- Last Updated: 07 November 2015 07 November 2015
Reviewing the key ME/CFS symptoms
To lay the foundation for his potentially groundbreaking theory, Dr. Bell began by outlining what he sees as the four major clusters of symptoms that any viable theory of CFIDS/ME etiology must explain: fatigue, neurological symptoms, pain, and multiple sensitivities.
Dr. Bell's first observation was that "fatigue" is a totally "inappropriate" word to describe the utter exhaustion and weakness experienced by PWCs. In common usage, it connotes a normal person's recovery from abnormal exertion, "like regaining energy after a busy day"—not the characteristic CFIDS/ME experience. He described CFIDS/ME fatigue as including asthenia (weakness), orthostatic intolerance (the inability to stand up or remain upright, rather than fatigue), and sensations of impending collapse—for example, a patient may walk out to her mailbox, and then feel so weak that she feels unable to walk back to the house. The latter may be "the most important [CFIDS-specific] of this first group of symptoms," he said.
Bell noted that, while post-exertion fatigue in CFIDS is not readily improved with rest, "Many patients will say that they feel okay if they just lie down all day—that life becomes tolerable with [consistent] rest." Standing up or even sitting up, by contrast, can trigger the fatigue, pain, and other symptoms.
Another unusual aspect of CFIDS/ME fatigue is that it often follows a relapsing-and-remitting pattern—not just day to day, but frequently also over the course of a single day. Many patients might be unable to function in the morning and evening, say, but have higher functioning level for a couple of hours during the afternoon, during which they can run errands or do light housework. On the other hand, some patients have a consistently low functioning level all day long, day after day and year after year: "It has always been my feeling that people with few fluctuations have the worst course [prognosis], while those who feel '20 percent' one day and ‘80%' the next have the greatest chance of recovery. This though, has never been formally documented," Dr. Bell noted.
While many patients have symptoms in virtually every body system, Dr. Bell feels that the combination of fatigue and the neurological problems, "which are very disruptive," are the principal factors in PWC's inability to work. This second category of symptoms includes the cognitive dysfunction—mental exhaustion, an inability to focus, poor short-term memory—as well as balance disturbances, paresthesias, myoclonus, and lightheadedness or dizziness.
Often disabling, pain represents the third key CFIDS/ME symptom Dr. Bell said. "It can be of variable intensity, it may or may not parallel the severity of the illness, and it can be literally any place in the body," he observed, adding that many patients seek care from multiple doctors in their quest for relief: perhaps an Ear/Nose/Throat (ENT) for headaches, a neurologist for the muscle pain, a gastroenterologist for digestive problems. One consistent and suggestive characteristic of the pain is its laterality—painful lymph nodes, muscles, sore throat, etc., that occur on only one side of the body. This suggests to Dr. Bell that CFIDS is a disorder of pain modulation—"clearly a disorder in the brain"—rather than a problem in the affected organ systems.
The fourth problem category, multiple sensitivities, is extremely consequential in diagnosis, Dr. Bell stated. It is so common that "I feel there's something wrong with any theory [regarding the basis of CFIDS] that doesn't provide an explanation for these." Sixty to 70 percent of PWCs report sensitivities, he estimated—"an extraordinarily high percentage." The sensitivities from which patients suffer are many and motley: to light, noise, odor, alcohol, drugs, temperature, foods.