If you're a doctor who has treated chronic fatigue syndrome — and the father of two sons suffering from the illness — you take heart where you can.
So when retired Salt Lake internist Landon Beales returned recently from an international chronic fatigue symposium in Seattle, he was nearly ecstatic about what he'd heard there. A professor of medicine from Harvard had delivered a talk, in which he said, "See, the patients were right all along. There really is something."
While it might not seem like much of a victory, Beales knows how slow the medical establishment has been to recognize that chronic fatigue syndrome and related illnesses, such as fibromyalgia and gulf war syndrome, are conditions that can be measured and tested and mapped, just like any other disease.
Of course, the medical community still doesn't have a cure, or even a foolproof explanation for the symptoms that include exhaustion, pain, depression and mental confusion. But at least it's amassing more data showing that the illnesses aren't just the complaints of malingerers.
Ongoing research, says Beales, points to abnormalities in the immune systems, brains, autonomic nervous system and pain sensory mechanisms of people with chronic fatigue syndrome.
The Fifth International Symposium, sponsored by the American Association of Chronic Fatigue Syndrome, included over 100 presentations by physicians, psychologists, virologists and immunologists. Beales will report in detail about the conference when he addresses the Fibromyalgia Education and Support Group at 7 p.m. on Wednesday, March 7, in Room N-1100 of the Salt Lake County Complex, 2001 S. State. There is currently no local support group for chronic fatigue syndrome.
Some people, including Beales, believe that chronic fatigue syndrome, fibromyalgia and gulf war syndrome are "variations on the same theme." There are "lumpers and splitters," says Beales about the factions who believe the conditions are basically the same with just a different emphasis of symptoms, and the factions who see the conditions as separate entities.
Two of Beales's sons, one 38 years old and the other 40, have been diagnosed with chronic fatigue syndrome. His younger son was first afflicted 17 years ago and still, to this day, is so debilitated by fatigue and pain that he can't work. The older son contracted the syndrome in 1998. "He got a high fever, a bad sore throat and ringing in one ear — and he never recovered," reports his father. "He doesn't have nearly the severity of symptoms that Howard has, but he still has fatigue and brain fog."
Beales' older son was under a lot of stress when he came down with his first symptoms, his father says. Psychological stress is considered to be one of the "triggers" of the condition. Others triggers are infection or virus, physical trauma (whiplash from an auto accident is a big culprit), hormonal alteration, drugs, chemical exposures (insecticides and industrial pollutants, for example) and catastrophic events, Beales says.
That pretty much includes most of 21st century living. So why do some people respond with chronic fatigue and fibromyalgia and others don't? Why do two Beales sons have the illness?
Studies in twins show that there seems to be a genetic predisposition in some people, he says.
Although once thought to be fairly rare, it is now believed that the incidence of chronic fatigue syndrome and fibromyalgia is 522 out of every 100,000 people in the United States, which adds up to about 800,000 people, Beales says. That compares to 900 per 100,000 for diabetes and 26 per 100,000 for breast cancer.
Many researchers still believe that the main trigger is a virus or a number of viruses. One virologist cultured the human herpes 6 virus from 60 percent of chronic fatigue and fibromyalgia patients he studied.
Whatever the trigger, says Beales, "It seems that the anti-viral pathway gets turned on and doesn't turn off. So people feel like they have the flu all the time." The anti-viral pathway, he explains, is the body's cellular way of destroying viruses. But the same method the cell uses to kill a virus also damages the normal function of the cell.
Viruses appear only to be a trigger, not the underlying cause of the syndromes, however. Beales says he knows patients who have taken anti-viral agents for years. Their symptoms disappear, but when they go off the drugs the chronic fatigue or fibromyalgia returns.
Another new study showed that a high percentage of patients studied develop an autoimmunity to their own brain cells. Another study showed that metabolic and blood profusion defects can be observed on the scans of people with chronic fatigue, "so you don't find the blood going in the areas of the brain in a normal fashion," he explains. MRI scans also show brain lesions similar to those found in multiple sclerosis patients.
Other researchers have found that people with chronic fatigue have faulty pain mechanisms. Patients with fibromyalgia, for example, have three times the normal levels of "substance P," a neurotransmitter that transmits and amplifies pain. They also have four times the amount of nerve growth factor, a neurochemical that stimulates the production of substance P. And they have lower levels of serotonin and norepinephrine, both of which work to control pain.
The bad news is that nine out of 10 people with chronic fatigue syndrome and fibromyalgia never get better. "People learn to adapt to the illness," he says. "Many people learn to slow down. Then they can function on a lower plane."
The good news is that every new piece of research may eventually add up to some answers. "As time goes by," Beales says, "and people start discovering these mechanisms of illness, things can be done to treat them."