Chronic Fatigue Syndrome: Wrong Name, Real Illness

Miriam E. Tucker


January 08, 2015

In This Article

Clinical Approaches

Even without a definitive laboratory test, physicians can help patients a great deal just by making the diagnosis based on history and symptoms.

In a survey of 256 patients, conducted by the Chronic Fatigue and Immune Dysfunction Syndrome Association of America (now called the Solve ME/CFS Initiative), 88% reported that they had been diagnosed by a physician. However, the majority saw more than four doctors before they received the diagnosis, with delays of 1-5 years for 36%, 5-10 years for 21%, and more than 10 years for 12%.

"This is a desperately long time to live with pain and impairment without validation," Carol Head, the association's president and CEO, said at an Institute of Medicine meeting in January 2014, the first of two open meetings held to discuss the forthcoming new diagnostic criteria.

Many ME/CFS patients—78%, in Dr Komaroff's referral population—are able to pinpoint the condition's onset to a flulike illness from which they never recovered. This differentiates ME/CFS patients from others who seek medical care for other fatiguing illnesses, including depression, whose responses are typically vague when asked when the condition started.

The distinction can also be elicited by asking the patient, "What would you be doing if you weren't ill?" Depressed patients typically won't have an answer, whereas ME/CFS patients will often respond with a laundry list of dreams deferred. "With depression, there is an apathy...[People with ME/CFS] are more angry and frustrated." Dr Komaroff told Medscape Medical News.

Of course, depression can develop as a result of living with ME/CFS, but even that appears to occur only in a minority, he noted.

Although there is no treatment as yet for the illness itself, there are numerous modalities for easing some of the common ME/CFS symptoms such as pain, disordered sleep, and gastrointestinal discomfort. Physicians can also help patients to pace themselves to prevent crashes.[23]

Such management approaches are covered in two Medscape videos for clinicians, "A Case-Based Approach to Chronic Fatigue Syndrome" and "Chronic Fatigue Syndrome: The Challenges in Primary Care." There is also a newly revised "primer" from the International Association for CFS/ME (IACFSME) designed to assist clinicians in managing patients.

Some ME/CFS experts do recommend exercise, and—though the results were controversial—the widely publicized PACE trial[24] suggests that both cognitive behavior therapy and graded exercise therapy may be effective in CFS. Experts sometimes also suggest counseling to help patients cope with the illness, but not with the expectation that either modality will improve the illness itself. Also, patients often reject counseling because of the implication that their illness is psychological.


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