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Portsmouth,Va. Fibromyalgia/CFIDS Support Group

Chronic Fatigue/M.E. and
Gulf War Syndromes

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Chronic Fatigue Syndrome: Evaluation and Treatment(American Academy of Family Physicians)

Behavior Therapy Helps Many Chronic Fatigue Patients By William Collinge/Ask the Experts(WebMd)

Detection of Actin Fragments in Serum: A Rapid Screening Test to Aid in the Diagnosis of Chronic Fatigue Syndrome(ImmuneSupport.com)

View a comparison of symptoms in approximately 650 Desert Storm veterans suffering from Desert Storm Illness with symptoms of CFIDS

HELP FOR PRESCRIPTIONS OF CFIDS SUFFERERS

THE AMERICANS WITH DISABILITIES ACT: CFIDS AND EMPLOYMENT

Detection of Immunologically Significant Factors for Chronic Fatigue Syndrome Using Neural-Network Classifiers

What is M.E./CFS?(The Nightingale Research Foundation)

What is ME? What is CFS? INFORMATION FOR CLINICIANS AND LAWYERS

The Three Phases of Chronic Fatigue Syndrome: Dr. Paul Cheney's Theory(ImmuneSupport.com) (10-25-2002) By Carol Sieverling

Guide to the Management of Chronic Fatigue Syndrome ImmuneSupport.com(12-18-2002) By Prof. Anthony J. Pinching

Presentation: Paul Cheney, M.D., Ph.D., On New Insights Into the Pathophysiology and Treatment of Chronic Fatigue Syndrome ImmuneSupport.com -11-08-2002 (Summary of Cheney tape prepared in October 2001) By Doris Brown

Co-Infections in Fibromyalgia Syndrome, Chronic Fatigue Syndrome & Other Chronic Illnesses ImmuneSupport.com(12-20-2002) By Prof. Garth L. Nicolson

Predicting Who Will Get Chronic Fatigue: Mono Infection, Physical Fitness Play a Role

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February 23, 2003

National Gulf War Resource Center, Inc.

Chronic Fatigue Syndrome and Thyroid Function (ImmuneSupport.com -07-12-2002)

Paul Cheney, M.D., on Balancing the Immune System in Chronic Fatigue Syndrome (and Fibromyalgia Syndrome) by Carol Sieverling (ImmuneSupport.com 01-10-2003)

The Vaccine Controversy: Why Full Informed Consent Must be Instituted for All Vaccines (Relevant to CFS & FM) (ImmuneSupport.com 01-13-2003)

New Research: Analysis of DNA from Plasma of Chronic Fatigue Syndrome Patients (ImmuneSupport.com 01-08-2003)

Red Blood Cells and Chronic Fatigue Syndrome By Jule Klotter (ImmuneSupport.com 01-15-2003)

Mayo Clinic Research Finds New Role for Interleukin-6 [Chronic Fatigue Syndrome & Fibromyalgia News] (ImmuneSupport.com 01-17-2003)

Human Herpesvirus 6 Infection and the Development of Diseases Including Chronic Fatigue Syndrome (ImmuneSupport.com 01-22-2003)

Dr. Anthony Komaroff's Recommendations for Chronic Fatigue Syndrome Care By John W. Addington (ImmuneSupport.com 01-24-2003)

Autoimmune Neurological & Rheumatic Diseases: Role of Chronic Infections in Morbidity and Progression [Chronic Fatigue Syndrome & Fibromyalgia News] (ImmuneSupport.com 01-27-2003)

Evidence for Bacterial and Viral Co-Infections in Chronic Fatigue Syndrome Patients (ImmuneSupport.com 01-29-2003)

Changes in Health Status in a Group of Chronic Fatigue Syndrome and Chronic Fatigue Patients Following Removal of Excessive 50 Hz Magnetic Field Exposure (ImmuneSupport.com 02-03-2003)

Fresh Approach to Chronic Fatigue Syndrome Urged (ImmuneSupport.com 02-07-2003)

Ciguatera Toxin and Chronic Fatigue Syndrome: Should You Be Tested? (ImmuneSupport.com 02-10-2003)

Fibromyalgia & Chronic Fatigue Syndrome Resource

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

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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.

Most Sincerely,
Kathleen Houghton


Until you read "The Thief of Many Lives" you too may have questioned
the validity of Chronic Fatigue Syndrome as a real illness. It is
VERY real, especially for us the sufferers and our caregivers. The
credibility and validity of this disease has long been a most
difficult message to convey to our Government, Physicians, Healthcare
Professionals, friends, families and general public.  What makes this
even more challenging than how we might physically appear is the
inappropriate name given to such a serious and debilitating disease.
Consequently, one of the worse things someone can say to a person
with CFS is how well we look on a particular day... we must be
feeling "better" ... "better" than what? Death? Unfortunately, CFS
victims generally do not feel better than death... warmed over or
otherwise!  Lengths of time go by, months, seasons, and then years
when all of our reserved energy is used simply to eat and breathe and
those are the "good" days. Unfortunately, not many see this, as most
people with CFS are left to suffer behind closed doors. 
Unexplainably, our cries for awareness, and validity continue to fall
upon deaf ears. WAKE UP AMERICA  (or other country)!!!  CFS is at
epidemic proportions destroying lives and affecting millions of
people worldwide.
May 12th is International CFS Awareness Day. Please make your voice
be heard. Inform others about the tragic impact this illness is
having on you, your loved one and our nation (your country).
BE AWARE OR BEWARE… As you could be writing this letter from your
bed next May 12th.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The Thief of Many Lives
Kathleen Houghton ---  Alaska CFS-MCS Association 1996 *Revised
2002.

   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.

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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.
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