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The latest information on
research, treatment and diagnosis of CFIDS
outlines research priorities
The most immediate priorities for CFS research are
standardizing a case definition and severity classification system, developing
treatments and management strategies and better understanding the symptoms,
according to a new report from an independent panel of
The 40-page Draft CFS/ME Research Strategy was developed by
the U.K. Medical Research Council’s CFS/ME Research Advisory Group at the
request of the British Chief Medical Officer (CMO). This request followed the
January 2002 publication of the CMO’s CFS Independent Working Group report. (In
, CFS is
also known as myalgic encephalomyelitis, or ME.)
Like the CMO report, the new document stated that “CFS/ME is a
real, serious and debilitating condition, and that research into all aspects of
CFS/ME is needed.” Both reports emphasized including the most severely ill
patients in research, since so little is known about this group of patients, and
including patient organizations in the development of research studies.
The new report says that research into potential causes of CFS
should have a lower priority because the scientists believe it would have less
immediate impact on increasing understanding of CFS and reducing the suffering
of patients. The panel did not establish priorities for health services research
because of the lack of validated information on what services are most helpful
to people with CFS/ME.
ANS deserves more study
The consensus statement from The CFIDS Association of
America’s first research symposium has been published in the December 2002 issue
of the peer-reviewed journal Neuroimmunomodulation. The statement
represents the opinions of a panel of top-level scientists who met in December
2000 to explore the evidence for autonomic nervous system (ANS) dysfunction (see
glossary), outline the limits of current knowledge, and improve and accelerate
The scientists identified the following as top priorities for
future ANS research: exploring the relationships among the
hypothalamic-pituitary-adrenal axis, ANS and immune system and how these
relationships contribute to cardiovascular regulatory complications and immune
function alterations; understanding the role of other reported abnormalities in
CFS, such as increased inflammatory cytokines and brain blood flow alterations,
on ANS function; and testing relevant treatments in subpopulations of people
with CFS and ANS dysfunction.
The consensus statements from the Association’s second and
third symposia, on the roles of the neuroendocrine and immune systems in CFS,
are currently under review by peer review journals (see glossary).
Cytokine causes rapid increase in CFS symptoms
Scientists at the National Institutes of Health (NIH) have
found that administration of interleukin-6 (IL-6), a pro-inflammatory cytokine
(see glossary), causes a more rapid onset of flu-like symptoms in CFS patients,
compared with healthy controls.
The 19 CFS patients immediately experienced an increase in
aches, fatigue and fever, while the 10 controls did not experience symptoms for
six hours. This suggests that people with CFS have an increased sensitivity to
IL-6; however the researchers were unable to identify a reason that this would
be the case.
Contrary to the researchers’ hypothesis, the CFS group did not
score worse on tests of cognitive function than the controls. This paper was
published in the August 2002 issue of Psychological Medicine.
Nutritional supplement has no effect on symptoms
Researchers in the Nether-lands report in the October 2002
issue of Quarterly Journal of Medicine that an antioxidant nutritional
supplement with vitamins, minerals and co-enzymes did not improve CFS symptoms.
The double-blind, placebo-controlled treatment study evaluated
fatigue severity, CFS case definition symptoms and function following 10 weeks
of treatment with the polynutrient formula. The researchers found no differences
on any measure among the 27 people who were given the treatment and the 26 who
received the placebo. All patients met the 1994 CFS case definition criteria
(see glossary) and had high levels of fatigue severity and disability.
CFS patients similar across practices
CFS patients who visit immunology clinics have very similar
characteristics to those who visit psychiatry practices instead, according to a
study in the September 2002 issue of the Journal of the Royal Society of
Symptoms, degree of disability, quality of life, psychological
distress and visits to mental health professionals were all similar among the
two sets of CFS patients. The only factors that differed among the 37 immunology
patients and the 36 psychiatry patients were gender and illness attribution. The
immunology patients were more likely to be men and to attribute their illness to
The study authors say these findings should allow researchers
to generalize results from one type of CFS clinic to other CFS populations.
Mycoplasma found in European CFS patients
A new study has found that Mycoplasmal species infections were
detected in 68.6 percent of 261 CFS patients in a Belgium CFS clinic, compared
to only 5.5 percent of 36 healthy controls. Mycoplasmas, which are tiny
parasites, have also been found in higher rates in American CFS patients. The
authors suggest that the high rates of Mycoplasma in CFS provides further
evidence for a role of the agent in the pathophysiology of CFS as a cause,
co-factor, exacerbator or result of the illness. This study was published in the
November 15 issue of FEMS Immunology and Medical Microbiology.
CFIDS Glossary: Terms You Need to Know
Autonomic nervous system (ANS): The segment
of the central nervous system that controls involuntary body functions, such as
the strength and frequency of heartbeats, breathing, digestion, sweating and
secretion from certain glands. Dysfunction in the ANS appears to be common in
people with CFIDS (PWCs). Recent research shows that 40 percent of PWCs suffer
from orthostatic intolerance — an ANS-related condition that causes dizziness
and other symptoms upon standing.
Case definition: Short for the 1994 International
Research Case Definition of Chronic Fatigue Syndrome. This document outlines the
symptoms commonly found in people with CFIDS. Originally intended for use by
researchers to help define populations of people to study in CFIDS research, the
case definition is also used by physicians to help diagnose CFIDS. For details,
see the inside back cover of this issue.
Cytokines: Proteins that are produced by white blood
cells and help control the body’s immune system response. The body creates more
than 100 different types of cytokines, each controlling a specific reaction. The
balance of cytokines in PWCs is often disturbed. For instance, many PWCs have
elevated levels of a cytokine called interleukin-1-alpha (IL-1-alpha), which
promotes inflammation. The exact role of cytokines in CFIDS remains unclear;
whether the cytokine levels somehow cause CFIDS, or whether they are a reaction
to another problem, is unknown.
Peer-reviewed: Papers that have been approved for
publication by experts in the particular field of research. Peer-reviewed
journals are considered the gold standard of research publications, since the
articles in them have passed muster for accuracy, completeness, selection of
study subjects and other criteria. Most of the world’s prestigious medical
journals, including The Lancet, the Journal of the American Medical Association
and Science, are peer-reviewed publications.