilt-table study, Antonio Sisto of Italy reported results that support the association between CFS and
neurally mediated hypotension.
A bicycle exercise test was used by
Pascale De Becker of Brussels
in an effort to find an objective measure of "50% reduced activity." CFS and fibromyalgia patients had
a working capacity that was at least 40% lower than the controls, which the research team said objectively
proved their physical disability. They speculated that severe muscle weakness, not deconditioning, was
the reason most patients did not reach 85% of their target heart rate. De Becker also examined the prevalence
of respiratory symptoms in CFS patients and considered the value of pulmonary function testing. Compared
to a control group, CFS patients had similar total lung capacity, but there were significant differences
in vital capacity (the amount of air that can be expelled) and residual volume. This may explain, at least
partially, the respiratory symptoms observed in most CFS patients.
Following reports of elevated substance
P (which contributes to pain
signals in the nervous system) in fibromyalgia patients, a study in Sweden attempted to find the same
condition in CFS patients. The levels of substance P were normal in patients who met the criteria for
CFS but not for fibromyalgia. Brigitta Evengard reported this supports the notion that fibromyalgia and
CFS are different disorders.
John Gow of Scotland reported that
the passage of calcium ions across
cell membranes might be a factor in CFS, as excessive calcium influx into muscle cells leads to depletion
of energy reserves. Analysis of muscle biopsies from 16 patients indicated an upregulation of the muscle
genes involved in handling the calcium ions.
Case histories of two female athletes
who were overtraining before
onset of CFS suggest that overtraining may have suppressed their immune function and increased their susceptibility
to develop CFS, according to J. Mantalvan of Fitness/Works LLC in Bethesda, Md.
CFS patients and controls have similar
balance before exercise, but
after exercise, CFS patients had poorer balance, but only with eyes closed, according to Lorna Paul of
Scotland. Because between 30% and 70% of CFS patients suffer from dysequilibrium, the researchers are
pursuing further studies with more sensitive measurements in more dynamic conditions.
Hirohiko Kuratsune of Japan reported
a study that found a possible
correlation between blood flow in the brain and concentrations of acylcarnatine, suggesting that metabolism
of acylcarnatine may be related to the pathogenesis of CFS. Similarly, research in Italy reported by Delia
Racciatti confirmed brain perfusion impairment in CFS, providing objective evidence of central nervous
Studies expand knowledge of RNase
L in CFS
Several presentations were made about the RNase L research
in Dr. Robert Suhadolnik’s
lab at Temple University. Dr. Suhadolnik hypothesizes that the 2-5A synthetase/RNase L pathway is not
functioning normally in people with CFS. This pathway is a natural defense against viruses and regulates
cell growth and differentiation. RNase L, the key enzyme in the pathway, degrades RNA, especially viral
Previous studies (funded by The CFIDS
Association of America) have
shown this pathway to be overactive (or upregulated) in CFS. In 1997, Dr. Suhadolnik’s research group
published the first evidence for a new, smaller form of RNase L in some people with CFS. It was named
low molecular weight (LMW) RNase L because it is smaller (37 kDa) than the usual form (80 kDa).
On the basis of these results, an expanded
study was designed in
collaboration with Drs. Dan Peterson and Paul Cheney. The 53 CFS patients in this study fit the 1988 and
1994 definitions for CFS, had a Karnofsky score of 60 or less, and expressed fatigue, neurocognitive complaints
and pain as their main symptoms. Consistent with earlier samples, the CFS group had higher concentrations
of bioactive 2-5A compared to 37 healthy controls, a higher activity of RNase L and more of the LMW RNase
In addition, as the amount of the normal
RNase L increased, the amount
of the LMW RNase L decreased. This may mean that the LMW RNase L is formed from the larger 80 kDa RNase
L. All measurements of the pathway activity increased as the Karnofsky score decreasd. In other words,
the patients who felt the sickest had the highest level of dysfunction in the 2-5A synthetase pathway.
Dr. Suhadolnik also learned that the
smaller LMW RNase L is more
active and harder to control compared to the normal 80 kDa RNase L.
Continuing studies (supported by the
National Institutes of Health)
aim to determine whether the LMW RNase L is unique to CFS and could eventually be used as a diagnostic
test for CFS, and to test the hypothesis that the LMW RNase L originates from the 80 kDa RNase L.
--Nancy Lee Reichenbach