Santa Rosa doctor’s study offers new insight into chronic fatigue syndrome
Brittany Harrison of Santa Rosa was an A-student, valedictorian of her eighth-grade class and a promising ballerina when the symptoms of chronic fatigue syndrome set in at age 13.
By 17, she was bedridden all day in a dark room, unable to stand or walk and in constant pain from a severe migraine.
Unable to eat anything but soft food and occasionally fruit, she lost weight and stopped going to school. An associated symptom known as “brain fog” prohibited her from reading, doing school work and even having conversations because she couldn’t understand what she was reading or what someone was saying to her.
“I could crawl to the bathroom,” she said.
Harrison, now 21, is one of an estimated 1 to 2 million Americans with chronic fatigue syndrome, a debilitating illness that can transform hardworking, type-A personalities, into patients who, in some cases, cannot work and can barely take care of themselves.
“It destroys your life,” said Dr. Eric Gordon, a Santa Rosa physician whose practice specializes in treatment of chronic disorders, such as Lyme disease, arthritis and chronic fatigue syndrome. “You can’t function.”
The illness is often dismissed as a psychological condition, another misconception that sufferers such as Harrison must wage in their daily fight against the illness.
For years, researchers and physicians have sought medical clues that would confirm the illness is a physical disorder and which could help in diagnosis and treatment.
A new study initiated by Gordon and including Harrison as one of the subjects could provide that breakthrough.
The study, published last month, detected a “chemical signature” in the blood of chronic fatigue syndrome patients, establishing for the first time that chronic fatigue syndrome is an “objective metabolic disorder,” said co-author Dr. Robert Naviaux, the UC San Diego researcher who identified the blood chemical anomalies associated with the condition.
Gordon is a co-author of the study, and most of the patients in the study came from his practice.
Their study, “Metabolic features of chronic fatigue syndrome” - published in the latest issue of the Proceedings of the National Academy of Sciences - said the discovery “opens a fresh path for the rational development of new therapeutics” for a condition that currently has no known cause, cure or even an established diagnosis.
For Gordon, the finding transcends science.
“We’re going to help people get their lives back when it’s accepted that they are sick,” he said.
Wayne Anderson, a licensed naturopathic doctor on Gordon’s staff and a study co-author, said chronic fatigue syndrome, or CFS, has long been regarded as a psychological problem for “depressed people who are poorly managing things in their life.”
And when repeated medical tests find no evidence of disease and the person’s condition doesn’t improve, friends and family “tend to write you off,” isolating the patient, Gordon said.
The newly published study refutes that premise by showing “there is a very specific biological basis for chronic fatigue,” Anderson said.
Harrison, who grew up in the foothills east of Sacramento, said she felt vindicated by the findings.
“I have family members who don’t believe me,” she said. Now she can show them “this is real, I didn’t just give up on life.”
As a teenager dealing with the new illness, she spent many months in isolation, interacting only with her mother, Katherine Harrison.
Over nearly three years, they consulted with 42 doctors and holistic practitioners before connecting with Gordon, and they eventually moved to Santa Rosa to facilitate care from his office.
No longer confined to bed, she can now walk around her home, eat normal, healthy food and get around outside with a walker instead of a wheelchair.
“I love being able to walk on my own,” she said.
Harrison has regained the lost weight and can read books, watch television, text and talk to friends who visit her at home.
Her chronic headache lingers, a bit less severe, and she hopes to prepare for tests to get her GED credential.
Gordon’s treatment “has brought my daughter back to me,” Katherine Harrison said.
The Mayo Clinic describes CFS as “a complicated disorder characterized by extreme fatigue that can’t be explained by any underlying medical condition.”
It is so poorly understood that it goes by three names: CFS, which some patients see as both stigmatizing and trivializing; myalgic encephalomyelitis, which some clinicians consider inaccurate; and systemic exertion intolerance disease, proposed by the Institute of Medicine last year.
A Newsweek magazine story in 1990 featured the term “yuppie flu,” which is considered offensive by both patients and physicians. In the 19th century, a similar condition was known as neurasthenia, or nervous exhaustion.
In the absence of any test, the Centers for Disease Control and Prevention says CFS is diagnosed by identifying at least four of eight specific symptoms in a patient suffering from at least six months of severe fatigue.
The core symptoms of CFS, Gordon said, are “post-exertion malaise,” in which people feel worse rather than better after exercise, combined with “non-restorative sleep,” which provides no relief.
“You never get the feeling of a good night’s rest,” he said.
The study notes that many patients endure a “diagnostic odyssey” that can cost more than $100,000 over years of searching for answers, missing work and experiencing “significant reductions in quality of life.”
A 2004 study estimated the economic impact of CFS at $20,000 in lost productivity for every person, totaling more than $9 billion a year in the United States. A 2008 study, which estimated that CFS affected more than 800,000 adults, pegged the total cost to society at $24 billion a year.
Gordon said he and his colleagues at Gordon Medical Associates conceived the idea for the latest study, which matched blood samples from 45 male and female CFS patients, including Harrison, against samples from 39 healthy people.
They enlisted Naviaux as the “brains behind the study,” Gordon said, for performing the mass spectrometry analysis of the blood samples and interpreting the results.
The study does not establish a diagnosis for CFS, but that could come in six months to a year from continuing studies with larger groups of patients, Gordon said.
Naviaux said in a separate commentary that the study “reveals a new window into the underlying biology of CFS,” creating hope for treatments that could be tested in clinical trials.