The Lyndonville Journal:

Chronic Fatigue Syndrome and Disability

David S. Bell, MD, FAAP

Published in Lyndonville News, September 2000

There is a cruel paradox in the approach to CFS by the Centers for Disease Control (CDC), a paradox that simultaneously allows the diagnosis of CFS and prevents the possibility of disability. This "Catch-22" is currently one of a number of hardships faced by those persons truly disabled by CFS. In all the literature published by the CDC concerning the diagnosis of CFS it is stated that there are no diagnostic tests and that the diagnosis is made by exclusion of other fatigue-causing conditions. In the June 2000 article posted on the CDC website the following statements occur:

1. "A standard series of laboratory tests of the patient's blood and urine should be performed to help the physician identify other possible causes of illness... If no cause for the symptoms is identified, the physician may render a diagnosis of CFS if the other conditions of the case definition are met..."
   
   
2. "A number of tests, some of which are offered commercially, have no demonstrated value for the diagnosis of CFS. These tests should not be performed unless required for diagnosis of a suspected exclusionary condition ... or unless they are part of a scientific study."
   
   
3. "No diagnostic tests for infectious agents...are diagnostic for CFS, and as such should not be used..."
   
   
4. "...no immunological tests... natural killer cell (NK) number and function, cytokine tests... or cell marker tests...have ever been shown to have value for diagnosing CFS."
   
   
5. Other tests that must be regarded as experimental...include the tilt table...MRI, PET-scan, or SPECT scan. Reports of a pathway marker for CFS as well as a urine marker for CFS are undergoing further study; however, neither is considered useful for diagnosis at this time."
   
   

In contrast, the application for disability under Social Security requires abnormal physical findings or tests to confirm the diagnosis of CFS. The following is taken from SSR 99-2p, Social Security Ruling TITLES II AND XVI; EVALUATING CASES INVOLVING CHRONIC FATIGUE SYNDROME (CFS). April 30, 1999.

1. "...an individual establish disability based on the evidence of a medically determinable impairment; i.e., one that can be shown by medical evidence, consisting of medical signs, symptoms, and laboratory findings. Disability may not be established on the basis of an individual's statement of symptoms alone."
   
   
2. "...require that an impairment be established by medical evidence that consists of signs, symptoms and laboratory findings..."
   
   
3. "Under the CDC definition, the diagnosis of CFS can be made based on an individual's reported symptoms alone once other possible causes for the symptoms have been ruled out. However, the foregoing statutory and regulatory provisions require that, for evaluation of claims of disability under the Act, there must also be medical signs or laboratory findings before the existence of a medically determinable impairment may be established."
   
   The social security ruling goes on to list some of the medical signs that have been noted and lists laboratory evidence, including abnormal MRI, tilt table testing, and elevated Epstein-Barr virus antibody levels that may establish a "medically determinable impairment." However the Epstein-Barr antibody levels are so high that less than 1% of CFS patients would fit the criteria.
   
   

Here is the paradox: practicing physicians are told that there is no diagnostic marker either on physical examination or on laboratory testing, yet to establish the diagnosis for disability, abnormal medical signs and laboratory evidence is required.

There is no doubt that CFS can be disabling. Careful understanding of the CDC and Social Security rulings and careful wording of the medical evaluations may establish both the diagnosis and presence of disability. However this tightrope is beyond the understanding and interest of the average primary care physician, leaving the patient with CFS in an impossible and sometimes hopeless situation. I feel that a complete overhaul of the diagnostic criteria for CFS is necessary.

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