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Chronic Fatigue Syndrome: Frequently Asked Questions

Author: Not Specified
Publication: Not Specified
Document Dated: January 1, 1994
Date Posted: January 7, 1997


Editor's Note: The information in this FAQ is likely outdated as one of our readers has indicated. I am including information that this reader provided to assist you in gathering current information.

Reader writes:

The source you used for your information on CFS is quite outdated. The CDC changed the definition in 1994, so the 1988 Holmes definition is no longer accurate. Also, the largest and most informative patient organization is the CFIDS Association of America (http://www.ybi.com/cfids/index.html). You might also want to check out http://www.alternatives.com/cfs-news/index.htm, which is maintained by the man who runs the major CFS mailing lists/newsgroups.

Chronic Fatique Syndrome
Frequently Asked Questions

Copyright 1992 National Chronic Fatigue Syndrome Association

Chronic Fatigue Syndrome: "The Thief of Vitality"

Chronic Fatigue Syndrome (CFS), formerly called Chronic Epstein-Barr Virus (CEBV), is an illness of unknown origin whose primary symptom is extreme, devastating fatigue, compounded by mild fever, sore throat, painful or palpable lymph nodes, unexplained muscle weakness and/or discomfort, headaches, arthralgia, cognitive impairment and sleep disturbance.

Some have likened CFS to a "small touch" of Alzheimer's. The fatigue and weakness can be very extreme -- almost as if every bone in your body were broken and someone asked you to walk.

Most of the population can qualify as having "chronic fatigue," but usually that will improve with adequate rest. "Chronic fatigue" is *only one* symptom of CFS, just as "chronic thirst" can be one symptom of untreated diabetes.

However, CFS differs from the more typical feeling of fatigue; it is a debilitating disorder that interferes with a person's ability to participate in the activity of daily life, sometimes for long periods of time.

Even the simplest task can become a hurdle to overcome, and expending a small amount of energy can put a person right back in bed.

Anyone can get CFS, i.e., children, teenagers, adults, senior citizens, and it affects people from all walks of life, having no regard for social or economic status.

At present, there is no known etiology (cause). CFS is diagnosed by exclusion of all other illnesses known to modern science, such as MS, Lupus, certain cancers, depression, AIDS, thyroid conditions, etc.

Common Questions

How is CFS diagnosed?

When evaluating patients with chronic fatigue of unknown origin, physicians can use the following definition of CFS as a guide. This detailed definition was developed for research use under the leadership of the Centers for Disease Control.

It was published in the "Annals of Internal Medicine" in March 1988. Because the disease is still poorly understood, however, the outlined criteria should be considered provisional. The definition is as follows:

  • New onset of persistent or relapsing fatigue, with at least 50 percent reduction of activity level for at least 6 months.
  • Exclusion of other conditions through History, Physical Examination and Laboratory Examination.
  • 6 of the following 11 symptoms:
    1. Mild fever
    2. Sore throat
    3. Painful lymph nodes
    4. Muscle weakness
    5. Muscle pain
    6. Prolonged fatigue after exercise
    7. Headaches
    8. Joint pain
    9. Neuropsychologic complaints
    10. Sleep disturbance
    11. Acute onset of symptoms
  • And 2 of 3 signs on physical examination:
    1. Low grade fever
    2. Throat inflammation
    3. Palpable or tender lymph nodes
  • Or 8 of the 11 symptoms without physical signs.

Who diagnoses it?

CFS should be diagnosed by reputable clinicians who use the guidelines as detailed in question 1. Another excellent diagnostic resource guide is the NIAID Physicians Brochure.

Who are the authorities on CFS?

Any clinician *should* be able to diagnose it -- beware of having to "fly away" to an authority who will diagnose and treat CFS.

What are the common errors patients and their doctors make in diagnosing CFS?

Patients *must* meet the proper diagnosing criteria; otherwise, other treatable illnesses may be overlooked. There is both over-diagnosis and under-diagnosis.

Can CFS be diagnosed through a blood test, a brain scan, a brain biopsy or any diagnostic test?

There is no blood test, no x-ray and no laboratory test that is diagnostic of CFS yet. CFS is diagnosed by careful history, previous medical record examination, exclusion of certain illnesses, exclusion of primary depression and by following, as carefully as one can, the CDC guidelines without adding numerous other symptoms common to many other illnesses.

How long will I be sick?

Symptoms wax and wane. However, some medical professionals feel symptoms can peak out in 1-3 years in some patients, while others seem to have consistent symptoms that may have several years' duration.

Am I contagious?

Most medical professionals do not feel it is contagious, especially since we have known about it for several years and there has been no "mass epidemic."

Is this related to AIDS?

No, CFS appears to involve an over-active immune system, whereas AIDS involves a suppressed immune system.

Is this fatal?

There is no knowledge of anyone dying because of CFS (certainly, we have heard of a few suicides, but then one must ask: Were there pre-existing psychological problems before getting CFS and/or was the patient diagnosed properly?).

How do I get my doctor/other people to believe I am sick?

Educate them with solid scientific materials, i.e., NIAID Physicians Brochure, NIAID Backgrounder, CDC Publication, Medical Journal articles, "Heart of America News" (a scientifically accurate publication of the National Chronic Fatigue Syndrome Association, Kansas City, Mo.).

What kind of treatment is available? Proper? Improper?

Reputable physicians treat symptoms ONLY, refer patients to credible support groups and provide educational materials to learn to cope with CFS. One should determine that the physician is interested in the patients' well-being and not his/her bank account.

Improper treatments can include IV hydrogen peroxide, IV vitamin C, coffee enemas, Chinese herbs, and blood warming treatments. For those "CFS experts" promising a cure, one finds the treatment is extremely expensive, requires payment in advance and comes with no guarantee.

We know of no refund offers for those who don't get well. Proper nutrition (recommended by the National Dairy Association) and rest can be beneficial.

What is the status of ampligen, kutapressin and magnesium sulfate that received wide media attention during 1991 as treatments and/or cures for CFS?

Ampligen: On October 4, 1991, the FDA issued a statement advising they notified the manufacturer of ampligen that their application to provide the drug under a treatment IND for patients with CFS would not be allowed to proceed.

  • In addition to numerous deficiencies in the application, the FDA is concerned particularly about the serious and potentially life-threatening reactions that were observed during the study, and the conduct of the study in general.
  • These serious reactions included acute hepatic (liver) toxicity, severe abdominal pain and irregular heartbeat.
  • FDA Commissioner David A. Kessler, M.D., emphasized that it was important for CFS sufferers to know that the significant side effects associated with ampligen would have to be weighed against any claimed benefit before the drug could be approved for wide-spread use.
  • The FDA will continue to work closely with the manufacturer in an effort to resolve all issues.
  • (NOTE: It is our understanding that ampligen studies will resume in February, 1993.)

Kutapressin: Kutapressin is an experimental remedy that has not been proven nor published, to our knowledge, in any peer-reviewed journal.

Magnesium Sulfate: Magnesium sulfate is a totally unproven remedy. There was only one small, unreproduced study of magnesium sulfate which had methodological problems. At this time, this treatment is not recommended.

NOTE: One should become fully informed about their health care to determine whether or not they want to play "chemistry set" with their body.

How is CFIDS related to CFS?

Some patients and patient advocacy groups feel the name CFS trivializes the syndrome. Thus, these groups use the name CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome).

However, the scientific literature refers to the illness as Chronic Fatigue Syndrome (CFS). CFS was designated by a group of researchers to encompass the chief symptom of the syndrome without implying a causative agent.

Medical professionals advise the name will remain "CFS" until research identifies the etiological (causal) agent.

What are the myths about CFS?

That it is all in your mind; if you would just rest more, you could be well; if you would eliminate some stress, you would be better, etc.

What is the misinformation about CFS?

That it can be cured, prevented, that it causes cancer, AIDS, etc. Solid scientific research should address all avenues and fact, NOT FICTION, should be reported to the public. Also, there is not a good patient data base, thus "hyped" estimates of patients only tend to create panic and threats of an epidemic which have no basis in fact.

How important is communication between patients and physicians?

The patients' optimum health may depend on it. Physicians are not miracle workers, and patients must learn to become a partner in their health care. If patients do not follow proper nutrition, get adequate rest and conserve their energy levels, they may be decreasing their energy -- a physician cannot "fix" everything.

Is it important to keep a home health record or diary? Where can I get one?

A home health record could be the best tool a physician can use to truly "know" their patient. Clues may be found which could benefit treatment for the patient's well-being. The National Chronic Fatigue Syndrome Association can supply home health records to inquirers.

What can individual patients do?

Join a reputable support group, educate themselves on the true facts of CFS, become a partner in their health care with their physician, write their local, state and federal congressional representatives requesting additional funding for research into CFS.

What about CFS support groups? Are they any good?

Support groups should be just that: "support" -- not treatment. A reputable group will provide only scientific information, but beware of groups holding "sales meetings" for the latest recommended treatment.

What has been the media's role in CFS?

The media has brought awareness to the illness through factual coverage as well as some inaccurate reporting. This is a very difficult disease to understand; even some medical professionals lack understanding of the illness. The media has often referred patients to organizations that can give them educational materials on CFS.

Are there any good books on CFS?

There are approximately 15 books available on CFS which have been reviewed for medical accuracy and are now available through CHIRI, 3521 Broadway, K.C., MO 64111.

Where is the legitimate research being conducted?

The National Institute of Allergy and Infectious Diseases (NIAID) has been awarded $1.2 million in first year funding to establish three CFS Cooperative Research Centers in New Jersey, Massachusetts and Colorado.

The centers will conduct basic science and clinical investigations into CFS and allow new theories and observations about the disease to be more easily evaluated.

The 4-year awards to the new CFS centers will compliment other NIAID-supported research into the syndrome that has been ongoing since 1980.

The Centers for Disease Control (CDC) is doing a surveillance program in four cities: Wichita, Kansas; Reno, Nevada; Atlanta, Georgia; and Grand Rapids, Michigan.

At each location, family practitioners, internists and rheumatologists are being asked to participate. The objectives of the surveillance system are to establish incidence estimates for CFS in the general population and to gather detailed information about the epidemiology of the onset of CFS, clustering of symptoms and patterns of recovery.

Additionally, there is private research throughout the United States and abroad.

Where can I write for complete and accurate information?

NATIONAL CHRONIC FATIGUE SYNDROME ASSOCIATION
3521 Broadway, Suite 222
Kansas City, MO, USA 64111

Sources of information for compiling this text include the following:

NAIAD
Office of Communications
Building 31, Room 7A32
Bethesda, MD 20892

CDC
Viral Diseases
1600 Clifton Road
Mail Stop A32
Atlanta, GA 30333

Holmes, G.P.; J.E. Kaplan; N.M. Gantz et al. (1988)
Chronic Fatigue Syndrome: A Working Case Definition.
ANNALS OF INTERNAL MEDICINE, 108:387.

Consumer Health Information Research Institute (CHIRI)
3521 Broadway - Suite 300
Kansas City, MO 64111


Information for this text is from the brochure, "Chronic Fatigue Syndrome -- The Thief of Vitality," (c) 1992, published by the National Chronic Fatigue Syndrome Association (NCFSA). All rights reserved. Reproduction and/or distribution is permitted provided the NCFSA and the sources are credited.

PRINTED COPIES may be purchased for .25 cents each from:
NCFSA
3521 Broadway, Suite 222
Kansas City, MO, USA 64111
(816) 931-4777.

Please include a SASE with your order.



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