Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), is a serious, chronic, complex, and systemic disease associated with neurological, immunological, autonomic, and energy metabolism dysfunction (Institute of Medicine, 2015). Individuals with ME/CFS experience a range of symptoms including significant impairment in function, post-exertional malaise, sleep impairment, cognitive issues, pain, orthostatic intolerance, flu-like symptoms, sensory intolerance, gastrointestinal and genitourinary issues. Post-exertional malaise (PEM) is the hallmark of the disease in which even trivial amounts of activity result in a prolonged exacerbation of symptoms and a further reduction in function.

The cause(s) of ME/CFS are unknown, but many individuals with the disease remain ill after an acute infection with symptoms that persist for six or more months. There is no diagnostic test or FDA-approved treatment for ME/CFS.

According to the CDC, 836,000 to 2.5 million Americans have ME/CFS. At least one-quarter of individuals with ME/CFS are bedbound or housebound at some point in the disease and most never regain their pre-disease level of functioning. ME/CFS strikes people of all ages and racial, ethnic, and socioeconomic groups, and is diagnosed two to four times more often in women.

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, chronic illness that affects about 1 million Americans. Women are two to four times more likely than men to be diagnosed with ME/CFS. People with ME/CFS experience a range of symptoms that makes it hard to do the daily tasks that most of us do without thinking — like dressing or bathing. Currently, there are no Food and Drug Administration-approved treatments specific for ME/CFS. Usually, treatments focus on relieving the symptoms.

Symptoms affect different parts of the body and can include unrefreshing sleep, weakness, muscle and joint pain, problems with concentration or memory, and headaches. Symptoms may be mild to severe. They may come and go, or they may last for weeks, months, or years. They also can happen over time or come on suddenly.

Experts think ME/CFS affects about 1 million Americans. Many of these cases have not been diagnosed.

Women are two to four times more likely than men to develop ME/CFS. Children do develop ME/CFS, but not as often as adults or adolescents.

No one knows for sure what causes ME/CFS. Many people say it started after a flu-like illness or other infection, such as a cold or stomach bug. It also can follow infection with the Epstein-Barr virus (the virus that causes mononucleosis or "mono"). Some people with ME/CFS report that it started after a time of great physical stress, such as following surgery.

The symptoms of ME/CFS can come and go or a person may have these symptoms all of the time. At first, one may feel like she has the flu. The main symptoms include:

• Feeling extremely exhausted for more than 24 hours after physical or mental exercise
• Not feeling refreshed after sleeping, or having trouble sleeping
• Having a hard time concentrating, or problems with attention and memory
• Feeling dizzy or faint when sitting up or standing (due to a drop in blood pressure)
• Muscle pain or aches
• Pain or aches in joints without swelling or redness
• Headaches of a new type, pattern, or strength
• Tender lymph nodes in the neck or under the arm
• Sore throat that is constant or goes away and comes back often

Less-common symptoms of ME/CFS include:

• Visual problems (blurring, sensitivity to light, eye pain)
• Psychological symptoms (irritability, mood swings, panic attacks, anxiety)
• Chills and night sweats
• Low grade fever or low body temperature
• Irritable bowel
• Allergies and sensitivities to foods, odors, chemicals, medications, and sound
• Numbness, tingling, or burning sensations in the face, hands, or feet

Symptoms of ME/CFS vary widely from person to person and may be serious or mild. Most symptoms are invisible to others, which can make it hard for friends, family members, and the public to understand the challenges a person with ME/CFS faces. If you think you may have ME/CFS, talk to your doctor.

Because many symptoms of ME/CFS are also symptoms of other illnesses or side effects of medicine, your doctor will need to do physical exams and tests to help determine if you have ME/CFS. There are no standard lab tests to diagnose ME/CFS.

If you think you may have ME/CFS, see your doctor. Your doctor may:

• Ask you about your physical and mental health.
• Do a physical exam.
• Order lab tests based on your symptoms, such as urine and blood tests, which will tell your doctor if something other than ME/CFS might be causing your symptoms.
• Order tests that check for problems found in people with ME/CFS.
• Classify you as having ME/CFS if:
  1. You have the main symptoms of ME/CFS, including extreme fatigue or exhaustion that does not go away and that prevents you from doing the things you want and need to do for you and your family; exhaustion that comes after mental or physical exercise; sleep problems; and pain; AND
  2. You have had the extreme fatigue and other symptoms for 6 months or longer (3 months or longer for children and adolescents); AND
  3. You and your doctor cannot find another explanation for your symptoms.

The process to make a final diagnosis of ME/CFS can take a long time, so try to be patient. It is usually best to develop a relationship — and follow up often — with one doctor so that he or she can get to know you and see how you respond to treatment over time.

While these tests are being done, talk to your doctor about ways to ease your symptoms. Your doctor may also need to learn more about ME/CFS to help you. If you feel your doctor has doubts about it being a "real" illness, share this document and the links to resources found at the end. If disbelief or doubts continue, consider seeing another doctor for a second opinion. Contact a local university medical school, research center, or one of the resources listed below for help finding a doctor who treats people with ME/CFS.

Right now, there is no cure or FDA-approved treatments for ME/CFS. But, there are things you and your doctor can do to help ease your symptoms. Because the symptoms of ME/CFS vary from person to person, the management plan you discuss with your doctor may look very different from the plan of another person with ME/CFS.

Some people say that complementary or alternative medicine has helped their ME/CFS symptoms. Keep in mind that many alternative treatments, dietary supplements, and herbal remedies claim to cure ME/CFS, but some might do more harm than good. Talk to your doctor before trying alternative therapies to be sure they're safe.

Strategies that do not involve use of medications and might be helpful to some patients are:

• Professional counseling: Talking with a therapist to help find strategies to cope with the illness and its impact on daily life and relationships.
• Balanced diet. A balanced diet is important for everyone’s good health and would benefit a person with or without any chronic illness.
• Nutritional supplements. Doctors might run tests to see if patients lack any important nutrients and might suggest supplements to try. Doctors and patients should talk about any risks and benefits of supplements, and consider any possible interactions that may occur with prescription medications. Follow-up tests to see if nutrient levels improve can help with treatment planning.
• Complementary therapies. Therapies, like meditation, gentle massage, deep breathing, or relaxation therapy, might be helpful.

Important note: Patients should talk with their doctors about all potential therapies because many treatments that are promoted as cures for ME/CFS are unproven, often costly, and could be dangerous.

Talking about your feelings with a friend or family member can help. Sometimes it also helps to talk with people who are going through the same thing. Consider joining an ME/CFS support group.

Research shows that about half of people with ME/CFS work part-time or full-time jobs. For some people with ME/CFS, the ability to work is possible thanks to a supportive employer and certain workplace accommodations, including a flexible schedule, a quiet comfortable place to rest, and memory aids.

But, if you can't work because of ME/CFS, you may be eligible for Social Security benefits. Learn more about applying for disability through the Social Security Administration.