Chronic fatigue syndrome remains misunderstood and understudied. Psychologists are among those trying to change that.
By Kirsten Weir
October 2014, Vol 45, No. 9
Print version: page 66
Chronic fatigue syndrome remains misunderstood and understudied. Psychologists are among those trying to change that.
The fight against breast cancer is famously symbolized by a pink ribbon, heart disease a red one. Officially, chronic fatigue syndrome (CFS) is marked by a blue ribbon. But a question mark would make a better logo.
Scientists don’t know exactly what causes it. There is no definitive diagnostic test and no cure. And because of those and other factors, many people — including health-care providers — are dismissive of CFS, even though more than one million Americans are thought to suffer from the disease, according to the Centers for Disease Control and Prevention (CDC).
“This is clearly an illness that’s born from a biologic cause,” says Nancy Klimas, MD, who directs CFS and Gulf War Illness research programs at Nova Southeastern University and the Miami VA Healthcare System. “It’s a chronic, serious illness, and patients will only respect the providers that acknowledge that.”
Now, slowly, researchers including psychologists are learning more about the roots of the disorder, and how they can best help patients deal with its debilitating effects.
Fatigue and fury
Some features of CFS are clear. It is more common among women and most often strikes in middle age. Still, anyone can get it and at any age. It affects people of all socioeconomic levels and has been identified in various racial and ethnic groups.
Fatigue is just one symptom associated with the disorder. Others include memory and attention problems, muscle and joint pain, sore throat, tender lymph nodes, stomach problems, unrefreshing sleep and “post-exertional malaise” — a worsening of symptoms following mental or physical exertion, lasting more than 24 hours.
Misconceptions about chronic fatigue syndrome begin with its very name, says Leonard A. Jason, PhD, a DePaul University psychologist who studies the condition. Until the CDC renamed the disorder in 1988, it had been known as myalgic encephalomyelitis (the term “myalgia” is used to describe muscle pain, while “encephalomyelitis” refers to inflammation of the brain and spinal cord). To many patients, the name change was an insult. Fatigue is a widespread feeling, Jason says, and many patients feel that characterizing the illness around this one symptom trivializes it. Not only is fatigue a symptom of diseases as diverse as depression, cancer, multiple sclerosis and rheumatoid arthritis, even healthy people can feel fatigued.
But people with CFS aren’t just tired. They are often completely incapacitated by the disease.
That distinction gets lost in the name, Jason and colleagues have found. In one study, they asked undergraduates and medical students to answer some questions about the disease. Students asked about “myalgic encephalopathy” were more likely to attribute a biomedical cause to the disease than were students asked about “chronic fatigue syndrome,” who tended to consider the condition psychological (Journal of Health Psychology, 2001).
The name change is just one event in a series of bureaucratic twists that have hindered funding for CFS researchers and kept patients from quality treatments. The CDC’s criteria for patients to be diagnosed with the disease went from eight symptoms in 1988 to four out of eight in 1994. In 2005, the CDC broadened the criteria again, with efforts to assess symptoms, disability and fatigue.
With a case definition that increasingly lacks specificity, people with other diseases could be incorrectly diagnosed with CFS, Jason says. In fact, he and his colleagues applied the CDC’s 2005 case definition to patients with major depressive disorder and found that 38 percent of them would be misclassified as having CFS using those criteria (Journal of Disability Policy Studies, 2009).
The increasingly loose definition has taken a toll on the quality of CFS research, since people who don’t actually have CFS are likely to be included in study groups. “Some have the illness and some don’t. It’s very hard to make sense of the data, and [researchers] can’t replicate findings across laboratories,” Jason says.
Although international teams of clinicians and researchers developed two new consensus-based case definitions of CFS in 2003 and 2011, neither was endorsed by the CDC. Now, the Institute of Medicine of the National Academies has appointed a committee to develop an updated definition and consider a possible name change. Meanwhile, the National Institutes of Health Office of Disease Prevention is also developing updated disease criteria through its Pathways to Prevention program.
As the confusion lingers, patients are still having trouble getting friends, family and even their own physicians to take their symptoms seriously, Jason says. “Patients are absolutely furious.”
They’re also “terrified, devastated and desperate,” says Anna Zapp, a 66-year-old Colorado resident who was diagnosed with CFS in 2006. “Every aspect of my life was changed — or ended abruptly — eight years ago,” she says. She saw doctor after doctor without answers before finally recognizing her symptoms in a report about CFS on the evening news. Even now, some doctors simply won’t see her since they just don’t know enough about treating CFS, she says. “We feel totally alone … misunderstood and hopeless.”
Seeking a cause
Klimas witnesses this anger and frustration time and again in her work treating and studying CFS patients. Each week she hears another story of a physician who told a patient the symptoms were all in his or her head.
Klimas discovered just how contemptuous some health-care providers are about CFS almost by accident. Following Hurricane Andrew in 1992, she and her colleagues launched a study to investigate whether post-traumatic stress disorder (PTSD)was more common among people with chronic diseases. As expected, she found higher rates of PTSD in people with chronic illness, including among people with chronic fatigue syndrome (Psychosomatic Medicine, 1995).
Yet compared with people with other chronic diseases, CFS patients, even those who hadn’t lived through the trauma of a hurricane, had notably higher PTSD rates, she found. Digging deeper, she found that CFS patients had actually been distressed by their medical experiences.
“A common theme in the trauma was an exposure to a health-care situation that was demoralizing and demeaning,” she says.
That discovery pushed her to focus her career, in part, on studying CFS. “It was a pivotal moment for me. In a culture where we’re supposed to ‘first do no harm,’ we saw harm happening time and time again by doctors who tried to put it back on the patient.”
Klimas understands why her colleagues can be dismissive. “The reason why primary-care doctors still look at our patients and don’t believe they’re ill is because [researchers] haven’t told them otherwise,” she says. “It’s not in their textbooks.”
One big reason for that? Money. The NIH spends $5 million per year on CFS research — compared with $3 billion for HIV, which also affects about one million Americans. Some CFS researchers are now trying to raise funds through crowdsourcing. “We’re trying to propel a field forward on a shoestring,” Klimas says.
Shallow pockets aside, she and her colleagues are making some progress toward understanding the processes underlying the disease. Many people first develop CFS symptoms after a viral infection. For a time, scientists thought it might be caused by Epstein-Barr, the virus that causes mononucleosis. Later, a virus known as XMRV became the prime suspect, but that theory, too, was disproven.
Recently, a group of viruses called enteroviruses have come under suspicion. John Chia, PhD, an infectious disease specialist in California, found evidence of those viruses in more than 80 percent of people with CFS but in only 20 percent of controls. At least some subset of CFS patients may have a chronic low-level infection in their guts, Chia suggested (Journal of Clinical Pathology, 2008).
Yet many scientists now think that the problem isn’t necessarily a single virus but rather the immune system that’s supposed to keep those pathogens in check. While most people host countless dormant viruses from childhood without getting ill, CFS patients may react to them since two types of their immune cells — known as natural killer cells and T-cells — seem not to function properly, Klimas says. Immune dysfunction, then, might be to blame for the complex mix of symptoms common to CFS.
Other researchers are trying to understand the cognitive difficulties brought on by the disease. Marcie Zinn, PhD, a neuropsychologist and research consultant at Stanford University, is one of them. She also has CFS.
“Most people with chronic fatigue syndrome list cognitive impairment as the most debilitating symptom, over and above fatigue,” she says. She has personally experienced problems with memory, attention, processing speed, language comprehension and word-finding abilities, among others.
Zinn’s team has started using EEG and a related neuroimaging tool called eLORETA to study electrical activity in the brains of people with CFS. Her hope is that such scans could eventually play a role in confirming CFS diagnoses or monitoring disease progression and response to treatment.
In studies being prepared for publication, Zinn and her colleagues found that one type of brain electrical activity, “peak-alpha frequency,” was reduced in people diagnosed with CFS compared with healthy control subjects. Peak-alpha frequency has been associated with cognitive performance, including the types of cognitive problems that occur in CFS.
Zinn also discovered that people with CFS have excessive delta waves over much of their brains during periods of wakefulness. Those slow waves are more typically associated with sleep. Like a car stuck in first gear, CFS brains seem unable to shift into higher-level functioning.
For Zinn, the take-home is simple: It’s time to give up the idea that CFS is a psychosomatic disease, she says. “We’ve shown people actually do have brain fog.”
Other researchers have also begun pinpointing brain differences associated with CFS. Andrew Miller, MD, at Emory University School of Medicine, and colleagues recently used fMRI to measure activity in the brains of CFS patients. They found reduced activity in the basal ganglia, structures that are involved in motor control as well as cognitive function (PLOS ONE, 2014).
Interestingly, the basal ganglia are also targets for inflammation in the brain. The fact that the structures appear to function abnormally in CFS patients supports the theory that an immune response underlies the disease, the authors report.
Treating the symptoms
Until the big-picture view of CFS comes into focus, doctors can only manage the disease by treating symptoms individually. CFS patients tend to have low blood volume, for instance. That can be treated with electrolytes — found in products as commonplace as Gatorade — to increase blood volume, preventing wild swings in blood pressure. Medications can help modulate patients’ off-kilter immune systems and steady their erratic heart rates. Behavioral changes can help address sleep difficulties.
Cognitive-behavioral therapy can also help someone with a chronic illness better manage that disease, Klimas says. “Certainly this is an illness that requires some coping skills.”
Indeed, studies have shown that cognitive-behavioral therapy can benefit CFS patients. One of the most notable was a large study in the United Kingdom called the PACE trial. Peter D. White, MD, at Queen Mary University of London, and colleagues reported that graded exercise therapy and cognitive-behavioral therapy could be effective treatments for CFS.
Other researchers have been critical of that trial, however. A number of experts have taken issue with the authors’ definition of recovery, Jason says. Further, he adds, the researchers used a broad case definition of CFS and likely included people who actually suffered from depression. “We know that cognitive-behavioral therapy is one of the best treatments for major depressive disorder,” Jason says, so you’d expect them to improve following the treatment. Incorrectly including those people in the study could have skewed the results.
In Jason’s view, it’s dangerous to promote cognitive-behavioral therapy as a cure for CFS. “We have to be very careful. The patient community generally has a strong disdain for most psychologists because they feel they’ve been blamed for their own problem,” he says. “One of the most common treatment approaches is to convince patients that they’re not sick.”
Zinn is also wary of cognitive-behavioral therapy — or any therapy that attempts to treat CFS as a psychological phenomenon. If a therapist tries to tell people with CFS that their dysfunctional thinking is causing the disease, she says, “They will walk out the door and not come back.” Such a scenario can be particularly harmful, she adds, if it prevents patients from seeking the help they need.
Yet some research suggests that with a compassionate approach, cognitive-behavioral therapy can be helpful for CFS patients. In one example, Michael Antoni, PhD, a psychologist at the University of Miami, and colleagues assessed whether a cognitive-behavioral stress management technique could benefit patients with CFS. After a 12-week intervention, patients reported less stress, greater quality of life and a decrease in the severity of their CFS symptoms compared with CFS patients in a control group (Journal of Psychosomatic Research, 2010).
Carollynn Bartosh, 54, says that while behavioral therapy has not improved her CFS symptoms, it helped in other ways. Since her diagnosis a decade ago, she’s had to cope with countless losses, she says — from small (the inability to hike near her California home) to immense (the loss of a successful career in marketing and public relations). “The two biggest losses I still feel are that sense that I can make something happen through tenacity and the ability to use my brain at high levels every day,” she says. In fact, Bartosh had been seeing a psychologist for cognitive-behavioral therapy for years before she got sick. “Therapy helped me understand that I was not becoming depressed but becoming ill,” she says.
While she stresses that such therapy is not a cure, she has found that the therapy, along with mindfulness and meditation practice, helped her make peace with the profound changes. “The life and communication skills I learned through CBT have helped me to be a better advocate since I became sick,” she adds.
Psychologists can also help patients learn to pace themselves — a task that’s trickier than it sounds. “They’ll wake up one day feeling halfway decent, and by lunchtime, they’ve ruined it. They’ve pushed all the way through to the edge of their energy and crashed,” Klimas says. “Had they learned to pace it, they might have had a decent month.”
Given all the misconceptions, baffled physicians and public stigma, it’s no wonder that CFS patients are fed up.
“We as psychologists have a tremendous amount to contribute” to the CFS community, Jason says. “But it has to be an appropriate role. We can’t further stigmatize these patients
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