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CFS/ME INFORMATION
CFS stands for chronic fatigue syndrome. Chronic means persistent or long-term.
ME stands for Myalgic: my-AL-jik Encephalomyelitis:
en-SEF-uh-lo-MY-uh-LY-tis.
Myalgic means 'muscle aches or pains'. Encephalomyelitis means inflammation of the brain
and spinal cord. CFS/ME is a serious, disabling and chronic neurological illness
affecting approximately 1 million people in the United States and as many as 17 million
people worldwide.
CFS/ME is characterized by:
- debilitating fatigue (exhaustion and extremely poor stamina)
- neurological problems
- and a variety of flu-like symptoms
The illness is also known as chronic fatigue immune dysfunction syndrome (CFIDS), In the
past the syndrome has been known as chronic Epstein-Barr virus (CEBV).
The core symptoms include:
- excessive fatigue
- general pain
- mental fogginess
- often gastro-intestinal problems
Many other symptoms will also be present, however they will typically be different among
different patients. These include:
- fatigue following stressful activities
- headaches
- sore throat
- sleep disorder
- abnormal temperature
- and others
The degree of severity can differ widely among patients, and will also vary over time
for the same patient. Severity can vary between getting unusually fatigued following
stressful events, to being totally bedridden and completely disabled. The symptoms will
tend to wax and wane over time. This variation, in addition to the fact that the cause of
the disease is not yet known, makes this illness difficult to diagnose.
In some cases, CFS/ME can persist for years. The cause or causes of CFS/ME have not
been identified and no specific diagnostic tests are available. Moreover, since
many illnesses have incapacitating fatigue as a symptom, care must be taken to
exclude other known and often treatable conditions before a diagnosis of CFS/ME is made.
Genetic Link
William Reeves, M.D., director of CFS research at the CDC said, "For the first time
ever, we have documented that people with CFS have (variations in)
certain genes that are related to those parts of brain activity that mediate the stress
response."
Also, people with the syndrome have differences in genetic activity levels that affect
the way they respond to stress accumulated over a lifetime, Dr. Reeves said in a media
telebriefing to announce 14 research papers arising from a CDC study in Wichita, Kan.
The findings could lead to better diagnostic tools for the syndrome, which is often
regarded as ill-defined, and to better treatments, including both cognitive and
behavioral therapies and new drugs, Dr. Reeves said.
The papers, published in the April 20, 2006 issue of the journal Pharmacogenomics,
were described as "groundbreaking" by Dr. Reeves, but were not made available to
reporters by the CDC.
The research "is really the first credible evidence of the biological basis for chronic
fatigue syndrome," said CDC director Julie Gerberding. "It reflects a remarkable
confluence of a number of scientific advances," she added.
The flurry of research papers arose from a longitudinal population-based study in
Wichita, from 1997 to 2000. That study found 70 people classified as having CFS, and in
2002 and 2003, they were invited to take part in exhaustive two-day clinical and genetic
evaluations.
The researchers also included 55 matched controls for the 58 CFS patients who agreed to
take part, as well as 59 people with fatigue symptoms who did not meet the full CFS
criteria (dubbed ISF). Also, they included 55 people with either ISF or CFS and
concurrent melancholic depression.
The data gathered from the 227 participants, at a cost of about $2 million, included a
full clinical evaluation, electrophysiologic measurements of sleep physiology, cognitive
function, autonomic nervous system function, and detailed blood work that included DNA
and gene activity analysis, Dr. Reeves said.
The next step was to share the data with four teams of researchers, which each took a
different approach to the analysis, said molecular epidemiologist Suzanne Vernon, Ph.D.,
of the CDC's CFS Research Laboratory.
For the genetic analysis, she said, "we took a pathway-specific approach. We targeted
about 50 genes and 500 polymorphisms in genes that are active in the
hypothalamus-pituitary-adrenal (HPA) axis."
It turned out that all four groups zeroed in on five single nucleotide polymorphisms
(SNPs) in three genes - those coding for the glucocorticoid receptor, for serotonin,
and for tryptophan hydroxylase - which, she said, "are very important in the function
of the HPA, which is the body's stress response system."
The effect of the variations, Dr. Reeves said, appears to be that people with them are
less able to cope with stress.
One of the research groups, he said, identified three distinct fatigued groups - those
with extreme fatigue, those with symptoms such as heart-rate variability and cortisol
disturbances, and a group that was primarily menopausal women.
"The genes that Dr. Vernon mentioned distinguished the three fatigue groups from those
that were not fatigued and two of those genes distinguished between the fatigue groups,"
Dr. Reeves said.
A study such as the one in Wichita produces enormous amounts of data, which must be
reconciled if useful conclusions are to be drawn, said Jan Witkowski, Ph.D., director of
the Banbury Center at the Cold Spring Harbor (N.Y.) Laboratory. The 14 research papers
"are a heroic attempt to do so," he said in an accompanying editorial.
But while the amounts of data are large, Dr. Witkowski added, other disciplines have
overcome greater challenges and "there is every reason to believe that continuing
technical and intellectual advances" will help clarify the basis of diseases such as CFS.
What To Call It
Although there is agreement on the genuine threat to health, happiness, and productivity
posed by CFS/ME, various physicians' groups, researchers, and patient activists champion
very different ideas regarding diagnostic criteria and favored treatments, resulting
in ongoing controversy about nearly all aspects of the disorder. The name chronic
fatigue syndrome is itself controversial, with some patient advocates and other
authorities preferring terms such as myalgic encephalomyelitis ("ME" or "CFS/ME")
and post-viral fatigue syndrome ("PVFS"), which imply specific underlying
etiologies or pathologic processes.
Yes, CFS/ME is Real
A lack of information and awareness has led to many patients being stigmatized
as hypochondriac or lazy. The Centers for Disease Control & Prevention have now
recognized CFS/ME as a serious illness and have recently launched a
campaign to raise public and medical awareness about it. The
American Medical Association (AMA), the World Health Organization (WHO), and the National
Institutes of Health (NIH) are among those who have accepted CFS/ME as a legitimate
physical illness and a major cause of disability.
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