Chronic Fatigue Syndrome

What is chronic fatigue syndrome?

Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), is a long-lasting illness. With it, you feel extremely tired, and rest doesn’t help. You may also have other symptoms.

CFS affects your daily activities and your quality of life. You can’t do things you used to do. Even simple tasks can feel overwhelming. 

It can be hard to work, go to school, socialize or take care of yourself. You may be too tired to leave the house or get out of bed. At times, you may need to use a wheelchair.

Anyone can get CFS, but it's most commonly diagnosed in adults between ages 20 and 40, especially women. Research is ongoing but it’s not clear exactly what causes CFS and it’s challenging to find treatments that work.

Signs and symptoms of chronic fatigue syndrome

CFS affects various systems in your body and may produce a wide range of symptoms. Some of the core symptoms are:

• Persistent fatigue that doesn't ease up when you rest. This is the most common symptom of CFS.
• Symptoms that get worse when you exert yourself physically, mentally or emotionally. This may be called post-exertional malaise (PEM). PEM can happen with low levels of activity, like taking a shower or cooking a meal. It can start within 12 to 48 hours of the activity and take you days or weeks to recover.
• Sleep problems like insomnia, trouble staying asleep or sleeping but not feeling rested. You may feel as tired when you wake up as you did when you went to bed.
• Difficulties in thinking (cognitive impairment), which may include trouble concentrating, memory lapses, mental sluggishness and brain fog.
• Muscle pain throughout your body, joint discomfort and frequent headaches.
• Feeling dizzy or lightheaded when you stand or sit up. This can make it hard to wait in a line or take a shower.
• Other symptoms such as sore throat, swollen or tender lymph nodes, digestive issues and feeling like you have the flu.
• Sensitivities to light, sound, temperature, food or medicine.

Symptoms may start gradually, come and go, or may be more or less bothersome at different times. Symptoms need to be present for six months before you can be diagnosed with CFS, but you can start treatment as soon as you notice symptoms.

CFS causes and risk factors

It's not clear exactly what causes chronic fatigue syndrome but one or a combination of these factors may play a role:

• Viral infections such as Epstein Barr virus, human herpesvirus 6, mononucleosis and Covid-19, since some people develop CFS after a viral infection.
• Immune system issues, although it's not clear if these conditions cause CFS or result from it. People with CFS may have allergies, hives, infections and reactions to food and medication.
• Changes in hormone levels that involve the hypothalamus, pituitary glands or adrenal glands.
• Genetic factors, since CFS often runs in families.

You're at higher risk for CFS if you:

• Are female
• Are between 20 and 40 years old
• Recently had an injury, surgery or major emotional stress
• Have had certain viral illnesses
• Have fibromyalgia or postural orthostatic tachycardia syndrome (POTS)
• Have very flexible joints (joint hypermobility)
• Have certain genetic markers

Diagnosis of CFS/ME

See a health care provider if you have fatigue without a reason. Fatigue is a symptom of a lot of health conditions.

It can take a long time to diagnose CFS, since there is no specific test that shows you have it. Your health care provider may consider: 

• A detailed medical history that includes a close look at your symptoms, including how long you've had them and how they are impacting your life.
• Blood tests and physical exams to help rule out other causes like those listed below.
• Criteria that include long-lasting fatigue, post-exertional malaise, issues with thinking or dizziness or lightheadedness when sitting up or standing.

Your doctor may recommend tracking your activities and energy levels to get a better understanding of how CFS is affecting you.

Conditions that can be mistaken for chronic fatigue syndrome

It can be hard to diagnose CFS because it shares symptoms with many other conditions including:

• Thyroid disorders such as hyperthyroidism and hypothyroidism, which can cause fatigue, weight changes and mood disturbances.
• Sleep disorders like sleep apnea, which can cause sleep that's not restorative.
• Depression and anxiety, which can cause fatigue, trouble concentrating and sleep issues.
• Fibromyalgia, which also causes muscle pain and fatigue.
• Autoimmune diseases such as lupus or rheumatoid arthritis, which may cause joint pain and fatigue.
• Neurological disorders like multiple sclerosis that cause pain, trouble with thinking and fatigue.

Treatment options for chronic fatigue syndrome

There is no cure for CFS/ME, but a combination of these treatments can help manage your symptoms and improve your quality of life.

• Blood pressure or heart rhythm medication may help with nausea or fainting when you sit or stand up.
• Sleep aids may help you sleep better and get the rest you need.
• Physical therapy may make it easier for you to move without triggering symptoms.
• Antidepressants or anti-anxiety medications may help with mental health symptoms.
• Following a routine, prioritizing your tasks and balancing your activity with rest, called pacing, can help you manage your energy levels and avoid overexertion.
• A balanced diet rich in fruits, vegetables and whole grains can support your overall health and may reduce some symptoms of CFS. 
• Cognitive behavioral therapy (CBT) can help you cope with the emotional impact of CFS and help you develop strategies to manage your symptoms.
• Light, supervised exercise may help but you need to be careful. If you do too much, you could make your symptoms worse.

You may wonder whether lifestyle changes can really make a difference. Many people with CFS find that pacing their activities, getting better sleep and choosing a healthy diet help reduce their symptoms and improve their daily lives.

Researchers are studying the causes and treatment of CFS. They are exploring new therapies, and there is hope for more effective treatments in the future.

Living with chronic fatigue syndrome

CFS can be overwhelming but strategies and support can make a difference:

• Keep a log of your symptoms so you can look for patterns. Share this information with your health care provider.
• Use reminders or apps to help you remember tasks and responsibilities if you're having trouble with thinking.
• Follow a regular daily routine.
• Explain CFS to your family and friends and share what you're experiencing so they can support you.
• Consider getting a letter from your health care provider to share with your employer if you need to request work accommodations.
• Adjust your work hours, plan your social life and include rest breaks to help manage fatigue.
• Join an in-person or online support group so you can connect with others who understand what you're going through.
• Seek counseling if you need it. CFS can be hard to cope with on your own, without professional mental health support.

Getting care

While chronic fatigue syndrome (myalgic encephalomyelitis) is complex, understanding it and managing your symptoms can improve your quality of life. At Banner Health, our specialists are dedicated to finding the best treatment plan and support so you can live as well as you can with CFE/ME.