Whats in a Name


by Albert Donnay, MHS
MCS Referral & Resources

Monday, May 12, was CFIDS Awareness Day, which was marked by rallies around the country of people with CFIDS (Chronic Fatigue & Immune Dysfunction Syndrome), their families and allies, including those with related disorders.

by Albert Donnay, MHS, Executive Director, MCS Referral & Resources

Chronic Fatigue Syndrome (CFS), also known as Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), Fibromyalgia Syndrome (FMS), Multiple Chemical Sensitivity (MCS), and Gulf War Syndrome (GWS) share many of same symptoms, as described below, and often occur together, but they differ greatly in the methods used for their diagnosis and treatment.

Which of these diagnoses a person receives usually depends on the type of specialist he or she sees. CFS is most likely to be diagnosed by infectious disease specialists, FMS by rheumatologists, MCS by occupational and environmental medicine physicians, and GWS by physicians in Veterans' Affairs hospitals.

CFS is defined by the Centers for Disease Control as persistent or relapsing fatigue lasting greater than six months that occurs in combination with at least four of the following eight symptoms: 1) short term memory loss, 2) sore throat, 3) tender cervical or axillary lymph nodes, 4) muscle pain, 5) joint pain without swelling or redness, 6) headaches, 7) unrefreshing sleep, or 8) post-exertional malaise that lasts more than 24 hours. CFS may develop at any age but usually starts in mid-life, often in conjunction with a flu-like illness, and is diagnosed more frequently in women. Numerous biochemical abnormalities have been identified in CFS patients but none as yet are considered diagnostic. And although many different treatments are available that appear to help with some CFS symptoms, no lasting cure has been found.

FMS is characterized primarily by widespread chronic muscle and joint pain that is usually associated with disrupted sleep, chronic fatigue, cognitive problems, and many other variable symptoms. According to the American College of Rheumatology, FMS affects about 3% of the population and, like CFS and MCS, is much more common in women. It is easily diagnosed with a brief physical exam that involves the testing of 18 pressure (or tender) points. Treatments focus on relieving pain, avoiding stress, improving sleep and correcting hormonal imbalances.

As with CFS and MCS, the onset of FMS may be gradual or sudden. Sudden onset is usually associated with physical injury or trauma, such as a car accident or difficult childbirth, although FMS also may be initiated by infection or chemical exposure.

MCS, like CFS, is diagnosed primarily by the patient's history. It also is characterized by many diverse symptoms affecting multiple organs (such as the central nervous system and the respiratory system) that wax and wane in response to previously tolerated levels of chemical exposure. These exposures may be either inhaled (like perfume), ingested (like food, alcohol and medications), or absorbed through skin contact (like cosmetics). Other common exposures that trigger MCS symptoms include fresh paint, new carpet, solvents, pesticides, diesel exhaust and poor indoor air quality (as in "sick" buildings).

A random survey of 2,000 adults by California's Department of Health Services found 16% complained of chemical sensitivity and 7% said they had been given the diagnosis of MCS by a doctor! The primary treatments are avoidance of furthering aggravating exposures and detoxification through dietary changes, moderate exercise and frequent saunas.

A 1994 study* found that 70% of patients with FMS and 30% of those with MCS met the strict 1988 criteria for CFS. Up to 67% of those with CFS and/or FMS reported a worsening of symptoms following exposure to air pollution, cigarette smoke, solvent fumes or perfumes. Postexertional fatigue, however, was significantly more common in patients with CFS and FMS than in patients with MCS. This and other studies document the substantial overlap of commonly reported symptoms among CFS, FMS and MCS patients.

GWS is less well defined and refers to the cluster of undiagnosed symptoms of unknown cause that have been reported by over 10% of the US veterans involved in the 1991 war against Iraq (more than 80,000 troops to date). Although studies published by the Department of Defense, Department of Veterans' Affairs, the National Institute of Medicine, and the Centers for Disease Control have failed to identify a "unique syndrome," the symptoms most commonly reported by ill veterans--including chronic fatigue, muscle and joint pain, sleep disturbances, and neurocognitive problems--are almost identical to those seen in CFS, FMS and MCS. Some independent researchers attribute the symptoms of GWS to pesticide and chemical weapons exposures, while others report finding a mycoplasma infection that can be treated, although not cured, with long-term use of antibiotics.

Some researchers believe that Gulf War veterans and others who meet the diagnostic criteria for more than one of CFS, FMS and/or MCS may all be suffering from variations of some underlying but as yet undefined common syndrome. All, for example, seem to share heightened sensitivity to a diverse range of stresses, from physical exertion and infection to environmental exposures. In addition to chemical sensitivity, they often also report heightened sensitivity to bright lights, loud noises, hot and/or cold weather, and/or being touched. Until further research clarifies the nature of this overlap, however, the majority of physicians, insurers, attorneys and support groups continue to regard CFS, FMS, MCS and GWS as separate and distinct conditions.

It is very important that anyone suspected of having any one of these overlapping syndromes be screened for all of the others as well as for other possible underlying causes of their symptoms such as lupus and sclerodema. Ignoring this process of differential diagnosis may have serious health consequences, as health care providers may overlook potentially treatable conditions that present with similar symptoms or recommend inappropriate treatments, such as vigorous exercise for FMS or MCS patients with undiagnosed CFS. Since drug sensitivities are common in all these disorders, physicians who prescribe medications for patients with any of these conditions are advised to start at lower than normal dosages and increase slowly to therapeutic levels only if the medications are well tolerated. Appropriate diagnosis and thorough documentation of all symptoms are also critical for patients seeking insurance coverage, Social Security and other disability benefits, workplace accommodation and/or workers' compensation.

For additional information on the diagnosis and treatment of these disorders and other referral services, please contact the following national organizations:

CFIDS Association of America Fibromyalgia Alliance of America
PO Box 220398 PO Box 21990
Charlotte, NC 28222-0398 Columbus, OH 43221-0990
800-442-3437, fax 704-365-9755 614-457-4222, fax 614-457-2729

MCS Referral & Resources National Gulf War Resource Center
508 Westgate Road 1224 M Street NW
Baltimore, MD 21229-2343 Washington, DC 20005
410-362-6400, fax 410-362-6401 202-628-2700 x162,fax 202-628-6997

* "Comparison of patients with chronic fatigue syndrome, fibromyalgia and multiple chemical sensitivities," Buchwald, Dedra and Garrity, Deborah; Archives of Internal Medicine; 154:2049-53, September 26, 1994.

5/97 editon.
May be freely distributed and reprinted with appropriate credit.

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