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What Doctors Are Finally Starting To Understand About Chronic Fatigue Syndrome

The complex disorder finally gets its due.
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Eight years ago, Ann Cavanagh Kramer was promoted to director of commercial sales at Visa. She transferred across the country to work at the company's San Francisco Bay Area office and spent the next six months traveling to attend conferences and meet potential clients. She was, in her own words, "at the top of my game." But after running a half marathon in October 2007, she suffered back-to-back viral infections. Then she began experiencing dizzy spells and fatigue so intense, she'd sleep for 15 to 16 hours a day. "When I wasn't working, I was sleeping," says Cavanagh Kramer, 38. She thought she might have a sinus infection, bronchitis, or the flu. Or maybe pneumonia. "No one could figure out what was wrong with me."

When her fatigue hadn't ebbed by the following year, Cavanagh Kramer was forced to take a leave of absence from work. At the time, some doctors said she was probably just chronically jet-lagged, thanks to her frequent cross-country trips; others labeled her a hypochondriac. "It was infuriating," she says. "I'm not the type of person to play sick." Finally, she went to a clinic that specialized in chronic conditions. It was there that she was diagnosed with chronic fatigue syndrome (CFS), a disabling illness that can cause unrelenting fatigue, trouble concentrating, and sleep disturbances, as well as muscle pain, headaches and other symptoms. CFS affects anywhere from one million to four million Americans, and for reasons that remain unclear, women are two to four times likelier than men to be diagnosed with it.

But an official diagnosis didn't do Cavanagh Kramer much good; the antiviral medications she was prescribed led to only a slight improvement, and she quickly plateaued.

It wasn't until 2012, when she met with Jose Montoya, MD, professor of infectious diseases and geographic medicine at Stanford University Medical Center, that things began to turn around. Montoya is one of a handful of doctors across the country conducting promising cutting-edge research into the causes of and treatments for CFS. After a battery of diagnostic tests for viruses and bacteria, he continued Cavanagh Kramer on one of the antivirals she'd been prescribed, but made a few important changes: He added anti-inflammatory and immune-modulating drugs, as well as an antibiotic for the bacteria he found in her blood. Within weeks, Cavanagh Kramer had enough stamina to leave her house to run two errands in a single afternoon -- something she hadn't been able to do in four and a half years.

Cavanagh Kramer's experience highlights a shift in understanding the ways CFS affects the body and how to treat it. Historically, many doctors considered CFS a psychosomatic disorder that required psychological -- not medical -- intervention. But recent research by Montoya and others has compelled the medical community to take the condition much more seriously.

In the same way that many different organisms can cause pneumonia, Montoya believes that multiple pathogens, including viruses, can trigger CFS. Until recently, no one had been able to detect the havoc these pathogens could wreak on the immune system. Montoya and his colleagues, however, were able to pinpoint immune abnormalities in the blood of CFS patients who had recently become ill, suggesting possible biomarkers for the disease. "Many physicians and researchers thought patients with CFS didn't show signs of active inflammation," says Montoya. "But when we began to perform more in-depth tests, the results were staggering. A picture of patients with highly inflamed bodies emerged before our eyes and validated what they've been telling us for decades."

This year the Institute of Medicine issued a report calling CFS a "serious, chronic, complex and systemic disease" that is "real" and not to be dismissed. It also clearly defined the hallmarks of the illness and renamed it systemic exertion intolerance disease. It's a mouthful, but many experts call it a step in the right direction.

And research into the disorder is expanding. Doctors are now studying how viruses and bacteria may affect the body's immune system and, as a result, possibly activate chronic fatigue in some people but not others. In August, Mady Hornig, MD, an associate professor of epidemiology at Columbia University Mailman School of Public Health and a lead researcher of the immunological investigation with Montoya, was awarded a grant by the National Institutes of Health to collect samples for research on how the microbiome (the vast numbers of bacteria, viruses and fungi that live in and on our body) of the throat, gastrointestinal tract, and blood contributes to chronic fatigue. "We believe that a subset of individuals with CFS has an illness that began as an infectious disease, so we're looking for infectious agents everywhere in the body," explains Hornig. "It may come down to abnormal gut bacteria, which will allow us to devise strategies to influence the microbiome, like administering probiotics."

Most important, the work Hornig, Montoya and their colleagues are doing has the potential to give patients their life back. Since starting on the drug regimen designed by Montoya, Cavanagh Kramer, although not cured and still unable to return to the job she loved, has done things she couldn't have imagined when first diagnosed with CFS. She adopted a puppy, started dating again and eventually married. In May, she gave birth to a baby girl. "Back in 2008, I didn't see a way out," she says. "I didn't think marriage or motherhood was going to be an option. But I've been at this for eight years and still have quite a lot of life left ahead of me."

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