News About Chronic Fatigue Syndrome: We're Making Progress

Dispelling the myth that CFS is “all in your head”

Chronic fatigue syndrome (CFS) is a devastating illness that can interfere with all facets of life. It's not clear how many people suffer from CFS, but a recent estimate suggests the number is between 836,000 and 2.5 million in the U.S. According to the Centers for Disease Control and Prevention (CDC), women are two to four times as likely as men to get a diagnosis of this condition. You might also see CFS called by an older name, myalgic encephalomyelitis (ME), or a combination of the two names (ME/CFS).

Yes, It's “Real”

When we first began hearing about CFS decades ago, many clinicians (doctors, nurse practitioners, physician assistants), and even friends and relatives of people with CFS questioned whether it was a “real disease” or “just a mental health condition” or a “figment of the imagination.” They had a hard time believing that a condition that couldn't be diagnosed with a blood test, x-ray, or physical examination could be real. Diagnosis depended (and still depends) solely on what the patient reports.

Recently the Institute of Medicine (IOM) and the National Institutes of Health took a strong stand on CFS. Based on more than 9000 research studies, these organizations concluded that CFS has a biological basis (occurs because of one or more body malfunctions), declaring it “a serious, chronic, complex systemic disease that can profoundly affect the lives of patients.” They also stated that CFS is not “a psychological problem.”

The studies identified many differences between people with CFS and healthy people or those with other conditions that cause severe fatigue (such as depression or multiple sclerosis). Differences were identified in the brain and nervous system, the immune system (which defends the body against infection), and the endocrine system (which regulates body function through glands and hormones). The IOM also noted that CFS sometimes occurs following infection with the Epstein-Barr virus and possibly infections with other viruses, bacteria, and protozoa. Learning more about these factors may help researcher develop tests for diagnosing CFS, as well as medications and other approaches for treating it.

Diagnosing CFS

A diagnosis of CFS still relies on the patient's description of symptoms. CFS is identified when what you are experiencing matches guidelines developed in 1994. According to those guidelines, you have CFS if, for 6 months, you have had severe, constant, unexplained fatigue that interferes significantly with daily activities and work, and four or more additional symptoms from a list of eight that includes unrefreshing sleep (awakening as tired as you were when you went to bed) and fatigue made worse by exertion.

The IOM proposed a simpler definition for identifying people with CFS, which may become the new standard. If you fit the criteria listed below, if no other cause can be found, and if the problems are moderate, substantial, or severe and happen frequently (at least half the time), the likely diagnosis is CFS:

A substantial loss of ability to engage in preillness levels of work-related, educational, social, or personal activities that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially relieved by rest
Postexertional malaise (worsening of symptoms after physical, cognitive, or emotional activity)
Unrefreshing sleep, PLUS one or both of the following:
- Cognitive impairment (trouble remembering, learning new things, concentrating, or making decisions)
- Orthostatic intolerance (changes in heart rate and blood pressure, often resulting in feeling dizzy or lightheaded when standing; improving when lying down)

Treating CFS

No specific medication or other treatment can reliably relieve or cure CFS — but since CFS affects lives to such an extent, doing nothing is not acceptable. Treatment is aimed at easing at least some of the symptoms. For instance, a very low dose of a medication called a “tricyclic” may allow you to get more hours of deep, restorative sleep at night, resulting in more energy the following day. Graded exercise therapy (supervised physical activity starting at a low level and increasing gradually) may improve fatigue and function, although it doesn't help everyone and sometimes causes problems. Counseling, including cognitive behavioral therapy (CBT), may also help. CBT is a therapist-guided method of changing your thinking and fears about your health situation, which may make CFS easier to live with.

The lack of treatment options may make complementary and alternative treatments, such as acupuncture, massage, and herbal and botanical products, seem attractive. There is little research proving that these approaches are safe and helpful, but some women report relief with them. If you choose to try these options, find out about any possible negative effects. Advertising might claim that herbal and botanical remedies will help you, but the quality, safety, and content of these products is not regulated by the U.S. Food and Drug Administration. If you are considering such a product, check it out at National Center for Complementary and Integrative Health (see Resources below). And be sure to let your clinician know.

You may also want to consider participating in a research program investigating possible treatments for CFS. Places to look for such programs include hospitals associated with universities, or the CDC and support groups such as Solve ME/CFS Initiative (see Resources below).

Coming Soon: A New Name for CFS?

Some experts believe that the term “chronic fatigue syndrome” makes light of an illness that so profoundly interferes with peoples' lives. Because CFS is a systemic (affecting the whole body) illness marked by exertional intolerance, the IOM proposed a new name that acknowledges the true problem: “systemic exertion intolerance disease.” That name has not yet been formally adopted, but you may see it used in the future.

In Conclusion

There is still no cure, or even any reliably effective treatment, for CFS. But the IOM report should dispel the myth that CFS is “all in your head.” With more research, more clinician education, and more support for those who have CFS, this illness should receive the validation and attention it deserves.