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The devaluing of a chronic illness

THE MISLEADING name "chronic fatigue syndrome" itself has greatly contributed to the stigma and controversy surrounding it. The general point of agreement about CFS has been that it is mysterious and controversial. It may be complex, but a good deal is now known about it, and the controversy is more by design than by nature. CFS is not a synonym for "chronic fatigue," but is often used and viewed as such. Patients have long asserted that they are "tired of being sick," not "sick of being tired." The symptom of fatigue obscures and undermines descriptions of the illness and the undue focus on fatigue has caused significant amounts of scarce research money to be wasted.

Yet those who are severely affected -- those for whom fatigue may be one symptom among many other far more debilitating symptoms -- have had to tolerate continued superficial descriptions of states of health that simply do not reflect any sort of reality. At best, descriptions of the illness often fail to go beyond a rehash of the more benign symptoms (fatigue, memory problems, sleep disorders etc.) -- symptoms that may mimic those of depression or garden variety psychological or stress-related conditions.

But as inadequate and misleading as the name is, the medical definition has proven to be even more problematic. The term chronic fatigue syndrome was introduced in 1988 by the Centers for Disease Control to describe the onset of medically unexplained, persistent or relapsing fatigue. The current revised definition, based on the defining symptom of fatigue, includes a mixed population and can include many diverse conditions, for which CFS became an umbrella term.

To make matters worse, there are different definitions. Investigators commonly and erroneously compare studies based on different definitions, which nevertheless all use and publish under the term CFS. This has led to predictably inconsistent and inconclusive research results.

To solve these problems, a government appointed name-change committee has issued recommendations beyond just a name change. The document calls for the recognition of myalgic encephalomyelitis and other identifiable clinical conditions that had become amalgamated into the CFS rubric.

Myalgic encephalomyelitis is a more appropriate diagnosis than chronic fatigue syndrome, as it describes a specific condition with muscle and neurological symptoms, not only the ubiquitous symptom of fatigue. Currently, both names or descriptions may be used interchangeably. While patients with M.E. can meet the CFS criteria, there are significant distinctions that need to be made.

More specifically, the fatigue in M.E. is exertion related (vs. "tired all the time"), with a significantly prolonged recovery time, and all symptoms (i.e., not just fatigue) can be exacerbated by levels of physical, cognitive, sensory or emotional stress that would have been of no consequence prior to the onset of illness.

Moreover, in M.E., "fatigue" may be a very inappropriate term for what patients experience overall. "Fatigue" is defined as a normal recovery state from exertion, and that is precisely what does not happen in M.E. patients.

Anyone who pulls an all-nighter or runs a marathon will be fatigued -- but they'll recover from it. If a person with M.E. engages in a very minor, limited activity, they may say they are fatigued, but what is really restricting their activity may be pain, dizziness, numbness, weakness -- a sense that they are on the verge of collapse. That is not "fatigue" as we commonly think of it.

Research continues to accumulate that clearly demonstrates that much of what is being diagnosed as CFS is not just a mysterious, unexplained "fatigue syndrome" or a psychological condition (i.e., to most, "unexplained" means psychological). Indeed, there is abundant scientific evidence that medically explains patient symptoms. This includes well-documented, central nervous system, immune, endocrine, cardiovascular, and autonomic nervous system abnormalities, which indicate that it is biologically, not psychologically, determined.

Australian researchers found that the degree of impairment of CFS patients is more extreme than in end-stage renal disease and heart disease, and that only in terminally ill cancer and stroke patients was the sickness impact profile greater than in CFS. The quality of life may be particularly and uniquely disrupted, and patients have related multiple losses -- of jobs, income, homes, relationships, careers, financial security.

The real tragedy is that patients have been left in limbo. The illness has not been adequately funded or properly researched, and there is still no treatment. It is still not uncommon for seriously ill patients to be dismissed as hypochondriacs or malingerers. Many patients are unable to obtain basic medical care or services and benefits routinely accorded other sick patients.

There has been significant prejudice, neglect, and discrimination by the medical profession, the community and even family members. Many patients still are subjected to uninformed, demeaning attitudes and comments from those who do not "believe" in the illness or assume that patients could "think and exercise themselves well."

This denigration of the illness greatly contributes to abandonment, isolation, despair and, too often, suicide. Simply recognizing and legitimizing the illness would at least end the suffering caused by the misconceptions about it.

Jill McLaughlin is executive director of the National CFIDS Foundation Inc.

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