Chronic Fatigue Syndrome Patients Grow Weary of Doubt

Nov. 29, 2010— -- Teresa Serice tried to lift her arms. It was her daughter's wedding day, and she needed to get into her mother-of-the-bride dress. She struggled to slip it on as her husband offered to help.

No, she told him. She'd do it herself. And after several minutes, she found the physical strength to put on the dress.

In July of 2007, Serice's life came to a standstill when she began suffering from a degree of fatigue she had never before experienced. A year later, she was diagnosed with chronic fatigue syndrome, or CFS, a condition that caused basic tasks like laundry and blow drying her hair to leave her exhausted and breathless.

"Walking from my bedroom to my kitchen now can feel like I'm trying to cross the Sahara Desert," said Serice, a 49-year-old resident of Kaiser, Ore.

CFS is a condition associated with prolonged and severe fatigue that is not improved through rest and sleep. Many CFS patients also have brain fog symptoms, described as bouts of unusually poor mental function that includes confusion, forgetfulness and difficulty concentrating.

According to the Centers for Disease Control and Prevention, the causes of CFS are largely unknown, but some possible triggers include infectious agents, immunological dysfunction and nutritional deficiency.

The condition has long been surrounded by controversy. For years, many doctors wouldn't recognize chronic fatigue syndrome as a legitimate disorder. Many CFS patients say they have visited doctors who are totally unaware of the illness. When tested, patients' lab work often comes back clear, and because of this, some doctors have argued that the condition is psychological, not physiological.

In a study conducted by the Centers for Disease Control and Prevention and Emory University School of Medicine, researchers found that CFS was associated with an increased prevalence of personality disorders. Authors also said that personality may be a risk factor for CFS and may contribute to the maintenance of the illness.

"I think that's the biggest bunch of horse hooey I've ever heard," said Serice, who has a master's degree in business administration. "It's insulting. I spent my time, money, and education to get to work at an executive level and it's all been knocked out from under me because I'm tired?"

But Dr. Elizabeth R. Unger, acting chief of CDC's Chronic Viral Diseases Branch and spokesperson for the study, said that personality disorders may not cause CFS but rather, act as a secondary symptom of any chronic or severe disease.

"Other studies have found personality disorders were associated with fatigue and depression, as well as with chronic fatigue syndrome," said Unger. "The objectives of this study were to follow up on previous personality research as well as to describe the prevalence of personality disorders in people with CFS.

CFS Sufferers Struggle With 'All in the Head' Rationale

Twenty-seven-year-old Erin Adams has suffered from CFS for nine years. She missed her entire senior year of high school when she first fell ill to the disease.

"They're focusing on the wrong problem by saying it's all in your head," said Adams, a part-time teacher who lives in Lake City, Fla. "Believe me, if it was all in my head, I'd be so happy. Send me to a shrink and give me some medicine."

Adams said she wishes it was so black and white. It's hard to predict when she'll be feeling well enough to venture outside, she said, or when she'll feel so exhausted that walking to her own bathroom will cause her heart palpitations and weakness.

Because so many doctors told Heather Sparrow, a 24-year-old resident of Farmington, Maine, that nothing was wrong with her, self-doubt began to set in.

"I went through five different doctors and it took ruling out everything," said Sparrow. "It got to a point of thinking, 'OK, is this is my head?'"

Desperate for answers, Sparrow actually went to a therapist to find out if the symptoms were her actually "in her head."

The therapist told her she was fine, but her symptoms worsened.

"I knew that a 24-year-old shouldn't feel like a 94-year old," she said. "I felt really alone. No one knew what I was feeling," she said.

Study Logistics Leave Some Doctors With Questions

In the study, published in the August issue of journal of Psychotherapy and Psychosomatics, study authors examined more than 500 patients from Georgia. More than 100 participants had been diagnosed with CFS, 264 participants had unexplained fatigue without CFS and another 124 healthy participants made up the control group.

Investigators administered the Personality Diagnostic Questionnaire, a survey used by health professionals to screen clients for various personality disorders. Study authors said that 29 percent of participants with CFS had at least one personality disorder, compared with 28 percent of the non-CFS patients and 7 percent of the control group.

"A lot of people cried foul when this study came out, and since then, there has been rigorous debate," said Dr. Nancy Klimas, a professor of medicine, psychology, microbiology and immunology at the University of Miami Miller School of Medicine. "My reaction from my own clinical experience is: no, I don't believe that. My patients tend not to have those [personality] issues."

Klimas explained that extensive scientific research shows that CFS is similar to an autoimmune disorder.

"It's like we're getting slammed back to the 1980s with this article talking about personality disorders and disregarding all the scientific research that has taken place since then," continued Klimas.

Dr. Anthony Komaroff, the Simcox-Clifford-Higby professor of medicine at Harvard Medical School and editor-in-chief of Harvard Health Publications, said CFS first gain substantial attention in the mid-1980s. Komaroff said many doctors thought CFS to be a psychiatric condition.

"It was a reasonable possibility, but over the course of 25 years, there are literally thousands of peer-reviewed papers showing things you can measure in patients that are different from healthy people," said Komaroff. "There is abundant evidence showing that there are objective things to measure that people aren't just imagining being there. There is an underlying biological process."

"I feel bad about this study because these poor patients get nothing but attitude, they're patronized and have a poor standard of care," said Klimas. "It's just not right. They're terribly ill and they deserve better than that. "

Psychiatric Disorders as a Secondary Symptom of CFS

Several doctors did agree that a psychiatric disorder is often seen as a secondary symptom of CFS and other chronic diseases. Komaroff said it's natural for people to develop anxiety and depression after getting sick with a chronic disease, and it shouldn't be confused with a risk factor.

"Having an illness suddenly develop out of the blue, where doctors aren't sure what it is and there aren't standard tests for it will have a psychological effect on the person," said Komaroff. "It would on me."

Dr. Ellen Slawsby, director of pain services at Benson Henry Institute for Mind Body Medicine at Massachusetts General Hospital, said that she does not see as high of a prevalence of personality disorder in her clinic as was found in the study population.

"The depression that I have observed seems to be secondary to the illness setting," said Slawsby. "Many folks are told their fatigue and pain is all in their head, but I always go with the basis that there is something there."

Unger points out that this could be the case in the study's CFS patients.

"It's not clear whether any personality features identified in people with CFS in this study are a result of having CFS or if instead they are a risk factor for developing CFS," said Unger.

And for Sparrow, who was in her 20s with "the world at her feet" when she suddenly became ill, depression came soon after the diagnosis.

"I'm on depressive medication because the illness made me so depressed," said Sparrow. "I don't understand when people say that this is all in my head. Why, when I was 24 years old with the best job I could ask for, would I give it up to be at home alone in my bed?"

Lifelong Enduring

Penny Cowan, executive director and founder of the American Chronic Pain Association, said that it's tough road for chronic fatigue patients because there is no magic pill that will treat the disease and make it all go away.

"CFS has gotten its share of bashing because people don't always believe it," said Cowen, who has suffered from chronic pain for more than 30 years and started the association as a resource for people who share her illness. "There is no 'aha' moment for treating the disease."

"But this is something we have to learn to live with," she continued. "And they aren't able to tell us how to do that."