Thirteen-year-old Anna had been ill for months. The usually cheery middle schooler was dull and listless, plagued by constant migraines and irritated stomach. After the typical culprits of colds and flu, mononucleosis and school or relationship problems had been ruled out, her doctor started a battery of tests to identify the cause, while Anna and her family waited anxiously.
One by one, the results came in:
Food allergy test—negative
And so it went, an ever-growing list of ailments Anna was found not to have. Every screening that came out clear was both a relief and a concern for Anna and her family. They were happy to know that cancer, Lyme disease and multiple sclerosis were not behind the disruption of Anna’s happy life of music, dance and youth group activities. But they felt further and further away from finding the root of her symptoms.
Only after Anna missed several weeks of eighth grade did her physician bring up the possibility of chronic fatigue syndrome. More and more tests confirmed that diagnosis in the only way possible: by eliminating every other potential disease.
Identifying chronic fatigue syndrome (CFS) is difficult because symptoms mimic conditions common to other illnesses—from stomach flu to Crohn’s disease. The Centers for Disease Control and Prevention (CDC) lists eight symptoms of CFS: substantial impairment in shortterm memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern or severity; unrefreshing sleep; and post-exertion exhaustion lasting more than 24 hours. At least four of the symptoms must be present over a duration of six months to qualify as chronic fatigue syndrome.
Anyone can get CFS, but women are four times more likely than men to develop it. Middle-aged adults are especially at risk, but all age groups are affected. Increasingly it is recognized that teenagers can develop the syndrome. DePaul University researchers estimate that 800,000 people in America experience CFS, but the Chronic Fatigue and Immune Dysfunction Syndrome Association of America believes that as many as 90 percent of people who have the syndrome go undiagnosed. The disease is difficult to nail down, and some doctors are hesitant to give a diagnosis of CFS. Some health care providers don’t believe CFS is a legitimate illness, while others search endlessly to find a different explanation for symptoms. But despite difficulties in diagnosis, early detection is as vital for CFS
as it is for other illnesses. The longer CFS continues without attention, the more complicated treatment becomes, and the less likely it is for patients to experience full recovery.
Despite intense research over nearly two decades, the underlying cause of CFS remains unclear. Many different physical and psychological factors have been explored, but so far there is no smoking gun. Nevertheless, most evidence suggests abnormalities in the neurological, immune and endocrine systems of the body. Some evidence points to an infectious agent, but none of the likely culprits investigated—such as the Epstein Barr virus (the cause of infectious mononucleosis) and Candida albicans (yeast)—has been consistently associated with CFS. A subset of patients with CFS does show increased antibodies in the blood for a type of bacteria called C. Pneumoniae, and this group sometimes benefits from antibiotic treatment.
With no clear cause of CFS, to diagnose it doctors must rule out every other cause of the symptoms—meaning lots of tests and examinations, often by specialists. If another disease or illness that could cause such symptoms is present, that illness must be fully treated. Then, if symptoms persist, doctors will consider CFS. Thus, patients must generally wait months before receiving a diagnosis of CFS.
Anna’s diagnosis was, like the weeks of waiting, bittersweet. The constant headaches, brain fog, dizziness and sensitive stomach now had a name, and the frustration of searching for answers could end. However, chronic fatigue syndrome is not an easily treated illness. In fact, the CDC says that there is no cure, and while a few patients will recover and children sometimes outgrow CFS, the vast majority of individuals with CFS never go into full remission.
That is not as bad as it sounds, though. While at its worst CFS can prevent someone from working or carrying on daily activities, the severity of the illness changes from day to day and month to month. Many patients learn to manage their symptoms and avoid bouts of extreme sickness, although figuring out which treatments work and which lifestyle factors trigger the symptoms is sometimes a tricky task.
Treatment of CFS can be tenuous because symptoms vary from patient to patient and may change at any time. For instance, a patient who normally struggles with headaches may suddenly develop severe stomach problems. Researchers still hunt for a cause and a cure, but research dollars are also spent finding ways to manage symptoms of the illness.
Several medications are used to manage symptoms like pain and fatigue, but CFS patients are often very sensitive to medication side effects, so doses must start small and be increased gradually. The most common medications used are non-steroidal anti-inflammatory drugs (NSAIDS) like ibuprofen (Motrin, Advil) and naproxen (Aleve), frequently used to manage headaches and joint pain.
Additionally, low doses of tricyclic antidepressants are sometimes effective for pain and fatigue, not because depression is the cause of CFS, but because these medications improve the quality of sleep and also work to desensitize pain pathways. (They are also used in a wide variety of other chronic pain conditions, especially for pain that results from abnormalities in the nerves.) Examples of tricyclic antidepressants are doxepin (Sinequan), amitriptyline (Elavil), imipramine (Tofranil), desipramine (Norpramin) and nortriptyline (Pamelor). Potential disadvantages of tricyclic antidepressants include side effects such as dry mouth, dry eyes, constipation, urinary retention and dizziness. Also, these medications can be lethal in overdose (the main reason they are rarely used to treat depression these days, as newer medications for depression are safer), so caution must be used in prescribing them for any patient with CFS who has ever had suicidal thoughts.
If fatigue from CFS is severe, it is sometimes treated with low doses of stimulants, which can allow patients with fatigue from CFS to have some productive time during the day for work or school tasks. However, it is important not to over-use stimulants, because if taken in too large a dose or administered too late in the day they can interfere with sleep and exacerbate CFS symptoms. Also, some people experience rebound fatigue when the stimulants wear off. Other possible side effects are loss of appetite, sweating, increased heart rate, anxiety/agitation and a potential for addiction. The non-stimulant medication modafinil (Provigil), a wakefulness drug developed to treat narcolepsy, has also been successful in some trials for treating fatigue from conditions like multiple sclerosis and CFS and may have fewer problematic side effects.
Although infectious causes for CFS have been proposed, there is no good evidence that antibiotics, antifungals or antiviral drugs are of any benefit, and in general they should not be used as a treatment for CFS, unless there is a specifically identified infection superimposed. The exception is the subset of CFS patients with elevated C. Pneumoniae antibodies; some in this group improve with the antibiotic doxycycline.
Additionally, people with CFS have a higher incidence of some other conditions involving the immune and nervous systems—such as migraine headaches, allergy problems, irritable bowel syndrome and depression. These illnesses are often exacerbated by CFS, and vice versa, so a wide range of therapies for these co-occurring conditions is frequently used. Sometimes CFS symptoms improve as well when these other triggering conditions improve, even though treatment isn’t addressing the CFS per se.
In the same vein, CFS accentuates the delicate balance among different parts of one’s body and amplifies the ways the physical, mental and emotional selves are linked to each other. Patients often find that factors such as emotional duress and physical exertion can bring on an episode. Consequently, realistic solutions focus on identifying and addressing all possible triggers, with an eye to holistic health.
Because of the vast interconnection between CFS severity and general well-being, many patients find aid in alternative and complementary therapies. Acupuncture appears to work for some, chiropractic manipulation for others. Although there is a lack of research evidence for the effect of dramatic diet changes, some patients have reported anecdotally feeling better with dietary remedies such as the elimination of processed sugars, artificial additives, wheat, etc. A wide range of herbs and natural supplements are marketed to help with chronic fatigue, including astragalus, borage seed oil, bromelain, comfrey, echinacea, garlic, Ginkgo biloba, ginseng, primrose oil, guercetin, St. John’s wort and Shiitake mushroom extract, although the effectiveness of these preparations has not been verified in controlled trials. It is important for patients to remember that natural does not necessarily mean safe, and herbs can have side effects, produce toxic reactions and cause drug interactions in the same way that prescription medications can. Therefore, it is important that all treatments—including herbal treatments—be undertaken with a physician’s supervision.
Therapies that involve physical activity and relaxation are particularly promising. Physical therapy, massage and self-hypnosis training can bring significant relief. Also, it is important for patients with CFS to maintain a regular exercise regimen, particularly including stretching, and to establish a regular schedule of sufficient sleep.
Peter Rowe, MD, and Rick Violand, PT, at the Chronic Fatigue Clinic at the Johns Hopkins Children’s Center in Baltimore, Maryland, have researched the connection between chronic fatigue and orthostatic intolerance, a group of conditions in which symptoms like low blood pressure, rapid heartbeat, dizziness and fatigue are made worse by upright posture. For patients found to have both chronic fatigue and orthostatic intolerance, Rowe and Violand have noted that learning a series of posture changes and physical maneuvers can help reduce symptoms, mainly through contractions of the leg muscles and abdomen, which increase blood flow back to the heart.
For Anna, very ordinary things can help her feel better. When she has a severe migraine, her parents drive her around the countryside in their car; her scenery changes and she is exposed to daylight without exerting herself or exacerbating her headache. Her physical therapist also showed her how to have someone place their fingertips lightly on her forehead to relieve headache tension.
Patients who have or think they may have CFS should keep an eye on symptoms, noting even apparently unrelated ailments. The elusive illness can bring on a variety of complaints, but being aware of the whole picture is a step toward treatment. Pay special attention to any common thread in symptoms. For instance, are headaches often preceded by sleepless nights? By eating a sandwich? By long exposure to the sun? Do symptoms get worse in the winter? Does a stomachache follow after every trip to the Italian restaurant? Is brain fog worse in the afternoon than the morning?
Although no standardized treatment exists for the syndrome, patients will find that by monitoring symptoms—and the interventions that do and don’t appear to help them—they can learn to manage CFS with a little more accuracy.
by Noelle Kelly
Centers for Disease Control and Prevention www.cdc.gov/cfs