In years past, doctors scoffed at washing their hands before surgery, prescribed vaginal douches for birth control, and made stomach ulcers synonymous with stress. Today, minor cuts get a scrubbing, contraception is a science, and antibiotics are used to treat gastric ulcers.
A Birmingham physician, Dr. A. Martin Lerner, wants to bring a similar revolution to the understanding and treatment of chronic fatigue syndrome, aka CFS or "the yuppie flu." The complex of symptoms typically affecting white women in their 30s is characterized by profound fatigue and frequently dismissed as a psychological disorder.
Lerner contends that the problem isn’t in the head, but in the heart — a viral infection of the heart, to be precise. His research has been accepted in peer-reviewed journals and has passed the hurdles for clinical trials. Many people in the medical community, however, have responded with cold shoulders.
"When I started my research, I thought I had the tiger by the tail. Now, it feels like an elephant," says Lerner. His colleagues at William Beaumont Hospital in Royal Oak blame old-fashioned medical skepticism.
Although the fatigue syndrome most often affects 30-something white women, anyone can get the disorder. Officials of the Centers for Disease Control and Prevention (CDC) estimate that as many as 500,000 people in the United States have a CFS-like condition. Symptoms include severe chronic fatigue lasting longer than six months, muscle pain, joint pain, headaches and unrefreshing sleep.
For Sharon Parven McGladdery, a 43-year-old mother from Farmington Hills, CFS has meant more than a decade of aches and weariness that doctors, to her mind, have not been able to understand or treat.
The first doctor who saw her told her that her problem stemmed from perfectionism. The second doctor blamed her chronic fatigue on job stress. Another doctor told her she would just have to live with it.
"Sleep no longer offered any relief," McGladdery says. "I woke up feeling as if I had just been hit by a truck and was lying unconscious in the middle of the road. I would think ‘Dear God, how am I going to get out of bed?’"
Once an athlete and computer programmer, McGladdery had to hire help to care for her infant son; picking up her baby and washing dishes were extremely difficult. Grocery shopping became an all-day event that would leave her exhausted for days. "I planned for it as a general plans for battle," she says.
Doctors have been treating her with anti-inflammatory drugs, but those haven’t brought her much relief. "It’s like a Band-Aid on cancer," she says. "I was desperate and didn’t know how I could continue day after day like this."
The heart theory
The experts at the CDC haven’t identified a cause for CFS. They recommend treatment to relieve symptoms, avoidance of undue exertion and behavioral therapy. Lerner disagrees. An infectious disease specialist at William Beaumont Hospital, Lerner counts the CFS patients he has returned to health in the hundreds.
Lerner is the former chief of the Divisions of Infectious Diseases at Wayne State University and Detroit Receiving Hospital. He’s the former governor of the Michigan branch of the American College of Physicians. His CFS studies have been published in medical journals such as Infectious Disease in Clinical Practice, Clinical Nuclear Medicine and CHEST.
Lerner contends that CFS patients have "abnormal T-wave inversions" on their 24-hour electrocardiograms, a sign of a weakened heart muscle normally associated with cardiovascular disease. Lerner and his fellow researchers ruled out coronary artery disease in these patients. They then measured antigens and antibodies to the herpesvirus and the related Epstein-Barr virus, signs that those viruses are active and multiplying. The CFS patients tested positive for one or both. Results from the studies led Lerner to believe that CFS is a virally induced heart disease.
Others aren’t convinced.
Dr. Cary Engleberg, head of Infectious Diseases at the University of Michigan, thinks that viruses may play a role in CFS, but "it’s much more complicated than that." He says that CFS is probably caused by a number of factors. CFS is most likely caused by an inappropriate reaction to stress, causing both physical and psychological symptoms, says Engleberg.
Michele Reyes, a researcher at the CDC, says she has been unable to duplicate Lerner’s findings in her own research. She has never published the results of these failed studies.
According to Lerner, people at the highest political levels of medicine believe CFS is a psychological disorder. "It’s extraordinarily difficult for the medical community to accept anything opposite to the norm," he says.
Dr. William O’Neill, head of cardiology at William Beaumont Hospital, says that although the theory has not been definitively proven, Lerner’s studies are highly suggestive that CFS is, in fact, a heart disease. "He’s possibly identified a new cardiomyopathy," O’Neill says. "His studies might eventually help us treat other heart diseases as well."
Lerner treats his CFS patients with high doses of the herpes drug Valtrex. He’s found that most of his patients regain their cardiac function and return to normal health within six months.
McGladdery compares herself to a car battery with no alternator. She’s not recharging and has no idea where she gets the energy to live from day to day.
At times, her muscle pain is so severe she cannot even roll over in bed.
"It’s like knitting needles are stuck in my shoulders." She curses the doctors who told her it was a psychological problem and made her doubt her own sanity. "Thank God I have friends and family who’ve stood by me."
She recently saw Lerner for the first time and underwent a battery of tests.
Tests confirmed abnormal T-waves and the presence of the Epstein-Barr virus — as with the other patients Lerner has studied. He started McGladdery on Valtrex. Now she keeps her fingers crossed and waits to see if the drug will ease her symptoms.
She doesn’t know if Dr. Lerner has found the magic cure or not. "All I know is that when I saw him, he understood my disease," she says. "He knows these symptoms are not ‘all in my head.’"