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VERY INFORMATIVE CHRONIC FATIGUE SYNDROME INFORMATION
Fact Sheet
The CFIDS Association of America Chronic Fatigue Syndrome (CFS) Fact Sheet
CFS is recognized by the National
Institute of Health (NIH), Centers for Disease Control (CDC), Food and Drug Administration (FDA) and Social Security Administration
(SSA) as a serious, often disabling illness. It is marked by unrelenting exhaustion, muscle pain, cognitive disorders that
patients call "brain fog," and a myriad of other physical symptoms.
Some patients are bedridden; others
consider themselves fortunate if they can work or attend school at least part time, since any exertion typically worsens their
symptoms. Many are denied disability insurance benefits because doctors and employers believe they are lazy or have a mental
illness rather than a serious physical condition.
Research is being done on many fronts, from cardiology to immunology
to endocrinology, but the disease remains a mystery. Even the most promising treatments seem to work only for some patients
and improve their lives by only small degrees. Following are some facts that are known about CFS.
PREVALENCE:
A new study by DePaul University estimates CFS at approximately 422 per 100,000 persons in the U.S. This means as many
as 800,000 people nationwide suffer from the condition. Research has shown that CFS is about three times as common in women
(522/100,000) as men, a rate similar to that of many autoimmune diseases, such as multiple sclerosis and lupus. To put this
into perspective, CFS is over four times more common than HIV infection in women (125/100,000), and is considerably higher
than a woman's lifetime risk of getting lung cancer (63/100,000).
90% of patients have not been diagnosed and are
not receiving proper medical care for their illness.
Few studies of CFS in children and adolescents have been published.
It is well-accepted that adolescents get CFS, although less frequently than adults.
CFS has been shown to affect
persons of all races, ages and socioeconomic groups.
SYMPTOMS: Fatigue, substantial impairment of short-term
memory or concentration, sore throat, tender lymph nodes, muscle and joint pain, headaches, unrefreshing sleep, and fatigue
lasting more than 24 hours following exertion.
CFS is diagnosed when these symptoms persist for more than six months
and cannot be explained by any other medical or psychological condition.
Many veterans of the Persian Gulf war
have a symptom complex that has been determined by scientists to be virtually identical to CFS.
RECOVERY: The
clinical course of CFS varies widely. Some patients recover to the point that they can resume work and other activities, even
though they continue to experience symptoms.
According to the CDC, the probability of significant improvement in
CFS patients was 31.4% during the first five years of illness and 48.1% during the first 10 years. However even recovered
patients stated that they continued to have some CFS-defining symptoms (Journal of Chronic Fatigue Syndrome, 1999: 5 (1) 17-27).
TREATMENT: Treatment of CFS is aimed at symptom relief. No single therapy exists to help all patients with
CFS.
Only one drug, Ampligen, is nearing the end of the FDA's approval process. More than 100 patients are receiving
Ampligen either by paying for it themselves or through enrollment in an FDA-required randomized study of the drug.
THE CAUSE: Despite an intensive decade-long search, the cause of CFS remains unknown. Many different viruses, bacterium,
toxins and psychological causes have been considered and rejected, but the search continues.
Genetic and environmental
factors may play a role in developing and/or prolonging the illness, although increased research is needed.
THE
NAME: The name Chronic Fatigue Syndrome was coined in 1988 by a group of scientists.
The Department of Health
and Human Services Chronic Fatigue Syndrome Coordinating Committee (CFSCC), which is composed of representatives from the
patient advocacy and medical communities as well as federal agencies conducting research, is addressing the need to change
the name.
The name chronic fatigue syndrome is believed by most patients and researchers to be unacceptable, as
it focuses too heavily on only one easily misunderstood symptom of the illness. Thirty years ago or more, multiple sclerosis
patients were subject to this type of stigma -- people then called MS "hysterical paralysis."
CFS is
also known as chronic fatigue and immune dysfunction syndrome (CFIDS), myalgic encephalomyelitis (M.E.) and by many other
names.
GOVERNMENT RESPONSE: Ever since CFS was recognized as a public health concern in the mid-1980s, Congress
has urged federal health agencies to allocate increasing resources to the investigation of CFS. Although the true amount of
spending is in question, the major public health agencies have reported to Congress a 400% increase in CFS spending over the
last six years.
SSA has issued new guidelines for determining disability benefits for persons with CFS. This recognition
of CFS as a potentially medically determinable impairment is a major step forward for those patients who can no longer work
as a result of the illness.
In May 1999, the Inspector General of the U.S. Department of Health and Human Services
released a report finding that the CDC had diverted research funds meant for CFS and then attempted to cover up the diversion.
The patient community has called for the funds to be returned and research and education campaigns restored. The Associations
inquiries into federal CFS spending began in 1992.
ABOUT OUR ORGANIZATION: The CFIDS Association of America
is the leading organization dedicated to conquering CFS and related disorders. Since 1987, the Association has invested over
$3.3 million in CFS research.
The Associations publication, The CFIDS Chronicle, is the worlds most authoritative
and widely read source of information about CFS.
------------------------------------------------------------ For
further information: Individuals who want to know more about CFS can call The CFIDS Association of America's toll-free
number 24-hours a day (800/442-3437) or visit our web site at www.cfids.org. ---------------------------------- The
CFIDS Association of America Advocacy, Information, Research and Encouragement for the CFIDS Community
PO
Box 220398 Charlotte NC 28222-0398 Toll-free Info Line: 800/442-3437 Resource Line: 704/365-2343 Fax:
704/365-9755 General e-mail: info@cfids.org The CFIDS Association of America, Inc. If you have comments about
this website please contact webmaster@cfids.org
ADDED JANUARY 5, 2003
CFS - THE THIEF OF MANY LIVES
I would encourage you and your CFS group to make copies and include it in ALL out going snail mail (bills, holiday
cards, etc.) which will spread the word about this illness at no additional cost to the sufferer.
Feel
free to distribute in entirety and fully intact including my email address.
I am constantly on the prowl in
search of new victims. I do not discriminate---health care workers, teachers, students, airline personnel, teens, moms,
dads, and innocent children are my prey. If you are dynamic and have a lust for life, I will seek you out, and I will
find you.
Just when you are at the peak of your endeavors, climbing that career ladder or building your family and
home, I will find you. There is nothing that you have in your life today that I am not capable of destroying tomorrow,
your career, your education, your goals, your dreams, your family, and your life. I will have it all. I will strip you
of your ability to function at any level above minimal, and from this day on you will refer to that minimal as a "good
day."
I have the ability to create an invalid out of you overnight, and I will. It will take a marathon effort for
you just to get out of bed. At a cellular level your immune system will be in a constant war battling itself and unnamed
viruses, which will painfully be replicating in your brain. I promise you, I will bring you despair along with pain, isolation
and losses far beyond what you can ever imagine. Your mind will be in a constant "fogged" state, your expression will
be unable to express, and your eyes will have a noticeable "glazed over/drugged out" look. You will find it most difficult
to pay attention, concentrate, or even process the simplest of thoughts. Making change from a dollar may well be beyond
your ability now. Your mouth may feel like it is full of marbles when you try to speak, as your tongue twists and nothing
you try to say comes out right. Who would believe your level of education when you can't even string enough words together
to make a complete sentence ... or one that makes any sense for that matter. I promise, I will bring you at any unsuspecting
time, severe abdominal pain, nausea, vomiting and diarrhea along with a host of gastrointestinal disorders. I will make
you weak and lifeless as one could be without being confirmed dead. You will be housebound or in bed for several years
if not the rest of your life. As part of incapacitating you, I will make your heart race and your head pound; your
throat will constantly be sore and your lymph glands will swell. That will all seem trivial after I inflame and spasm
muscles throughout your body. Crushing a grape between your fingers may take too much energy or be too painful now.
On
those nights that I allow you to sleep, you will awaken drenched with sweat or throbbing with pain. Perhaps I might even
throw in a little seizure activity. On those nights that I do not allow sleep to occur; I will torture you with thoughts
of death.... Not suicide, but death. Simply because you have not come to realize that this is your new life, and that
you are not living. You will need to re-create your being every day, as every day I will bring you unpredicted symptoms
and suffering.
I have also done a few things that you may not be aware of yet. I placed some lesions on your brain
(have you noticed how you have difficulty with balance and memory yet?) and I have permanently altered your immune system. I
have shorted out your nervous system so that you have intermittent numbness and tingling, which might resemble an electrical
current zapping you from time to time. This is called neuropathy. Nope, it's not curable either!
Now I have
you. I have taken over your body and mind. I have stolen your life but left you alive, not very functional, but by clinical
definition you are still alive.
Your family will not be able to give you all the constant care that you need
on a daily basis. As for your friends, well, they're still on that ladder climbing up. Rest assured, I am looking for them
too. By now, chances are good that most of your family and friends have abandoned you, so you must have learned the
definition of isolation. This newfound isolation will save you from having to explain how sick you really are to others,
they won't understand anyway. Isolation will save you all that energy. Your health insurance has already been or will
shortly be discontinued as you lost your job from not being able to "keep up." Perhaps you got caught dozing off or
called in sick one too many times. Now that you are no longer employable or insurable, when you seek medical care,
any medical professional that figures me out will diagnose you and say that what you have is presently not curable.
Now
it is time for you to seek out medical care, nation if not worldwide. However, most so called medical professionals will
not even have the ability to recognize me when they see me, as they have not learned about me in medical school. So,
chances are good that you will be misdiagnosed. You will give more blood samples and have more examinations than you
ever imagined existed. Then you can take the results to dozens of doctors in search of a diagnosis. One that is valid
as well as socially and medically acceptable. One that does not label you as depressed or say that "it is all in your
head!!!" Most doctors will suggest a vacation, weight loss diet, new or increased love life, help with the children, or
change of scenery as the "cure," mainly because you may look like the picture of health. This is my mask of
deception.
You will pray for a positive word from current research. Research, which you will soon learn, is quite
limited due to lack of funding and government support. You will learn new vocabulary which contains words like: T-Cells, Cytokines,
Nuclear Antigens, Natural Killer Cells, Immunoglobulins, Cytomegalovirus, Seratonin, Cerebral lesions, and Immune Dysfunction
are among a few. However the most important words that you will need to know and fight for are Social Security Disability
and Medicare.
At one point I may give you a false sense of recovery or remission. Let me assure you, I will be
back, as you are my prisoner and that makes me your keeper. I have placed the lives of millions of people nationwide in
limbo, I continue to do the same world wide. I would consider this an epidemic, wouldn't you?
Eventually I
will bring the government, health care workers, and society to its knees in search of unraveling my complexities, which
are crippling humanity. I leave it up to you, my victims, and your caretakers, to educate the public and let them know
that I am very real and that you are very sick. Unfortunately, I have been given a totally ridiculous name, which
will make your job even more difficult. Until that name is changed, I am. CHRONIC FATIGUE AND IMMUNE DYSFUNCTION SYNDROME
About
the author: Kathleen Houghton is a 47 year old woman who has battled CFS, FM and MCS for more than a dozen years. Pre-illness,
Kathleen worked as a pediatric special care nurse caring for infants and children on life support. Kathleen, now mostly
homebound, works in conjunction with other national & international health organizations, researchers and medical
professionals providing information, education and awareness about Chronic Fatigue Syndrome, Environmental Illness
& Multiple Chemical Sensitivity.
Kathleen Houghton also assists businesses, schools and hospitals in implementing
No Fragrance Policies in the work place. cfs-mcs@gci.net
The CFIDS Association of America This is an award winning website!
Understanding CFIDS
Efforts
to expand education and research have enhanced understanding of chronic fatigue and immune dysfunction syndrome (CFIDS). This
brochure answers common questions about this neurological and immunological illness, also known as chronic fatigue syndrome
(CFS).
The following questions are answered below:
What is CFIDS? How is CFIDS diagnosed? What
are other common symptoms? How is CFIDS treated? How many people have CFIDS? Who gets CFIDS? Do persons
with CFIDS get better over time? What causes CFIDS? Are viruses involved in CFIDS? Is it contagious? What
precautions should PWCs take? Should PWCs receive flu shots or other immunizations? Is exercise helpful or harmful?
Is weight gain common? Is depression common? What role does stress play in this illness? How does pregnancy
affect CFIDS? Is CFIDS related to other illnesses? Why is this disease called CFS or CFIDS? What is being
done to conquer CFIDS? For further reading ------------------------------------------------------------
What
is CFIDS? Chronic fatigue and immune dysfunction syndrome (CFIDS) is a serious and complex illness that affects many different
body systems. It is characterized by incapacitating fatigue (experienced as profound exhaustion and extremely poor stamina),
neurological problems and numerous other symptoms. CFIDS can be severely debilitating and can last for many years. CFIDS is
often misdiagnosed because it is frequently unrecognized and can resemble other disorders including mononucleosis, multiple
sclerosis (M.S.), fibromyalgia (FM), Lyme disease, post-polio syndrome and autoimmune diseases such as lupus. CFIDS is also
known as chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (M.E.).
How is CFIDS diagnosed? Despite
a decade of research, there is still no definitive diagnostic test for CFIDS.
A research and clinical definition
for CFIDS was developed by an international group of researchers led by scientists at the Centers for Disease Control &
Prevention (CDC). This case definition was published in the December 15, 1994 issue of the Annals of Internal Medicine.
Diagnosing CFIDS requires a thorough medical history, physical and mental status examinations and laboratory tests to
identify underlying or contributing conditions that require treatment. Clinically evaluated, unexplained chronic fatigue cases
can be classified as chronic fatigue syndrome if the patient meets both the following criteria:
1. Clinically evaluated,
unexplained persistent or relapsing chronic fatigue that is of new or definite onset (i.e., not lifelong), is not the result
of ongoing exertion, is not substantially alleviated by rest and results in substantial reduction in previous levels of occupational,
educational, social or personal activities.
2. The concurrent occurrence of four or more of the following symptoms:
substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain
without joint swelling or redness; headaches of a new type, pattern or severity; unrefreshing sleep; and post-exertional malaise
lasting more than 24 hours. These symptoms must have persisted or recurred during six or more consecutive months of illness
and must not have pre-dated the fatigue.
The case definition describes several medical conditions which, when present,
exclude a patient from a diagnosis of CFS. Among these conditions is a past or current diagnosis of a major depressive disorder
with psychotic or melancholic features. This type of primary depressive disorder is not to be confused with the secondary
depression that often accompanies CFIDS. (See below for additional information on CFIDS and depression.)
What are
other common symptoms? Persons with CFIDS (PWCs) have symptoms which vary from person to person and fluctuate in severity.
Specific symptoms may come and go, complicating treatment and the PWC's ability to cope with the illness. Most symptoms are
invisible, which makes it difficult for others to understand the vast array of debilitating symptoms that PWCs have.
The eight primary symptoms described in the CDC's case definition are listed above. Other symptoms common to CFIDS are
listed below (please note that most PWCs do not have all these symptoms and that they are not required for diagnosis). PWCs
have cognitive problems in addition to difficulties with concentration and short-term memory (such as word-finding difficulties,
inability to comprehend/retain what is read, inability to calculate numbers and impairment of speech and/or reasoning). They
also have visual disturbances (blurring, sensitivity to light, eye pain, need for frequent prescription changes); psychological
problems (depression, irritability, anxiety, panic attacks, personality changes, mood swings); chills and night sweats; shortness
of breath; dizziness and balance problems; sensitivity to heat and/or cold; alcohol intolerance; irregular heartbeat; irritable
bowel (abdominal pain, diarrhea, constipation, intestinal as); low-grade fever or low body temperature; numbness, tingling
and/or burning sensations in the face or extremities; dryness of the mouth and eyes (sicca syndrome); menstrual problems including
PMS and endometriosis; chest pains; rashes; ringing in the ears (tinnitus); allergies and sensitivities to noise/sound, odors,
chemicals and medications; weight changes without changes in diet; light-headedness; feeling in a fog; fainting; muscle twitching;
and seizures.
How is CFIDS treated? Treatment for CFIDS is intended primarily to relieve specific symptoms.
Treatment must be carefully tailored to meet the needs of each patient. Sleep disorders, pain, gastrointestinal difficulties,
allergies and depression are some of the symptoms which physicians commonly attempt to relieve through the use of prescription
and over-the-counter medications. Persons with this illness may have unusual responses to medications, so extremely low dosages
should be tried first and gradually increased as appropriate.
Lifestyle changes, including increased rest, reduced
stress, dietary restrictions, nutritional supplementation and minimal exercise also are frequently recommended. Supportive
therapy, such as counseling, can also help to identify and develop effective coping strategies.
Researchers and
clinicians specializing in CFIDS use therapies which attempt to alter the mechanism or nature of the disease. For additional
information on treatment, see The CFIDS Chronicle.
How many people have CFIDS? A new study by DePaul University
estimates CFS at approximately 422 per 100,000 persons in the U.S. This means as many as 800,000 people nationwide suffer
from the condition. 90% of patients have not been diagnosed and are not receiving proper medical care for their illness (Jason
LA, Richman JA, Rademaker AW, Jordan KM, Plioplys AV, Taylor RR, McCready W, Huang CF, Plioplys S: A Community-Based Study
of Chronic Fatigue Syndrome Arch Int Med 1999; 159(18):2129-37.).
Few studies of CFS in children and adolescents
have been published. It is well-accepted that adolescents get CFS, although less frequently than adults.
Who gets
CFIDS? CFIDS strikes people of all age, ethnic and socioeconomic groups.
Research has shown that CFS is about
three times as common in women (522/100,000) as men, a rate similar to that of many autoimmune diseases, such as multiple
sclerosis and lupus. To put this into perspective, CFS is over four times more common than HIV infection in women (125/100,000),
and the rate of CFS in women is considerably higher than a woman's lifetime risk of getting lung cancer (63/100,000).
Do PWCs get better over time? The course of this illness varies greatly. Some people recover, some cycle between periods
of relatively good health and illness and some gradually worsen over time. Others neither get worse nor better while some
improve gradually but never fully recover.
The CDC is conducting a long-term study of PWCs to learn more about the
course of illness. CDC investigators have reported that the greatest chance of recovery appears to be within the first five
years of illness, although individuals may recover at any stage of illness. Investigators also have found an apparent difference
in recovery rates based upon the type of onset. PWCs with sudden onset reported recovery nearly twice as often as those with
gradual onset. This study is ongoing and observations about the course of illness are likely to change as more data are collected.
What causes CFIDS? The cause of CFIDS is not yet known, but a growing number of researchers is dedicated to
uncovering the cause (etiology), mechanism of disease (pathophysiology) and effect on the body(pathogenesis).
Current
research shows evidence of immune system dysfunction in CFIDS. The exact nature of this dysfunction is not yet well-defined,
but is generally viewed as an up-regulated, or overactive, state. Considerable evidence indicates that CFIDS patients have
a dysfunction of the central nervous system.
Researchers are trying to identify the agent(s) responsible for causing
CFIDS. Scientist are also studying immunologic, neurologic, endocrinologic and metabolic abnormalities and risk factors (such
as genetic predisposition, age, sex, prior illness, environment and stress) which may affect the development and course of
the illness.
Are viruses involved in CFIDS? Many scientists are convinced that viruses are associated with CFIDS
and may cause the disease. It was once thought that Epstein-Barr virus (EBV), a herpesvirus that causes mononucleosis, caused
this syndrome. Elevated antibodies to a number of viruses, including EBV, cytomegalovirus (CMV) and human herpesvirus-6 (HHV-6),
indicate a viral component to CFIDS, although not necessarily a cause. Enteroviruses, newly discovered retroviruses, herpesviruses
and other viruses are being studied to see if they cause or contribute to the disease process.
Is CFIDS contagious?
No one knows what causes CFIDS or if it can be transmitted. Most people in close contact with CFIDS patients have not
developed the illness; however, clusters of cases have occurred in families, workplaces, schools and communities. Several
of these clusters have been investigated and no infectious agent has been found. While there is no documented evidence that
CFIDS is infectious, it is studied by the infectious disease divisions of the National Institutes of Health and Centers for
Disease Control and Prevention.
Preliminary research indicates that genetics may help determine who gets the illness.
When members of the same family become ill, they are more often blood relatives than spouses.
What precautions should
PWCs take? PWCs should consult their physicians about what precautions may be advisable since questions remain about the
possibility of contagion.
In general, persons with serious illnesses are advised against donating blood, blood products
or organs. Additionally, some physicians encourage PWCs to take univeral precautions recommended to persons with infectious
illnesses until more is known about CFIDS. These measures also would help protect PWCs from common viruses and bacteria that
could contribute to an increased number and/or severity of symptoms. Other physicians believe that there is no risk to non-ill
contacts and that no special precautions are necessary.
Should PWCs receive flu shots or other immunizations? Persons
with CFIDS often have up-regulated immune systems and frequently don't make antibodies after receiving immunizations. Persons
with up-regulated immune systems are at higher risk for adverse reactions to vaccines. Allergy shots, however, seem to be
better tolerated. PWCs are urged to consult their physicians and to analyze the potential benefits and risks before taking
or refusing any immunization.
Is exercise helpful or harmful? One hallmark of CFIDS is an intolerance of previously
well tolerated levels of physical activity. Most PWCs' symptoms worsen severely, sometimes for days, following even minor
exertion. Physicians generally recommend that PWCs perform limited (and preferably anaerobic, e.g., light weight training)
physical activity to guard against the negative consequences of deconditioning, but that they listen to their bodies and not
push beyond their limits.
Is weight gain common? Some patients lose weight, but many PWCs gain it without a
significant change in eating habits. This gain may be due to CFIDS-related disturbances in metabolism as well as decreased
activity.
Is depression common? Many PWCs become depressed as a result of--rather than a cause of--CFIDS. Depression
is common in all chronic illnesses; it results from numerous losses, life changes and altered brain chemistry. In some cases
depression becomes very severe. CFIDS-related depression can be managed with medication and/or supportive counseling.
What role does stress play in this illness? Stress is very harmful to PWCs. Physical and/or emotional stress usually
worsen symptoms and contribute to relapse. PWCs are advised to decrease the stress in their lives as much as possible.
In more global terms, stress has been found to weaken the immune system and increase susceptibility to illness in most
animals, including humans. Some researchers believe that stress (especially major life changes) may contribute to the onset
of CFIDS, as it does in many other diseases.
How does pregnancy affect CFIDS? This issue has been explored only
informally. According to limited clinical observations, some pregnant women with CFIDS experience no change in their symptoms.
Others report symptom remission from early in the pregnancy and lasting until about six weeks after the delivery.
Pregnant
women with CFIDS should seek care from an obstetrician early and often during pregnancy. Many medications that treat CFIDS
symptoms must be stopped or decreased during pregnancy and resumed after giving birth and discontinuing breast feeding.
The question of whether CFIDS can be transmitted from parent to child remains unanswered. There is currently no evidence
that babies born to parents with CFIDS are different from other babies. When deciding whether or not to have a child, PWCs
and their partners should consider the enormous expenditure of energy required to care for a baby and, later, an active child.
Is CFIDS related to other illnesses? There are a host of illnesses that share many of the symptoms of CFIDS.
Fibromyalgia, neurally mediated hypotension (NMH), chronic Lyme disease and interstitial cystitis are just a few of many overlapping
syndromes. Research is underway to determine the relationship among these illnesses.
Specifically, fibromyalgia
means pain in the muscles, ligaments and tendons. The requisite for diagnosis of fibromyalgia is widespread pain lasting a
minimum of three months and at least 11 of 18 specified tender points clustering around the neck, shoulders, chest, hips,
knees and elbows. Other symptoms commonly experienced by persons with fibromyalgia include sleep disturbance, cognitive difficulties,
irritable bowel, fatigue and headache.
Researchers at Johns Hopkins University have reported preliminary evidence
supporting a link between CFIDS and a known blood pressure disorder called neurally mediated hypotension (NMH) or vasodepressor
syncope. In NMH, the brain and the heart do not communicate properly, even though both are structurally normal. An inappropriate
response to adrenaline (a hormone produced when the body is under stress) causes blood pressure to fall when it should rise.
Individuals with NMH feel lightheaded and may feel faint when this condition is triggered by various physical and emotional
stressors. Cognitive problems, muscle aches and severe fatigue often follow and can become chronic. Further studies, including
clinical trials of treatments used to manage this condition, are underway at Johns Hopkins University, the National Institutes
of Health and other medical centers.
Why is this disease called CFS or CFIDS? The term chronic fatigue syndrome
(CFS) was adopted in 1988 in the original case definition published in the Annals of Internal Medicine. The authors selected
this name based on limited knowledge about the illness and a belief that the most common complaint among patients was debilitating,
prolonged fatigue.
The term "chronic fatigue and immune dysfunction syndrome" (CFIDS) was proposed by
a researcher to illuminate the multi-systemic impact of the illness. CFIDS and CFS are now used interchangeably by PWCs, clinicians
and researchers.
Unfortunately, the name chronic fatigue syndrome trivializes the disease. CFS is often confused
with chronic fatigue, a symptom of most illnesses. The name also places too great an emphasis on the single symptom of fatigue.
In the late 1980s, the media coined the term "yuppie flu" to describe CF(ID)S. This demeaning label reflected
differences in access to health care among those with the disease and showed a lack of understanding about its complexity.
However, many people went undiagnosed or were misdiagnosed because of the perception that CFIDS only affected white professionals.
Today we know that there is nothing "yuppie" about CFIDS. It is a serious illness that knows no demographic or socioeconomic
boundaries.
CFIDS advocates and physicians who understand the scope of the illness have great interest in adopting
a more appropriate name for CFIDS. This is likely to occur only after the cause or a marker is found or the pathogenesis (effect
on the body) is better understood.
What is being done to conquer CFIDS? The suffering inflicted by CFIDS can
be alleviated only through education, enlightened public policy and research--the three areas in which The CFIDS Association
of America leads the nation. These Association-sponsored programs have brought early and impressive progress and are essential
to the battle against CFIDS.
Individual contributions are the Association's greatest source of support for these
critical programs. Help us mobilize the medical community to eradicate this disease by becoming a member of and/or making
a tax-deductible contribution to the Association today. Donations are tax-deductible to the full extent allowed by law.
For further reading-- Chronic Fatigue Syndrome Diagnosis and Treatment--Information on diagnosis, management, and
clinical trial results, provided by The CFIDS Association of America.
Chronic Fatigue Syndrome Research News--new
publications on CFS, fibromyalgia, neurally mediated hypotension, Chiari Malformations, and other related conditions; studies
recruiting subjects; information for patients considering enrolling in clinical trials; and scientific databases and bibliographies.
Resources provided by The CFIDS Association of America.
The CFIDS Chronicle published quarterly by The CFIDS
Association of America. Includes an online archive.
Disability and Health Insurance--news, policies, and resources
provided by The CFIDS Association of America.
CFS in Youth Home Page--Information for children, adolescents, and
college students with chronic fatigue syndrome, fibromyalgia, neurally mediated hypotension, and related conditions, including
bibliographies of pediatric research, pen pals, and information for parents and educators.
Running on Empty by
Katrina H. Berne, PhD
A Doctor's Guide to Chronic Fatigue Syndrome by David S. Bell, MD
For more
information on these and other publications about chronic fatigue and immune dysfunction syndrome, contact the Association's
Resource Line at 704/365-2343 and ask for a list of educational materials.
------------------------------------------------------------
The CFIDS Association of America
Advocacy, Information, Research and Encouragement for the CFIDS Community PO
Box 220398 Charlotte NC 28222-0398 Toll-free Info Line: 800/442-3437 Resource Line: 704/365-2343 Fax: 704/365-9755
General e-mail: info@cfids.org The CFIDS Association of America, Inc. If you have comments about this website
please contact webmaster@cfids.org
