According to the Centers for Disease Control and Prevention, chronic fatigue syndrome affects between 1 and 4 million Americans. At least one fourth of these are unemployed or on disability because of CFS. Yet according to the CDC, only about half of those thought to suffer from CFS have consulted a physician for their condition.
Primary symptoms include unexplained fatigue for six months or more, in addition to any number of the following: cognitive dysfunction, postexertional malaise lasting more than 24 hours, unrefreshing sleep, joint pain without redness or swelling, persistent muscle pain, headaches of a new type or severity, tender lymph nodes, and sore throat. There are more than a dozen other less common symptoms.
Health plan medical directors find the situation vexing. “Like all managed care organizations, Independence Blue Cross struggles with establishing appropriate coverage policies and clinical programs to address conditions in which there is considerable clinical controversy,” says Donald Liss, MD, the plan’s senior medical director of clinical programs and policy. “Conditions such as chronic fatigue syndrome are particularly challenging because of the nonspecific nature of the diagnostic criteria, the lack of objective studies to confirm a diagnosis, and the wide spectrum of therapies prescribed.”
Clinical executives aren’t the only ones frustrated, says Robert McDonough, MD, the head of clinical policy research and development at Aetna. “Treating physicians are struggling to come up with cures,” says McDonough.
In addition, medical directors must consider the role medication should play. “Many of these people have concurrent psychiatric disorders such as anxiety and depression,” says McDonough. “It’s not that chronic fatigue syndrome is caused by depression or anxiety, but depression and anxiety frequency coexist, and treatment of these psychiatric problems will better enable the patient to cope with the chronic fatigue syndrome.”
It has been estimated that more than 800,000 adults suffer from CFS in the United States. The annual direct cost could be more than $8,000 per patient, with the total direct cost to society as high as $7 billion.
According to Charles W. Lapp, MD, at Hunter-Hopkins Center in Charlotte, N.C., most people who complained of the symptoms of CFS before it was officially defined in the late 1980s “were considered to be hypochondriacs or crazy, because there are so many symptoms and so many systems involved.” Lapp specializes in treating CFS.
What got people interested in it again were several outbreaks in the early 1980s, including one in Lake Tahoe that got a lot of attention. “It was written up in Rolling Stone magazine and labeled the ‘yuppie flu.’” This was right after AIDS was identified. “As a result, the CDC became very interested, wondering if it was ‘AIDS Minor.’”
McDonough says that, as of right now, CFS is a “diagnosis of exclusion,” meaning that it can be made only after other medical and psychiatric causes of chronic fatigue have been excluded.
“The CDC recommends performing a thorough history and physical and some basic laboratory tests to rule out other common causes of chronic fatigue,” he says. “These include a blood count with differential, an erythrocyte sedimentation rate, a chemistry screen, and a thyroid stimulating hormone level. Additional testing may be necessary based on the history and physical and basic laboratory tests. It is only after a negative workup for other common causes of chronic fatigue that you would come to the conclusion that someone has chronic fatigue syndrome.”
While there are no formal diagnostic methods, there are criteria that are based on subjective symptoms, according to Tanya Edwards, MD, medical director of the Center for Integrative Medicine at the Cleveland Clinic. The primary symptom is unexplained, persistent, or relapsing fatigue for at least six months. Then, four or more of eight additional symptoms must persist or recur during six or more consecutive months and not predate the disease. These are:
McDonough says that, “They usually have been very highly functioning individuals, and then something happens, sometimes an infection, and they’re suddenly wiped out. It’s like they’re struck down.”
According to Edwards, before making a CFS diagnosis, physicians should first check for an untreated low-grade infection, which can have similar symptoms. There is also significant overlap with fibromyalgia.
At Capital District Physicians’ Health Plan (CDPHP), the thinking is that CFS, as defined in the scientific medical literature, is a real syndrome, and the plan does cover evidence-based care. “We treat this the way we would any other condition, in that we make sure the diagnosis has been appropriately made and that the proposed treatments fall within the scope of what the scientific literature supports,” explains Clifford R. Waldman, MD, senior medical director.
There have been some studies of medications specific to CFS. Currently, though, the plan pays for drugs that are designed to treat the symptoms, such as antidepressants, pain medications, and sleep medications. “One thing we realize is that because a drug is labeled an antidepressant doesn’t mean that it only treats depression,” he continues. “For example, antidepressants will alter sleep patterns. As a result, they have functionality in treating a number of different things, including a number of different chronic pain syndromes.” Thus, he notes, even though it isn’t fully understood how they work, there are some studies showing the effectiveness of antidepressants for CFS.
Waldman says it is important to be sure that the people treating CFS be qualified and use scientifically-based treatments. “It is always important to identify instances of either the use of treatments that are not scientifically supported or overuse of treatments that are scientifically supported.”
In fact, he says, this is an area that can be subject to abuse. “One concern we have is that it is very easy for a provider to treat CFS with alternative treatments, without scientific evidence, and to end up with anecdotal evidence that they are working,” he states. “After that, they continue these treatments, claim expertise in the field, and encourage people to come to them, even though they don’t have any studies to show that what they are doing is effective.”
It’s crucial for clinical executives to follow an evidence-based approach, says McDonough. “We’re continuing to follow the medical literature on chronic fatigue syndrome. The hope is to better elucidate the cause of this condition, whether it is infectious, immunologic, neurologic, psychological, or of some other etiology. Knowledge of the cause of chronic fatigue syndrome will lead to more effective treatments.”
For Health New England, though, CFS coverage is a bit more sticky. Is CFS a legitimate diagnosis? “Sort of,” replies Thomas Ebert, MD, vice president and chief medical officer. “It is a legitimate condition from the perspective that it is a diagnosis, and that there are codes,” he explains. “It is also linked to fibromyalgia and certain chronic viral conditions.”
Unlike diseases that have very specific laboratory or clinical descriptors that can be used to make a diagnosis, it is more difficult with CFS, where there are fewer of these kinds of markers, Ebert says. “This is one reason these patients are difficult to treat, and it is difficult to affect the course of the illness,” he adds.
As a result, there has been a lot of epidemiologic work done on patients with CFS, who often have gone from doctor to doctor and had relatively high use of the health care system.
“Because of the chronic nature of CFS, this is usually not the kind of patient that does well seeing primary care physicians who are scheduled to see patients every 10 to 15 minutes,” Ebert explains. “As a result, these patients often end up going to specialists, and often lend themselves to receiving a team approach to care, including clinical medicine and behavioral health.” In some cases, though, Ebert says, the patients just learn to live with what they have.
So does Health New England consider CFS a legitimate diagnosis? “It is less important for us to consider it than it is for our network providers to consider it a legitimate diagnosis,” he replies. “It usually doesn’t rise to the level of a disease state where we dedicate a lot of resources, so there won’t be a disease management program, as there would be for people with chronic diseases.” However, he adds, some patients with CFS may end up using some of the health plan’s case management services intermittently.
In Ebert’s experience, some patients may also want to see physicians who are not in the health plan’s network. “My experience is that they don’t have any more success when they go outside the network than when they stay in the network.”
The condition is probably legitimate, he adds, but with caveats, because there are people who have many symptoms or complaints, not all fitting CFS. “However, let’s say that we have a cohort of people who meet these conditions for the long term. This subset seems to be real. These are people who have symptoms that clearly interfere with their lives, families, and work.”
These people do tend to use a fair amount of medical services for a while. “After that, though, they tend not to, because they don’t get cured, so they just try to learn to get along,” he continues. “This is what drives them to seek providers outside of the network, including alternative care providers.”
In such cases, Health New England denies coverage, except in cases where a primary care physician or specialist in the network advocates sending the person outside the network. “If this is the case, we generally support it,” he states. “If the care they receive outside the network isn’t any more helpful than the care they got inside the network, they probably aren’t going to use much of that out-of-network care anyway.”