By Wendy Braun / Saturday Evening Post
Chronic fatigue syndrome (CFS): No cause, no cure, no hope? No way,
says Suzanne Vernon, Ph.D., Scientific Director of the Chronic Fatigue
and Immune Dysfunction Syndrome (CFIDS) Association of America in the
Nov/Dec installment of the Post=91s Medical Mailbox. For those not
familiar with CFIDS, it=92s important to understand that this kind of
fatigue isn=92t merely feeling tired after a busy day or a lousy night
of sleep. It=92s severe, all-encompassing, and often accompanied by
persistent problems with memory, joint pain, and feeling sick after
exertion (see =93Quick Guide to CFS=94 after the interview below). But the
chronic disease has a misleading name, an unclear cause, and symptoms
you can=92t see. In this web-exclusive report, we continue our
conversation with Vernon about the challenges surrounding chronic
fatigue syndrome and the =93tremendous urgency=94 of researchers to better
understand, diagnosis, cure, and even prevent the distressing and
persistent problem.
Post: Is CFS a =93real=94 disease?
Vernon: There are more than 4,500 papers in the medical literature
that describe disturbed or altered biology in people with CFS, so,
yes, the disease is very real. The U.S. Centers for Disease Control &
Prevention estimates that at least one million American men, women,
and children have CFS. But its devastating effects are sometimes hard
to see; people with CFS can look relatively well, especially to those
who see them only on a relatively =93good=94 day. Confusion also stems
from the possibility that the disease may have several causes, and the
fact that it has been described by different names at different times,
such as post-viral fatigue syndrome, myalgic encephalomyelitis (ME),
chronic fatigue and immune dysfunction syndrome (CFIDS), and ME/CFS.
Post: Is there a specific test or symptom that signals CFS?
Vernon: None have yet been identified, and CFS remains a diagnosis of
exclusion. This means doctors diagnose CFS by ruling out other medical
and psychiatric diseases that could explain a patient=92s symptoms. The
medical definition of CFS crafted in the late 1980s is woefully
nonspecific. Today, we are addressing the need for better diagnostics
and treatment through strategically guided research based on knowledge
gained over the past 25 years of CFS research and from other areas of
science and medicine.
Post: Are researchers making strides in finding the cause or causes of
the disease?
Vernon: There is a great deal of published evidence that acute
infection with a variety of different pathogens can lead to CFS in
about 10 percent of the cases. So, infection is a plausible cause,
possibly in combination with an underlying immune system
vulnerability. Understanding who is at greatest risk for severe
infection, detecting these infections early, and learning more about
the immune response are important approaches to preventing CFS in the
future.
Keep in mind that we don=92t know the cause of most chronic diseases,
yet progress is possible. For example, the =93War on Cancer=94 signed into
law by President Richard Nixon in 1971 was aimed at improving cancer
treatment and finding cures by increasing research. Indeed, there has
been important progress, especially in cancer screening and treatment,
even though we still don=92t know the cause of most cancers.
Likewise, important findings from more than two decades of CFS
research gives me hope that effective treatments will be identified.
Currently the handful of physicians in the U.S. who have dedicated
their medical careers to caring for CFS patients use a combination of
treatment strategies to help patients improve function and quality of
life. It requires a partnership and a trial-and-error approach that
can be time-consuming and frustrating to both patient and physician.
In the future, chemical biomarkers identified by CFIDS
Association-funded researchers could help guide treatment using more
objective and targeted approaches.
Post: What are biomarkers?
Vernon: Biomarkers can be thought of as indicators not only of
disease, but also of response to treatment or even good health. Think
of cholesterol, for example. Cholesterol is vital for life, but high
levels of bad cholesterol are a biomarker indicating increased risk of
cardiovascular illnesses. Biomarker research has found certain
molecules on blood cells that occur at different levels in CFS
patients compared to healthy people and people with other diagnoses.
Other studies on CFS biomarkers may help identify characteristics of
people who do not recover from an acute infection and why that might
happen. In addition, we are finding that differences between CFS
patients and other groups often show up more clearly when the subjects
are studied after a short exercise challenge. Post-exertional relapse
is one of the hallmarks of CFS, and it seems to provoke a different
biological response than testing patients at rest.
Post: What do people struggling with CFS need to know?
Vernon: There is hope. Right now, awareness about and interest in CFS
are at an all-time high and there is tremendous urgency within the
scientific community to address the need for better diagnostics and
treatment through strategically guided research based on knowledge
gained over the past 25 years of CFS research and from other areas of
science and medicine. While some research is not panning out, other
areas are heating up. There are new technologies such as genomics,
proteomics, and imaging that give us new tools to understand
biological abnormalities at the molecular, cellular, and clinical
level. The CFIDS Association is laser-focused on making CFS widely
understood, diagnosable, treatable, and preventable, and we are making
faster progress than ever before.
Quick Guide to Chronic Fatigue Syndrome (CFS)
* People of every age have CFS, but the illness is most common in
those ages 40 to 59.
* More than 80 percent of CFS patients in the U.S. don=92t know they have i=
t.
* CFS includes four or more of the following characteristics (in
addition to fatigue): symptoms that relapse after physical or mental
exertion; unrefreshing sleep; substantial memory or concentration
problems; muscle pain; pain in multiple joints; headaches of a new
type, pattern, or severity; sore throat; and tender neck or armpit
lymph nodes.
* CFS is not caused by depression, although the two illnesses often
coexist. Many patients with CFS don=92t have any psychiatric disorder.
=96CFIDS Association of America
RESOURCES: www.cfids.org
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