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Studies published in 2015 shed new light on chronic fatigue syndrome (CFS) and, thus, chronic fatigue syndrome treatment. The condition, known medically as myalgic encephalomyelitis (ME), appears to be a biological disorder, not a psychological issue, as determined in multiple studies, including recent work by scientists at Columbia University and the Institute of Medicine.
Thus far, CFS has been frustratingly difficult to diagnose. At worst, CFS can become incapacitating for those who experience it. What does it feel like? A New York man in his 40s who developed CFS in 2009 described it like this for CBS News: “…It’s like the worst type of fatigue you could ever feel. If you’re holding up a cellphone, your arm feels like you’ve been using weights for hours, even though you’ve only been holding it for five minutes.”
The condition affects between 836,000 and 2.5 million people in the United States alone, according to the Institute of Medicine (other sources put the estimate as high as 4 million). CFS tends to hit people in their 40s and 50s; women are more susceptible than men.
And it’s not a cheap ordeal. According to the Institute of Medicine report, the direct and indirect economic costs of chronic fatigue syndrome range between $17 billion to $24 billion annually ($9.1 billion of which is attributed to lost household and job productivity).
The Columbia University Study
One breakthrough CFS study appeared in the Feb. 27, 2015 issue of Science Advances. The report indicated chronic fatigue syndrome may be the result of a malfunctioning immune system. According to the research, the immune systems of chronic fatigue syndrome patients appear to be unable to control the response to an infection that has passed.
Instead, according to Dr. Mady Hornig, lead author of the study, the immune system produces large amounts of cytokins. Cytokins are chemical “messengers” that coordinate the response of the immune system’s cell types. Hornig is the director of Translational Research at the Jerome L. and Dawn Greene Infectious Disease Laboratory at Columbia University’s Mailman School of Public Health in New York City.
The immune system of CFS patients “is no longer resilient and able to bounce back after this cytokine surge,” wrote Hornig, “We need the system to be regulated, so it shuts off after the disease is gone, and that isn’t happening here.”
Because of the research, physicians now can look for increased levels of cytokins in the blood of patients who might have chronic fatigue syndrome, potentially aiding in their diagnosis, Hornig said. As a result, she added, “we may be able to reduce the time it takes to get a diagnosis and reduce the time it takes to get treatment.”
The Institute of Medicine Study
The Translational Research study came on the heels of the Institute of Medicine (IOM) report, which in January 2015 summed up chronic fatigue syndrome as a “legitimate illness”—rather than an emotional problem—that should be treated by doctors as a disease. The IOM committee, an independent panel of experts assembled by the U.S. government, wants to give chronic fatigue syndrome a new name, in order to better describe it: “systemic exertion intolerance disease.”
The IOM panel also provided a list of five chronic fatigue syndrome symptoms that define the illness. The first three are “core symptoms”:
- Impaired ability to engage in pre-illness levels of activities that persists for more than six months and is accompanied by often-profound fatigue.
- A worsening of these symptoms after any type of exertion, including physical or mental exercises or emotional stress.
- Sleep that does not alleviate fatigue.
A patient with those three symptoms plus one of the following two would be diagnosed with CFS:
- Impaired ability to think.
- The inability to remain upright, with symptoms that improve when lying down.
The IOM also noted that a diagnosis depends on the persistence of these symptoms (six months or more) as well as its severity (the patient should experience them in moderate to severe intensity at least half the time).
Chronic Fatigue Syndrome: Treatment and Management
Despite the findings presented by these and other studies, there is still no definitive lab test or biomarker that identifies chronic fatigue syndrome. Complicating CFS diagnosis is the fact that its symptoms can be common to other illnesses. Furthermore, CFS tends to have a pattern of remission and relapse, making it still harder to diagnose.
Even so, experts maintain that any chronic fatigue syndrome treatment strategy should first address the illness’s most disruptive symptoms. Typically, that means tackling the following issues.
Sleep problems: Poor sleep is a symptom—and maybe a cause as well—of chronic fatigue syndrome. Most CFS patients have some form of sleep dysfunction, according to the Centers for Disease Control and Prevention (CDC), whether it’s difficulty falling asleep every night, hypersomnia (extreme sleepiness), frequent awakening, intense and vivid dreaming, restless legs, and nocturnal myoclonus (night-time muscular spasm). Adopting positive sleep habits is key to resolving these symptoms. The CDC says patients should try these eight techniques:
- Establish a regular bedtime routine.
- Avoid napping during the day.
- Incorporate an extended wind-down period.
- Use the bed only for sleep and sex.
- Schedule regular sleep and wake times.
- Control noise, light, and temperature.
- Avoid caffeine, alcohol, and tobacco.
- Try light exercise and stretching earlier in the day, at least four hours before bedtime, because this may also improve sleep.
If those steps aren’t effective, your physician may recommend sleep medications—initially simple antihistamines or over-the-counter sleep products. The next step, if needed, might involve a prescription sleep medicine in the smallest possible dose and briefest period possible.
Pain: Deep pain in joints and muscles as well as headaches can affect CFS patients. Such pain-reliever medication as acetaminophen, aspirin, or ibuprofen may help, but if they’re ineffective, your physician may refer you to a pain specialist for additional therapy.
“Pain management should also include stretching and movement therapies, gentle massage, heat, toning exercises, hydrotherapy (water therapy for healing), and relaxation techniques,” according to the CDC. “Acupuncture, when administered by a qualified practitioner who is knowledgeable about CFS, may be effective in relieving pain for some patients.”
Memory and concentration problems: CFS patients often report an inability to concentrate along with cognitive issues. Meditation exercises and therapy can help, as well as organizers, schedulers, and written reminders. Stimulating the mind with word games, puzzles, cards, and other activities that require focus also may help.
As for medications, the CDC warns that “health care professionals should use caution in prescribing stimulants for cognitive problems. Mild stimulants may be helpful for some patients, but stronger stimulants can lead to the push-crash cycle—do too much, crash, rest, start to feel a little better, do too much once again, and so on—and cause relapse.”
Depression and anxiety: A debilitating illness may cause depression in chronic fatigue syndrome patients, and while it can and should be treated, it won’t cure CFS. Antidepressant drugs should be prescribed with caution; some types can exacerbate CFS symptoms and produce side effects. There are brief psychiatric screening tools available that can be given and scored in the primary care setting, such as the Beck Depression Inventory. Results of these screening tools may point to a possible underlying depression or other psychological disorder that may warrant a referral to a mental health professional.
Deep breathing, muscle relaxation techniques, massage and healing touch, and movement therapies (tai chi, yoga, or even stretching) can be beneficial for some CFS patients in relieving stress anxiety. (See also our post “How to Stop Depression: What’s Good for the Body…“)
Dizziness and lightheadedness: Some CFS patients also experience what’s called orthostatic instability—a condition by which symptoms, particularly frequent dizziness and light-headedness, are triggered or made worse when a person stands upright. If your physician deems symptoms severe enough to require further analysis, he or she may refer you to a cardiologist or neurologist. Treatments for orthostatic problems include volume expansion for CFS patients who do not have blood vessel or heart disease. If symptoms do not improve with increased fluid and salt intake, prescription medications and support stockings can be prescribed.
Chronic fatigue syndrome treatment, of course, must be tailored to each individual patient’s symptoms. Patients respond differently to various treatment strategies, which is why participation is key: The more involved the patient becomes in his or her treatment, the better chance he or she has to overcome the disease.
Originally published in May 2016 and updated.