Chronic Fatigue Syndrome (ME/CFS): Symptoms, Evaluation and Next Steps

What it involves

MedlinePlus describes ME/CFS as a serious, long-term illness that affects many body systems and can make people unable to do their usual activities. Some people cannot get out of bed. The exact cause is unknown. Researchers are looking at infections, immune system changes, physical or emotional stress and the way cells produce energy. It is most common between ages 40 and 60, and adult women are affected more often than men.

Who this is for

• Adults whose exhaustion has lasted months and is not fixed by rest or sleep.
• Patients who feel much worse for a day or more after physical or mental effort.
• People who also have unrefreshing sleep, trouble concentrating, or dizziness on standing.
• Anyone who has had a long recovery after a viral illness and is still not back to normal.

What to expect

• A detailed history of when the fatigue began, what makes it worse, your sleep and your mood
• A physical exam and a review of every medicine you take
• Blood work and urine testing to look for anemia, thyroid, blood sugar, kidney, liver and other causes
• A plan to treat what is found, pace your activity, and refer to a specialist if the picture is unclear

The core symptoms

MedlinePlus lists three core symptoms: severe fatigue that makes you unable to do activities you used to do, symptoms that get worse after physical or mental activity (called post-exertional malaise), and sleep problems. The fatigue is new, lasts at least 6 months, is not due to unusual effort and is not relieved by rest. A diagnosis also needs trouble with thinking and memory, or symptoms that worsen when standing or sitting upright. The brain fog guide covers the thinking problems in more detail.

Ruling out other causes first

Because the diagnosis depends on excluding other causes, MedlinePlus says a provider checks for conditions that cause long-term fatigue, including infections, autoimmune disorders, muscle or nerve diseases, hypothyroidism, heart, kidney or liver disease, depression and tumors. Many are found with simple blood work. The thyroid blood tests guide, the anemia and low iron guide and the sleep apnea guide describe three common culprits that are worth finding before anything else is concluded.

How this differs from everyday tiredness

Most tiredness has a plain cause that can be treated, such as poor sleep, stress, a medicine or low iron. The fatigue and tiredness guide walks through that wider workup. ME/CFS is considered when exhaustion has lasted at least 6 months, when activity reliably makes you worse afterward, and when the usual causes have been checked and do not explain it. A provider will not label it early; the point of the visit is to make sure nothing treatable is missed.

Treatment and pacing

MedlinePlus says there is no cure, and the goal is to relieve symptoms and reduce disability. Care can include sleep management, medicines for pain or for anxiety and depression, and a healthy diet. It suggests balancing activity, rest and sleep, breaking big tasks into smaller ones, and spreading hard tasks across the week. Mild exercise may help only when your care team guides how much and how fast to increase it. Mood and sleep are often tied in, and the depression screening guide and insomnia guide explain how those are checked.

Outlook and support

The outlook varies and is hard to predict at the start. MedlinePlus notes that some people recover completely within 6 months to a year, symptoms can come and go in cycles, and some people never feel the way they did before. About 1 in 4 are severely disabled. Support groups help some patients, and so can a therapist who helps you deal with the impact of the illness. If you ever have thoughts of ending your life, call or text 988 or call 911 right away.

Sources

• MedlinePlus: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) (medical encyclopedia)
• MedlinePlus: ME/CFS (health topic)