It is a real diagnosis, says the CDC. We interviewed three experts to find out what primary-care clinicians can realistically do to help these patients.
Chronic fatigue syndrome (CFS) has been in the spotlight recently, thanks in part to media coverage of such celebrities as best-selling author Laura Hillenbrand, soccer star Michelle Ackers, and Olympic speed skater Amy Peterson, all of whom have come forward to publicly discuss their struggles with the disorder.
CFS is characterized by severe and debilitating fatigue that does not improve with rest. Other symptoms include lymph-node swelling, weakness, muscle pain and post-exertional malaise lasting longer than 24 hours. CFS often occurs after a cold, flu, or viral infection. While symptoms may develop during or after a period of severe physical or emotional stress, CFS sometimes comes on gradually, with no clear starting point.
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Although CFS was first identified in the 1980s, its cause is still unknown. For this reason, some have dubbed it “yuppie flu” and dismissed it as being “all in the patient’s head.” Even the CDC has been slow to recognize CFS as a serious disorder deserving of intensive research. In 1999, the CDC admitted that it had used millions of dollars earmarked by Congress for CFS research to fund studies on other conditions.
More recently, however, the CDC has refocused on the issue, promoting CFS awareness among clinicians and the public via a $6-million public-service campaign called “Get Informed, Get Diagnosed, Get Help.” The CDC has also released updated prevalence data suggesting that many more people may suffer from CFS than previously thought.
To learn what primary-care practitioners (PCPs) can do to diagnose and treat CFS, The Clinical Advisor spoke with Jim Jones, MD, research medical officer in the chronic viral diseases branch of the CDC; Alan Pocinki, MD, associate clinical professor of internal medicine at George Washington University in Washington, D.C.; and Larry J. Sharp, DO, of Ft. Worth, Tex. Here’s what they had to say.
Q: Chronic fatigue must be a real syndrome in your mind because you’ve been studying it so long. How did you become interested in it?
Dr. Jones: I came to the CDC after 20 years in academic medicine. During that time, I saw 5,000 patients with CFS. Research I conducted in the 1980s showed that CFS is related to the Epstein-Barr virus, and I’ve been working on the issue ever since.
Dr. Pocinki: I met Dr. Paul Levine at NIH while I was in medical school. At that time, Dr. Levine was studying what later came to be called the “Lake Tahoe outbreak,” a cluster of CFS cases that occurred in Nevada in the mid-1980s. Back then, CFS was a relatively new diagnosis, and it was intriguing to try to figure it out and understand it.
Dr. Sharp: I had been in family practice for two years when my wife and 2-year-old son came down with CFS. At the time, my wife was stressed out from working on a charity ball. When it was over, we were invited to Lake Tahoe to ski. My wife had just stopped nursing our son, and when we got to Lake Tahoe, she caught the virus that was going around, which turned out to be human herpesvirus 6 variant A. When we came home, she had flulike symptoms and swollen glands and was so exhausted, she could hardly get out of bed. My son developed a high fever and roseola. After that, he stopped growing, dropping from the 100th percentile to the 10th. He also developed coordination problems. We began reading about the mysterious Lake Tahoe illness that turned out to be CFS, realized we’d been there two years after the original outbreak, and finally put two and two together.
Q: Why has the CDC decided that CFS is a public-health problem?
Dr. Jones: Because it affects so many people and has a large monetary impact. If one person in a family has CFS, the family experiences an average $20,000 decrease in annual take-home pay. Moreover, 80% of people with CFS have been neither diagnosed nor treated.
Dr. Pocinki: CFS often affects people in the prime of life and takes people out of the workforce. There are also significant costs associated with their medical care. Many other things are difficult to quantify, such as the psychological stress on patients who are told there’s nothing wrong with them when, in fact, there is.
Dr. Sharp: More people are coming down with CFS worldwide, and people are starting to realize how important it is. Twenty-five percent of Japanese living in Japan have a fatiguing illness; scientists are doing a lot of research on it there. A few years ago, investigators at the University of Chicago did a study on CFS. They called 10,000 households and asked, “Are you fatigued?” Those researchers estimate that approximately 5%-10% of the U.S. population has some kind of fatiguing illness.
Q: According to a recent CDC survey, about 1 in 40 adults—7.5 million Americans—meet the CDC criteria for CFS. Do you think that many people really have this disorder?
Dr. Jones: Yes. I don’t find this surprising at all.
Dr. Pocinki: That seems a little high to me. A recent study in Nigeria found that approximately 0.6% of the population met the criteria for CFS. Those estimates were similar to previous estimates in the United States. Remember, we still have disagreements about case definition. Any estimate is ballpark.
Dr. Sharp: Yes, I believe millions are affected. The medical establishment has downplayed CFS. It’s important that more clinicians get educated about it.
Q: Why are some clinicians still skeptical about CFS?
Dr. Jones: Clinicians are trained to think that if they can’t identify a specific physical problem, they’re seeing a somatoform disorder. CFS patients tell me, “My doctor doesn’t believe in it.” That boggles the mind because medicine is generally not associated with belief systems but with empiric fact. Our research puts numbers on CFS that are well-studied and reproducible.
Dr. Pocinki: Tradition is such a strong force in medicine. It’s hard to get some clinicians to believe in new diseases. However, we can now point to several thousand studies done at major universities for validation.
Q: Which patients are at risk?
Dr. Pocinki: Many people who develop CFS have joint hypermobility and autonomic dysfunction, meaning they don’t self-regulate their heart rate and BP and, as a result, experience more fluctuations than most people. Their bodies also tend to make extra catecholamines. We don’t yet understand why some parts of the immune system are up-regulated and some parts are suppressed in these patients. It may be that ongoing physical or emotional stress increases a person’s susceptibility to CFS, and then a final trigger occurs, after which patients have an acute onset.
Dr. Sharp: CFS doesn’t have age or socioeconomic parameters, but it does occur more often in women than men (at about a three-to-one ratio). There are a couple of theories about this. A chromium-tagged RBC analysis will show that CFS patients have lower-than-average blood volume. And, generally speaking, women have lower blood volume than men, so that could be a setup for developing CFS. Female hormonal fluctuations may also play a role.
Q: How is CFS diagnosed?
Dr. Jones: It’s a diagnosis of exclusion. You must rule out other causes of fatigue and try to find an underlying cause. It’s important to know that a number of infectious agents can trigger CFS. The primary ones include, among others, Q fever (a zoonotic disease caused by Coxiella burnetii, a bacterium that is distributed worldwide), Epstein-Barr virus, and Ross River virus, which is transmitted by arthropods, such as mosquitoes and ticks, and is the most widespread arboviral disease in Australia.
Dr. Pocinki: It is a fairly straightforward diagnosis—six months or more of fatigue that disrupts a person’s life, with all routine tests negative. Specific tests to rule out other problems include complete blood count, erythrocyte sedimentation rate, blood glucose level, thyroid-stimulating hormone measurements, a chemistry panel, urinalysis, and testing for antinuclear antibodies (to check for lupus), rheumatoid factor, HIV, Lyme disease (if the patient has been exposed to ticks), and TB. You may also want to do a sleep study, since many people with CFS have sleep apnea.
Dr. Sharp: Cognitive problems are often what bring people in. If such problems are associated with other symptoms, they may be an important diagnostic clue.
Q: What’s the best way to treat CFS?
Dr. Jones: First, find out which symptom is causing the most trouble. If it’s fatigue, ask, “What does fatigue mean to you?” Four things tend to come up—sleep difficulty, nonrestorative sleep, flulike malaise (in which patients’ limbs feel leaden and they have muscle aches), and feeling sad and down. In such cases, it’s important to make sure the patient does not have a bona fide sleep problem, an underlying issue (like thyroid disease), or depression. Once those causes are ruled out, patients need to be taught how to cope with their CFS. A large part of this is helping find the right balance between staying physically active and overdoing it. Patients who have been ill and inactive with CFS must re-educate their bodies by starting exercise at a low level and periodically increasing it by 5%-10%.
Dr. Pocinki: Very few treatment studies have been done on CFS. What we do is based on clinical experience. I try to improve sleep and treat pain first. Pain contributes to fatigue and disrupts sleep. I also treat depression, if warranted, usually starting with pharmacologic therapy since CFS patients often lack the energy to undergo psychotherapy. I might refer patients to mental-health professionals more frequently if I could find therapists who offer cognitive-behavior therapy (a type of therapy that helps patients recognize distorted thinking and replace it with more realistic ideas) because it provides ways to cope with chronic illness.
When I prescribe medication for CFS, I try to kill two or more birds with one stone. For example, a drug like pregabalin (Lyrica) improves sleep, reduces pain, and provides some mood stabilization. Duloxetine (Cymbalta) improves mood and pain and sometimes boosts energy. Amitriptyline (Elavil) and cyclobenzaprine (Flexeril) can help with both pain and sleep. Some benzodiazepines have muscle-relaxant and sedative properties that can aid sleep. Most CFS patients are also chronically dehydrated, so we tell them to increase their salt and fluid intake.
Although a number of CFS patients say they can’t exercise, doing so can make a huge difference. You may have to start them with exercises they can do flat on their backs. Later they can exercise while sitting in a chair. Then they can move on to walking, increasing their time by 15 seconds every few days. A physical therapist can help patients develop an appropriate program.
Dr. Sharp: My first visit with a new patient takes about two hours. At that time, I take a full medical history, do a thorough physical exam, draw blood, and start working out a treatment plan, which often involves helping the patient sleep and manage pain better. Many CFS patients also have irritable bowel symptoms. If that is the case, I may put them on digestive enzymes, nutritional supplements, B vitamins, magnesium, probiotics, fish oil, and antioxidants.
Q: How many people recover from CFS?
Dr. Pocinki: With treatment by a competent clinician who knows about CFS, the prognosis can be good. About 14% of CFS patients are disabled long-term. That’s a small number, not the overwhelming majority. I have many patients who are substantially recovered and working part-time, dealing with their kids, and so on. They may have to rest one day a week, but they have a reasonable quality of life.
Dr. Sharp: It depends on how long they’ve been sick. The longer a patient has been ill, the harder the recovery. I’ve seen people who have been sick for 20 years who are doing fine, but it takes a lot of work. My wife and son are both better. My son is a junior in college, and my wife is able to do some work. But they have to be careful. If they overdo it, they end up back in bed.
Q: What is the difference between CFS and fibromyalgia?
Dr. Pocinki: CFS patients are generally not clinically depressed, while depression is almost a requirement for fibromyalgia. Fibromyalgia is also characterized by “tender points”—specific places on the body that are exceptionally sensitive to the touch. However, I do think CFS and fibromyalgia are related. About 35% of patients have both conditions, and it may be that people who have lax joints are set up for fibromyalgia and CFS. In both cases, there are micro-tears in muscles around the joints that cause the muscles to tighten up and joints to lock. Patients can get into a cycle of pain, poor sleep, and depression.
Q: How can patients avoid “post-exertional malaise” while still maintaining appropriate activity levels?
Dr. Pocinki: The golden rule is, “Do as much as you can each day without overdoing it.” If patients have been sick for a while, they know when to stop. I often advise patients to do aerobic exercise one day and isometrics the next. Exercise is critical. Improving muscle tone is the key to reducing pain. It is remarkable how many CFS patients manage to stay optimistic when they’re sick. The ones who wallow and sit around feeling sorry for themselves do not get better.
Q: At what point should CFS patients consider applying for disability benefits and what is the PCP’s role in helping them obtain such benefits?
Dr. Pocinki: Patients who cannot continue working should apply for disability. There are Medicare guidelines that must be followed. Most of the time, patients need the guidance of a disability attorney who knows the system. PCPs need to know that Medicare will want to see a sleep study and a tilt-table test to determine a person’s susceptibility to neurally-mediated hypotension. Most people will be denied disability benefits one or more times and will have to appeal.
Dr. Sharp: I spend a lot of time with disability issues. If a patient is telling me all he or she can do is get through work, go home, and go to bed, it’s time to think about disability.
