Melissa Kaplan's
Chronic Neuroimmune Diseases
Information on CFS, FM, MCS, Lyme Disease, Thyroid, and more...
Last updated January 1, 2014

Chronic fatigue syndrome has been called a lot of things the past 20 years. Mostly, it has been a stepchild of an illness, maligned or misdiagnosed by doctors, pooh-poohed by employers and neglected by drug makers.

That is beginning to change. The federal government last month launched its first awareness campaign about CFS. The cause is bolstered with new research and millions in additional funds dedicated toward finding a cause and possible cure.

"This isn't hooey," said Dr. William Reeves, chief of the chronic viral diseases branch at the federal Centers for Disease Control and Prevention. "This illness ... was thought to be a bunch of upper-class, yuppie, white women who were whiners. But there is a substantial body of solid, scientific literature accumulating."

Although symptoms can vary among CFS sufferers, their illness is typically marked by aches, fatigue, memory loss and confusion, and insomnia or unsatisfying sleep.

In the parking lot of a Mercy medical building after the annual CFS support group holiday potluck, the impact of the illness was evident. As members prepared to leave, one lay prostrate in her van sound asleep, trying to muster the energy for the drive home less than 10 miles away.

Although adrenaline fuels the spirit of the group on this occasion, members describe an illness that disrupts every aspect of their lives.

"A few days ago, I felt like I had a 100-pound anvil inside me," said Suzy Parker, a former ranch hand and horse trainer from Auburn now relying on disability benefits. "We miss the mingle of a work world. This party is the highlight of my social life."

"When I wake up, I feel like I've been running a marathon," added Jennifer Cox, 29, of West Sacramento. "I feel like Jacob Marley, like I've been carrying chains all my life."

Although researchers have not pinpointed a single cause for chronic fatigue syndrome, they know that at least 1 million Americans have the illness, and that it affects men, women and to some extent children -- regardless of race, ethnicity or economic status.

"Someone who has CFS is as disabled as someone with muscular sclerosis, someone with AIDS or end-stage renal disease," said Reeves, of the CDC. "The others will die from their diseases, but those with CFS are no less disabled."

No blood test or X-ray can detect chronic fatigue, but documented changes in the brain structure, immune system, central nervous system and genetic makeup of CFS patients provide potent clues for unraveling its mysteries.

Those afflicted with CFS are relieved to see that the medical establishment is beginning to believe that their suffering -- long thought to be imagined -- is real.

"We, as people who are at the bottom of the food chain, are at their mercy," said Roseville resident Mike Riley, who has CFS. "But it's probably the most seriously the federal government has ever taken the disease."

Health officials in the United States first took interest in the condition in 1985, after a cluster of people in Lake Tahoe's Incline Village came down with a mysterious illness that featured headaches, sore throats and prolonged fatigue.

Similar outbreaks were reported, including one in Raleigh, N.C., about the same time.

"The entire North Carolina symphony came down with a flu-like illness and several members never recovered from it," said Dr. Charles Lapp, who runs the Hunter Hopkins Center in Charlotte, a CFS clinic, and sits on the federal CFS advisory committee.

Although mononucleosis was suspected, research determined that the virus that causes mononucleosis, Epstein-Barr, was not the sole cause for the patients' long illnesses.

The CDC officially named the malady "chronic fatigue syndrome" in 1988. But the name would be little help to those affected, who continue to suffer in the absence of adequate medical care and lingering skepticism.

Frustrated by the general lack of empathy, people with chronic fatigue often resort to doing their own research on the Internet, and those desperate enough seek unproven therapies.

"I've been fired by doctors," said Arlene Rubb, a 58-year-old Rocklin woman who believes her illness was triggered by an aerobics class and made worse after a car accident in 1982. "We are too hard to treat. We don't fit in a box."

A former hiker who ran a group home and worked as a bookkeeper, Rubb is now disabled. She takes nine medications, including morphine for pain and a stimulant for energy during the day. She requires oxygen while she sleeps, which she does in a reclining chair in her living room.Rubb has lost a lot of mobility and has limited stores of energy. She can barely walk the 50 yards between her home and mailbox. She gets exhausted just talking on the telephone; her neck muscles are so weak that her head hangs down, her chin resting on her chest.

She said she could not manage without the help of her husband of nearly 30 years, Rick Rubb, and others who shuttle her to doctor appointments and pharmacies.

"It's humiliating," she said of the debilitation which, over the years, dashed her dreams of a college education and weighed on her relationships with friends and family.

"I was always a very independent person, and I have reached the height of dependence."

Like most people with CFS, Rubb suffers mentally, too.

"I always had a good memory," she said. "I never had to study in school. Now, I won't drive at certain times. I get lost sometimes, right here in Rocklin."

Dr. Frederick Herman is a Granite Bay physician whose practice welcomed many CFS sufferers before a diving accident forced him to retire his license in early 2005. He said his own battle with fibromyalgia, a related illness, helped him understand patients such as Rubb.

"Physicians are always frustrated by illnesses they can't immediately cure," he said. "If you have an ear infection, an ingrown toenail or pneumonia, you can fix that and go on. You are never trained to just treat symptoms and be a comfort to the patient."

Part of the CDC's awareness campaign aims to change that, said Reeves, with the introduction of a CFS diagnostic tool kit and a push to get medical schools to teach the subject.

The federal government also can point to a growing body of scientific evidence to help sway physicians who still doubt the illness is real.Dr. Anthony Komaroff, a professor of medicine at Harvard Medical School and longtime CFS researcher, cites, for example, some genetic abnormalities in people with CFS. He said he believes the illness requires a genetically vulnerable immune system which is then triggered by certain injuries or infectious agents.

"The immune system becomes engaged in a constant, months and yearslong low-grade war against this foreign infection," he said.

Reeves said the central nervous system -- the brain and spinal cord -- clearly plays a role in chronic fatigue syndrome. He said physical or emotional stress, commonly cited as a condition preceding CFS onset, activates a part of the nervous system involved in the immune system and body's use of energy.

"Do we have a rapidly increasing idea of the pathophysiology of CFS? Yes," he said. "Do we have something amenable to a curative treatment? I am hoping, but I don't have anything now."

For Arlene Rubb and others like her, that means the daily struggle will endure, and the necessary adjustments that make life bearable will continue.

"It has changed everything," she said, but as time goes by you learn how to accept it," she said. "It's the way it is."

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