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     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 revised definition was published Dec. 15, 1994 in the Annals of Internal Medicine under the leadership of the Centers for Disease Control and Prevention. The original definition 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:

• Clinically evaluated, unexplained, persistent or relapsing chronic fatigue that is of new or definite onset (has not been 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;
• The concurrent occurrence of four or more of the following symptoms, all of which must have persisted or recurred during six or more consecutive months of illness and must not have predated the fatigue: impaired memory or concentration, sore throat, tender cervical or axillary lymph nodes, muscle pain, multi-joint pain, new headaches, unrefreshing sleep, and post-exertion malaise.

     Who diagnoses it? — CFS should be diagnosed by reputable clinicians who use the guidelines as detailed above. Another excellent diagnostic resource guide is the NIAID Physicians Brochure and CDC Facts About CFS Booklet.

     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, by following, as carefully as one can, the 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 one to three 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 Physician's Brochure, NIAID Backgrounder, CDC Facts About CFS Booklet, medical journal articles, "Heart of America News" (a scientifically accurate publication of the National CFS Association, Kansas City, Missouri).

     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 patient's 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 for treatments and/or cures for CFS? —

• Ampligen: On Oct. 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 was 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 approved more trials, but to date none have been completed. The FDA will continue to work closely with the manufacturer in an effort to resolve all issues.
• 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 healthcare 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 designed 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" estimate 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 patient's 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 and Fibromyalgia 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 42 books available on CFS which have been reviewed for medical accuracy and are now available through CHIRI, 300 E. Pink Hill Road, Independence MO 64057.

     Where is the legitimate research being conducted? — The National Institute of Allergy and Infectious Diseases (NIAID) established three CFS Cooperative Research Centers in New Jersey, Massachusetts and Colorado. The centers conduct basic science and clinical investigations into CFS and allow new theories and observations about the disease to be more easily evaluated. The centers complement other NIAID-supported research into the syndrome that has been ongoing since 1980. The Centers for Disease Control and Prevention began investigations in 1985. The Chronic Fatigue Syndrome program at CDC focuses on surveillance, epidemiologic studies, cluster investigations, natural history studies, identifying risk factors for the syndrome, conducting research to improve laboratory and clinical diagnosis, expanding educational programs for the public and health care providers, and developing control strategies. Additionally, there is private research throughout the United States and abroad.

     Where can I write for complete and accurate information? —
National Chronic Fatigue Syndrome and Fibromyalgia Association
P.O. Box 18426
Kansas City, MO 64133

Sources of information for compiling this brochure include the following:
NIAID, Office of Communications, Building 31, Room 7A32, Bethesda, MD 20892
CDC - Viral Diseases, 1600 Clifton Road, Mail Stop A32, Atlanta, GA 30333

NOTE: The criteria for CFS is from The Chronic Fatigue Syndrome: A Comprehensive Approach to Its Definition and Study published in the Annals of Internal Medicine, Dec. 15, 1994, issue Volume 121, Number 12

Consumer Health Information Research Institute (CHIRI), 300 E. Pink Hill Road, Independence, MO 64057

Written by Orvalene Prewitt for the
National Chronic Fatigue Syndrome and
Fibromyalgia Association
P.O. Box 18426
Kansas City MO 64133
* This information may be reprinted without written permission
provided the sources are credited.*