More than 1 million Americans have myalgic encephalomyelitis/chronic fatigue syndrome. While researchers tie it to defects involving the brain, immune system, and energy metabolism, the causes of the illness and a cure remain undiscovered. Dana J. Brimmer, PhD, a visiting scientist at the CDC, explains what doctors do know.
Q: What is this disease?
Brimmer: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, long-term illness that can radically alter patients' lives and last for years. People with ME/CFS often have pain, extreme fatigue, and sleep problems.
While there is no cure, a diagnosis can help patients and families by giving them a better understanding of ME/CFS and knowledge about managing symptoms. In addition, a 2015 Institute of Medicine (IOM) report now gives doctors the guidance they need to evaluate and manage the condition.
What are the symptoms?
According to the IOM report, ME/CFS has five main symptoms:
- A large drop in ability to perform a person's usual activities that lasts for more than 6 months and is accompanied by fatigue
- Symptoms that get worse after doing physical or mental activities that would have been "usual" before they became ill (also known as post-exertional malaise, or PEM)
- Unrefreshing sleep
- Difficulty thinking, processing information, or concentrating
- Symptoms that worsen when a person stands up but improve when lying down (also known as orthostatic intolerance)
Many patients with ME/CFS say that PEM is the symptom that interferes with their lives the most. PEM is not always predictable, so it’s hard to plan activities. For example, a person with ME/CFS may be able to go to the grocery store without problems on some days. But on others, the trip could confine them to bed rest for several days after. People with ME/CFS may also have pain, a sore throat, or flu-like symptoms.
What if a person suspects ME/CFS?
Talk to a doctor. Only a health care provider can make a diagnosis. Since symptoms vary, some patients find it helpful to keep track of symptoms and bring a list to the first appointment. People can find information about ME/CFS on the websites of the CDC and the National Institutes of Health (NIH).
How can I support someone with ME/CFS?
ME/CFS affects patients, families, and friends. The most important support you can provide is to understand that the illness is real and has long-term consequences. The severity of ME/CFS varies by person -- for example, some people can still work, but others are very sick and homebound.
The illness can also vary for a single patient -- sometimes she may appear "fine," while other times, she may be too ill to do normal activities. Try to understand these ups and downs, and ask what you can do to help.
By the Numbers
2x: Number of women who have ME/CFS as compared to men, although people of both sexes can have the condition.
30s and 40s: Ages when the condition most often appears. But it also can affect young kids, teens, and older adults.
$17 billion to $24 billion: Amount in annual medical bills and lost income due to ME/CFS in the U.S.
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