ME/CFS: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Explained

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), also called chronic fatigue syndrome, is a serious, long-term illness that affects many body systems. It often keeps people from their usual activities — sometimes they can't even get out of bed.

Causes and who gets it

The cause isn't known. There may be more than one, or several triggers acting together. Researchers are studying:

• infections;
• immune system changes;
• physical or emotional stress;
• changes in how cells get their energy;
• genetics — it sometimes runs in families.

Anyone can get ME/CFS, but it is most common between 40 and 60, and adult women get it more often than men.

Symptoms

Core symptoms:

1. Severe fatigue and being unable to do what you did before the illness; the fatigue lasts six months or longer and rest doesn't help.
2. Post-exertional malaise (PEM): symptoms worsen after any physical or mental activity.
3. Sleep problems.

Plus at least one of:

• problems with thinking and memory;
• orthostatic intolerance — symptoms get worse when standing or sitting upright, bringing lightheadedness, dizziness, weakness or faintness.

Other possible symptoms: pain (muscles, joints, headaches), sore throat, tender lymph nodes in the neck or armpits, digestive problems such as irritable bowel syndrome, chills and night sweats, and sensitivities to foods, odors, chemicals, light or noise. Symptoms can come and go, and get better or worse over time.

Diagnosis

There is no specific test, and other illnesses look similar, so providers must rule them out. Expect:

• questions about your medical and family history;
• detailed questions about your symptoms — how often, how severe, how long, and how they affect your life;
• thorough physical and mental status exams;
• blood, urine or other tests for other illnesses, and perhaps a specialist referral.

Managing it

There is no cure or approved treatment, but some symptoms can be treated or managed. Work out a plan with your family and provider, and tackle the most troublesome symptom first — for example, try good sleep habits for sleep problems, then medicines or a sleep specialist if needed.

• Manage activity to avoid "push and crash" — doing too much on a good day, then getting worse.
• Lean on family and friends: it can be hard to plan treatment and care for yourself.
• Other things that may help: counseling, a healthy diet, supplements if your provider suggests them, and complementary therapies such as meditation, gentle massage or relaxation therapy.
• Be wary of "cures": some are unproven, costly and possibly dangerous — talk to your provider before trying any new treatment.

Sources

Based on "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome," MedlinePlus, National Library of Medicine, with its summary from the Centers for Disease Control and Prevention; a work of the United States government in the public domain.