Tuesday, December 8, 2015

We're Making Progress


June 15, 2015

News About Chronic Fatigue Syndrome: We're Making Progress
Diane E. Judge, APN/CNP

Dispelling the myth that CFS is "all in your head"

Chronic fatigue syndrome (CFS) is a devastating illness that can
interfere with all facets of life. It's not clear how many people
suffer from CFS, but a recent estimate suggests the number is between
836,000 and 2.5 million in the U.S. According to the Centers for
Disease Control and Prevention (CDC), women are two to four times as
likely as men to get a diagnosis of this condition. You might also see
CFS called by an older name, myalgic encephalomyelitis (ME), or a
combination of the two names (ME/CFS).

Yes, It's "Real"

When we first began hearing about CFS decades ago, many clinicians
(doctors, nurse practitioners, physician assistants), and even friends
and relatives of people with CFS questioned whether it was a "real
disease" or "just a mental health condition" or a "figment of the
imagination." They had a hard time believing that a condition that
couldn't be diagnosed with a blood test, x-ray, or physical
examination could be real. Diagnosis depended (and still depends)
solely on what the patient reports.

Recently the Institute of Medicine (IOM) and the National Institutes
of Health took a strong stand on CFS. Based on more than 9000 research studies, these organizations concluded that CFS has a biological basis (occurs because of one or more body malfunctions), declaring it "a serious, chronic, complex systemic disease that can profoundly affect the lives of patients." They also stated that CFS is not "a psychological problem."

The studies identified many differences between people with CFS and
healthy people or those with other conditions that cause severe
fatigue (such as depression or multiple sclerosis). Differences were
identified in the brain and nervous system, the immune system (which
defends the body against infection), and the endocrine system (which
regulates body function through glands and hormones). The IOM also
noted that CFS sometimes occurs following infection with the
Epstein-Barr virus and possibly infections with other viruses,
bacteria, and protozoa. Learning more about these factors may help
researcher develop tests for diagnosing CFS, as well as medications
and other approaches for treating it.

Diagnosing CFS

A diagnosis of CFS still relies on the patient's description of
symptoms. CFS is identified when what you are experiencing matches
guidelines developed in 1994. According to those guidelines, you have
CFS if, for 6 months, you have had severe, constant, unexplained
fatigue that interferes significantly with daily activities and work,
and four or more additional symptoms from a list of eight that
includes unrefreshing sleep (awakening as tired as you were when you
went to bed) and fatigue made worse by exertion.

The IOM proposed a simpler definition for identifying people with CFS,
which may become the new standard. If you fit the criteria listed
below, if no other cause can be found, and if the problems are
moderate, substantial, or severe and happen frequently (at least half
the time), the likely diagnosis is CFS:

- A substantial loss of ability to engage in preillness levels of
work-related, educational, social, or personal activities that
persists for more than 6 months and is accompanied by fatigue, which
is often profound, is of new or definite onset (not lifelong), is not
the result of ongoing excessive exertion, and is not substantially
relieved by rest
- Postexertional malaise (worsening of symptoms after physical,
cognitive, or emotional activity)
- Unrefreshing sleep, PLUS one or both of the following:
   - Cognitive impairment (trouble remembering, learning new things,
concentrating, or making decisions)
   - Orthostatic intolerance (changes in heart rate and blood
pressure, often resulting in feeling dizzy or lightheaded when
standing; improving when lying down)

Treating CFS

No specific medication or other treatment can reliably relieve or cure CFS — but since CFS affects lives to such an extent, doing nothing is not acceptable. Treatment is aimed at easing at least some of the
symptoms. For instance, a very low dose of a medication called a
"tricyclic" may allow you to get more hours of deep, restorative sleep
at night, resulting in more energy the following day.
Graded exercise
therapy (supervised physical activity starting at a low level and
increasing gradually) may improve fatigue and function, although it
doesn't help everyone and sometimes causes problems. Counseling,
including cognitive behavioral therapy (CBT), may also help. CBT is a
therapist-guided method of changing your thinking and fears about your
health situation, which may make CFS easier to live with.

The lack of treatment options may make complementary and alternative
treatments, such as acupuncture, massage, and herbal and botanical
products, seem attractive. There is little research proving that these
approaches are safe and helpful, but some women report relief with
them. If you choose to try these options, find out about any possible
negative effects. Advertising might claim that herbal and botanical
remedies will help you, but the quality, safety, and content of these
products is not regulated by the U.S. Food and Drug Administration. If
you are considering such a product, check it out at National Center
for Complementary and Integrative Health (see Resources below). And be
sure to let your clinician know.

You may also want to consider participating in a research program
investigating possible treatments for CFS. Places to look for such
programs include hospitals associated with universities, or the CDC
and support groups such as Solve ME/CFS Initiative (see Resources

Coming Soon: A New Name for CFS?

Some experts believe that the term "chronic fatigue syndrome" makes
light of an illness that so profoundly interferes with peoples' lives.
Because CFS is a systemic (affecting the whole body) illness marked by
exertional intolerance, the IOM proposed a new name that acknowledges
the true problem: "systemic exertional intolerance disease." That name
has not yet been formally adopted, but you may see it used in the

In Conclusion

There is still no cure, or even any reliably effective treatment, for
CFS. But the IOM report should dispel the myth that CFS is "all in
your head." With more research, more clinician education, and more
support for those who have CFS, this illness should receive the
validation and attention it deserves.


Solve ME/CFS Initiative

Centers for Disease Control and Prevention

National Center for Complementary and Integrative Health

Institute of Medicine, Beyond Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome: Redefining an Illness

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