Chronic Fatigue Syndrome, NIAID Fact Sheet: NIAID
Article title: Chronic Fatigue Syndrome, NIAID Fact Sheet: NIAID
Conditions: Chronic Fatigue Syndrome
Source: NIAID
January 2001
Chronic Fatigue Syndrome
What is Chronic Fatigue Syndrome?
We all get tired. Many of
us at times have felt depressed. But the mystery known as chronic
fatigue syndrome (CFS) is not like the normal ups and downs we
experience in everyday life. The early sign of this illness is a
strong and noticeable fatigue that comes on suddenly and often comes
and goes or never stops. You feel too tired to do normal activities
or are easily exhausted with no apparent reason. Unlike the mind fog
of a serious hangover, to which researchers have compared CFS, the
profound weakness of CFS does not go away with a few good nights of
sleep. Instead, it slyly steals your energy and vigor over months
and sometimes years.
How CFS Begins and Its Symptoms
For many people, CFS begins
after a bout with a cold, bronchitis, hepatitis, or an intestinal
bug. For some, it follows a bout of infectious mononucleosis, or
mono, which temporarily saps the energy of many teenagers and young
adults. Often, people say that their illnesses started during a
period of high stress. In others, CFS develops more gradually, with
no clear illness or other event starting it.
Unlike flu
symptoms, which usually go away in a few days or weeks, CFS symptoms
either hang on or come and go frequently for more than six months.
CFS symptoms include:
- Headache
- Tender lymph nodes
- Fatigue and weakness
- Muscle and joint aches
- Inability to concentrate
Who Gets CFS?
CFS was once stereotyped as a new "yuppie flu"
because those who sought help for and caused scientific interest in
CFS in the early 1980s were mainly well-educated, well-off women in
their thirties and forties. Similar illnesses, known by different
names, however, date back at least to the late 1800s. The modern
stereotype arose. Since then, doctors have seen the syndrome in
people of all ages, races, and social and economic classes from
several countries around the world.
Still, CFS is diagnosed
two to four times more often in women than in men, possibly because
of biological, psychological, and social influences. For example,
- CFS may have a gender difference similar to diseases such as
systemic lupus erythematosus and multiple sclerosis, which affect
more women than men.
- Women may be more likely than men to talk with their doctors
about CFS-like symptoms.
- Some members of the medical community and the public do not
know about or are skeptical of the syndrome.
- An increasingly diverse patient group will likely emerge as
more doctors see CFS as a real disorder.
How Many People Have It?
Because there is no specific
laboratory test or clinical sign for CFS, no one knows how many
people this illness affects. CDC estimates, however, that as many as
500,000 people in the United States have a CFS-like condition.
What Causes CFS?
While no one knows what causes CFS, for
more than a century, doctors have reported seeing illnesses similar
to it. In the l860s, Dr. George Beard named the syndrome
neurasthenia because he thought it was a nervous disorder with
weakness and fatigue. Since then, health experts have suggested
other explanations for this baffling illness.
- Iron-poor blood (anemia)
- Low blood sugar (hypoglycemia)
- Environmental allergy
- A body wide yeast infection (candidiasis)
In the
mid-1980s, the illness became labeled "chronic EBV" when laboratory
clues led scientists to wonder whether the Epstein-Barr virus (EBV)
might be causing this group of symptoms. New evidence soon cast
doubt on the theory that EBV could be the only thing causing CFS.
High levels of EBV antibodies (disease-fighting proteins) have now
been found in some healthy people as well as in some people with
CFS. Likewise, some people who don’t have EBV antibodies, and who
thus have never been infected with the virus, can show CFS symptoms.
How is CFS Diagnosed?
Doctors find it difficult to diagnose
CFS because it has the same symptoms as many other diseases. When
talking with and examining you, your doctor must first rule out
diseases that look similar, such as multiple sclerosis and systemic
lupus erythematosus in which symptoms can take years to develop. In
follow-up visits, you and your doctor need to be alert to any new
cues or symptoms that might show that the problem is something other
than CFS.
When other diseases are ruled out and if your
illness meets other criteria as well, your doctor can diagnose you
with CFS (see
The CFS Case Definition).
The CFS Case Definition
The EBV work sparked new interest in
the syndrome among a small group of medical researchers. They
realized they needed a standard way to describe CFS so that they
could more easily compare research results.
In the late
1980s, CDC brought together a group of CFS experts to tackle this
problem. Based on the best information available at the time, this
group published in the March 1988 issue of the scientific journal,
Annals of Internal Medicine, strict symptom and physical
criteria -- the first case definition -- by which scientists could
evaluate CFS study patients.
Not knowing the cause or a
specific sign for the disease, the group agreed to call the illness
"chronic fatigue syndrome" after its primary symptom. "Syndrome"
means a group of symptoms that occur together but can result from
different causes. (Today, CFS also is known as myalgic
encephalomyelitis, postviral fatigue syndrome, and chronic fatigue
and immune dysfunction syndrome.)
After using this
definition for several years, CFS researchers realized some criteria
were unclear or redundant. An international group of CFS experts
reviewed the criteria for CDC, which led to the first changes in the
case definition. This new definition was published in the same
journal in December 1994.
Besides revising the CFS case
criteria -- which reduced the required minimum number of symptoms to
four out of a list of eight possible symptoms -- the newer report
also proposed a conceptual outline for studying the syndrome. This
outline recognizes CFS as part of a range of illnesses that have
fatigue as a major symptom. Although primarily intended for
researchers, these guidelines should help doctors better diagnose
CFS.
How Can I Cope With and Manage the Illness?
There is no
effective treatment for CFS. Even though there is no specific
treatment for CFS itself, you may find it quite helpful to treat
your symptoms. Nonsteroidal anti-inflammatory drugs, such as
ibuprofen, may help get rid of any body aches or fever, and
nonsedating antihistamines may help relieve any prominent allergic
symptoms, such as runny nose.
Learning how to manage your
fatigue may help you improve the level at which you can function and
your quality of life despite your symptoms. A rehabilitation
medicine specialist can evaluate and teach you how to plan
activities to take advantage of times when you usually feel better.
The lack of any proven effective treatment can be
frustrating to both you and your doctors. If you have CFS, health
experts recommend that you try to maintain good health by:
- Eating a balanced diet and getting adequate rest
- Exercising regularly but without causing more fatigue
- Pacing yourself -- physically, emotionally, and intellectually
-- because too much stress can aggravate your symptoms.The course
of CFS varies from patient to patient
For most people, CFS
symptoms plateau early in the course of illness and thereafter wax
and wane. Some people get better completely, but it is not clear how
frequently this happens. Emotional support and counseling can help
you and your loved ones cope with the uncertain outlook and the ups
and downs of this illness.
New studies seem to show that
cognitive behavioral therapy and graduated exercise programs can
greatly help many. Others are helped by
antidepressants.
Because well-designed clinical studies have
found that patients with fibromyalgia (an illness similar to CFS)
benefit from low-dose tricyclic antidepressants, doctors often
prescribe these drugs for people with CFS with generally positive
results. Some researchers believe that these drugs improve the
quality of sleep. Patients also have benefited from other kinds of
antidepressants, including the newer serotonin reuptake inhibitors.
Therapeutic doses of antidepressants often increase fatigue in CFS,
so doctors may have to increase the dosage very slowly, or prescribe
more active antidepressants. In addition, some people with CFS
benefit from the benzodiazepines, a class of drugs used to treat
acute anxiety and sleep problems. Patients often try more than one
drug before finding one that works and can be tolerated.
Conclusion
CFS seems to involve interactions between the
immune and central nervous systems, interactions about which
scientists know relatively little. Scientists' concerted efforts to
penetrate the complex nervous system and immune system events in CFS
have created a challenging new concept of the pathology of this and
other illnesses.
For More Information About CFS
U.S. Department of
Health and Human Services (DHHS)DHHS CFS
Coordinating Committee
DHHS Fatigue Syndrome State of the Science Conference Summary
(October 2000) available at:
http://www4.od.nih.gov/cfs/finalmeeting.pdfMEDLINEplus
is the
National Library of Medicine Web site
designed to direct you to information resources that will help you
research your health questions. It includes a searchable database of
published medical literature called MEDLINE.
1-800-338-7657
http://www.nlm.nih.gov/medlineplus/Centers
for Disease Control and PreventionNational Center for
Infectious Diseases
Division of Viral and Rickettsial
Diseases
Atlanta, GA 30333
404-639-1388 or
1-888-232-3228
http://www.cdc.gov/ncidod/diseases/cfs
Disability Benefits
Clearinghouse on Disability
InformationOffice of Special Education and Rehab
Services
U.S. Department of Education
Room 3132, Switzer
Building
Washington, DC 20202
212-205-8241
U.S.
Social Security AdministrationCall your local social
security office or
1-800-772-1213 (7:00 am - 7:00 pm ET
weekdays)
http://www.ssa.gov/Social
Security pays disability benefits under two programs: the Social
Security Disability Insurance Program and the Supplemental Security
Income (SSI) Program. Medical requirements for disability payments
under both programs are the same. Eligibility for Social Security
disability is based on prior work history and SSI payments are made
on the basis of financial need.
National Organization
of Social Security Claimants Representatives(NOSSCR --
a lawyer referral source)
1-800-431-2804
Finding a Doctor
University-affiliated medical schools may
help in locating physicians who can evaluate symptoms or who can
provide an appropriate referral.
NOTE: The
following groups are listed solely for your information because of
their interest in chronic fatigue syndrome. This list does not
constitute an endorsement of the organizations or any of their
referrals, products, or services.
National CFS Patient Organizations
Chronic Fatigue
and Immune Dysfunction Syndrome Association of
AmericaP.O. Box 220398
Charlotte, NC
28222
1-800-442-3437
http://www.cfids.org/National
Chronic Fatigue Syndrome and Fibromyalgia
AssociationP.O. Box 18426
Kansas City, MO
64133
816-313-2000
Health Professional Organizations
American
Association for Chronic Fatigue Syndrome325 Ninth
Avenue
Box 359780
Seattle, WA 98104
206-781-3544
http://www.aacfs.org/The
objectives of AACFS are to promote, stimulate and coordinate the
exchange of ideas related to CFS research, patient care and
treatment, and to periodically review the current CFS clinical,
research, and treatment literature as well as information on CFS
released by the media, for the benefit of CFS patients and
interested scientists and clinicians. Clinicians as well as research
and health care workers professionally engaged in CFS activities may
apply for regular membership.
New Jersey Chronic
Fatigue Syndrome CenterDr. Benjamin
Natelson
University of Medicine and Dentistry
MSB H-506
185 S. Orange Avenue, University Heights
Newark, NJ
07103-2714
973-972-5864
The
goals of the New Jersey CFS Center are to provide a
multidisciplinary approach to the evaluation, diagnosis and
treatment of persons with CFS; to perform research geared towards
finding the underlying causes of CFS and the effective treatment of
the debilitating symptoms associated with the illness; and to
educate patients, families, health care professionals and the
general public concerning research, treatment practices and coping
mechanisms.
NIAID is a component of the National Institutes of Health
(NIH). NIAID supports basic and applied research to prevent,
diagnose, and treat infectious and immune-mediated illnesses,
including HIV/AIDS and other sexually transmitted diseases,
tuberculosis, malaria, autoimmune disorders, asthma and allergies.
Prepared by:
Office of Communications and Public
Liaison
National Institute of Allergy and Infectious
Diseases
National Institutes of Health
Bethesda, MD 20892
Public Health Service
U.S. Department of Health and Human
Services
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