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The scoop on chronic fatigue syndrome

More than one million Americans suffer from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). While researchers link it to problems involving the brain, immune system and energy metabolism, the causes of the disease and a cure have yet to be discovered. CDC visiting scientist Dana J. Brimmer, PhD, explains what doctors know.

Q: What is this disease?

Shine: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a serious, long-lasting illness that can dramatically alter patients’ lives and last for years. People with ME/CFS often have [symptoms that include moderate, severe, and substantial] pain, [debilitating] fatigue and sleep disturbances.

Although 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. Besides, [the National Academy of Sciences (NAS)] now gives doctors the guidance they need to assess and manage the disease.

What are the symptoms?

According to [NAS]ME/CFS has five main symptoms:

  • A severe decline in a person’s ability to perform usual activities that lasts longer than 6 months and is accompanied by fatigue
  • Symptoms that worsen after engaging in physical or mental activities that would have been “usual” before becoming ill (also known as post-exercise sickness, or PEM)
  • Non-restorative sleep
  • Difficulty thinking, processing information, or concentrating
  • Symptoms that get worse when a person stands up but get better when they lie down (also called orthostatic intolerance)

Many ME/CFS patients say that PEM is the symptom that interferes the most with their lives. EMP is not always predictable, so it is difficult to plan activities. For example, a person with ME/CFS can go grocery shopping on certain days. But on others, the trip could confine them to rest for several days afterwards. People with ME/CFS may also experience pain, a sore throat, or flu-like symptoms.

What happens if someone suspects ME/CFS?

Talk to a doctor. Only a health care provider can make a diagnosis. Because 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 CDC and National Institutes of Health (NIH) websites.

How can I support someone with ME/CFS?

ME/CFS affects patients, families and friends. The most important support you can give is understanding that the disease is real and has long-term consequences. The severity of ME/CFS varies from person to person. For example, some people can still work, but others are very sick and housebound.

The illness can also vary for a single patient – sometimes they may seem “well”, while other times they may be too ill to do normal activities. Try to understand these ups and downs and ask yourself what you can do to help.

In numbers

2x: Number of women with ME/CFS compared to men, although both sexes can be affected.

30 and 40 years old: Ages when the condition appears most often. But it can also affect young children, adolescents, and older adults.

17 to 24 billion dollars: Amount of annual medical bills and loss of income due to ME/CFS in the United States

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