What is myalgic encephalomyelitis/chronic fatigue syndrome?

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disease that causes you to feel so ill that you can't do your normal activities. Sleeping problems occur along with extreme fatigue that doesn't get better with rest. Any kind of activity often makes your symptoms worse. You may have other symptoms like problems with thinking.

Symptoms can vary with ME/CFS. If you have ME/CFS:

• You feel exhausted all or much of the time. And it doesn't get better with rest.
• Your symptoms often flare up after a mental or physical activity that used to be no problem for you. There may be a day or two delay before it starts. And it may take days, weeks, or more to feel better.
• You have problems sleeping. Or you may wake up feeling tired or not rested.
• It may be harder for you to think clearly, concentrate, and remember things.
• You may feel dizzy, weak, or in more pain when you have been standing or sitting upright for a long time.
• You may also have headaches, muscle and joint pain, a sore throat, and tender glands in your neck or armpits.

Depression is common with ME/CFS, and it can make your other symptoms worse.

To be diagnosed with ME/CFS, you must have all of these symptoms:

• Major decrease in your ability to do the things you did before you got sick—including work, school, social, or personal activities—that has continued for more than 6 months.
• Worsening of symptoms after being mentally or physically active (post-exertional malaise).

• Sleep problems, including not feeling rested after sleeping (unrefreshed sleep).
• Extreme fatigue that is:
  • New or has not been a life-long problem.
  • Not caused by being active for a long period of time.
  • Not much better after resting.

You must also have one or more of these symptoms:

• Problems with concentration, short-term memory, or using the correct word (cognitive impairment).
• Feeling dizzy or faint while standing or sitting upright that gets better when you lie down (orthostatic intolerance).

Doctors may also use a variety of tests to confirm a diagnosis or to rule out other conditions.

There isn't a cure yet for ME/CFS. So the keys to living with ME/CFS are learning how to pace your activities and treating your symptoms.

There are some things you can do to treat the most common symptoms.

• For symptoms that are worse after activity (also called post-exertional malaise), learn how to manage your activity. Think about how much energy you have on a given day and try not to "spend" more than you have.
• If you feel dizzy or weak while sitting or standing, you can try wearing pressure stockings or putting your feet up. Or your doctor may recommend eating more salt or taking certain medicines.
• Sleep problems may improve with better sleep habits. You can also ask your doctor how medicines can help.
• Pain can be treated with over-the-counter medicines. Some prescription medicines may also help.
• If you're feeling depressed, talk to your doctor.

Taking good care of yourself can help ME/CFS symptoms.

When you have ME/CFS, you may not be able to do the things you want or need to do. The key is to be as active as possible without causing your symptoms to get worse. Focus on not pushing yourself to get more done on days you feel well. You may find that keeping a diary or using a fitness tracker to track your activities helps.

Try to improve your sleep habits and find ways to simplify your daily tasks. You may find it helpful to modify your diet or use eye masks and earplugs if you are sensitive to sounds, light, or certain foods.

It may also help to join a support group with other people who have ME/CFS and talk with a counselor who understands ME/CFS. This can help you find ways to cope with your illness.