While general fatigue after a long day or constant activity is common, people with overwhelming fatigue that interferes with activities they used to regularly handle could have a complex illness known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

What is myalgic encephalomyelitis/chronic fatigue syndrome?

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a long-term condition marked by a major decline in activities that were tolerated beforehand, along with profound tiredness, regardless of bed rest. It can begin gradually or suddenly, and can last for years.

Symptoms often get worse when people exceed their usual levels of physical or mental activity or when they have been standing for long periods of time. It can lead to difficulties in attending work or school or participating in social activities. At its most severe, affected individuals can be housebound. 

Causes of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

The cause or causes of ME/CFS are not well understood. It can be triggered by certain infections, including infectious mononucleosis and SARS-CoV-2 (COVID-19) infection. Those who have long COVID often meet the definition of ME/CFS. Still, the exact cause of ME/CFS is not always apparent.

There is a genetic link to ME/CFS, and studies show that it is fairly common for more than one member of a family to be affected. Scientists are studying whether the immune system plays a role in causing symptoms, as many people with ME/CFS have allergies, reactions to foods and medications, frequent hives and, occasionally, recurrent infections.

Who is at risk for myalgic encephalomyelitis/chronic fatigue syndrome?

Because the cause of ME/CFS is not known, it’s hard to know what might put someone at risk of getting the condition. However, certain factors are seen more often in people with ME/CFS. These factors include:

• Gender. ME/CFS occurs up to two to four times more often in females than in males.
• Age. ME/CFS is uncommon before 10 years of age, and more often begins in adolescents and young adults. It is not a disorder of aging, and does not become more common with age.
• Joint hypermobility. Adolescents with ME/CFS are 3½ times more likely to have joints that have more flexibility (sometimes called “double-jointedness”), although how loose connective tissue increases the risk of ME/CFS is not known. 

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Symptoms

Symptoms of ME/CFS include major fatigue, worsening of symptoms with increases in activity (called post-exertional malaise), lightheadedness, poor short-term memory and concentration, and feeling unrested no matter how much sleep one has had.

Diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

According to the Institute of Medicine, a diagnosis of ME/CFS requires four core symptoms:

• A substantial drop in activities that used to be tolerated, usually associated with major fatigue.
• Post-exertional malaise: an increase in symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or weeks.
• Unrefreshing sleep, or feeling just as tired upon awakening as when the person went to sleep.

PLUS either

• Orthostatic intolerance (early appearance of symptoms like lightheadedness, trouble thinking and concentrating, and increased fatigue with prolonged sitting or standing). Many with orthostatic intolerance have a high heart rate or a drop in blood pressure that occurs with prolonged standing. Lying back down or raising (elevating) your feet may ease the symptoms, but some symptoms like fatigue and brain fog can linger. Activities that often are not well tolerated by people with ME/CFS include standing in line, shopping, showering and being in hot environments.

OR

• Mental impairment, such as difficulty following a conversation, paying attention and remembering or finding the right words. This is often termed “brain fog.” People with ME/CFS can accomplish mental tasks, but not as efficiently as before, and they report not feeling mentally sharp.

To meet the criteria for ME/CFS, symptoms have to be present for six months, but treatment can begin long before this point.

Additional symptoms may occur, though not all people experience them, including:

• New onset or patterns of headache
• Joint pain without swollen joints
• Muscle aches
• Tight areas of movement in the limbs and spine, including difficulty with arms-overhead movements
• Heat intolerance
• Palpitations, fast heart rate, fainting
• Sore throat,  tender neck nodes

Many of these symptoms can be caused by other health problems. Always talk with your doctor or other health care professional for a diagnosis.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Treatment

There is no consistently effective single treatment for ME/CFS, but there are several tools for easing symptoms.

Treatment may include:

• Medicines directed at headaches, pain, fast heart rate or low blood pressure, and difficulty thinking and concentrating
• Physical therapy, primarily gentle manual therapy techniques that improve areas of tightness in the limbs and spine and improve the ease of symptom-free movement
• Activity management, including a careful balancing of rest and activity to prevent flare-ups
• Light-intensity aerobic exercise, designed to avoid the worsening of symptoms if activity is too intense
• Salt tablets, dietary supplements and herbal products
• Psychotherapy and supportive counseling to help cope with the stress of chronic illness, especially when anxiety and depression are present

Living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Dealing with severe fatigue can be very challenging for adults and children alike. It’s important to work with a health care professional to find treatments that help you or your child.

Symptoms for chronic fatigue syndrome your doctor may look to treat include:

• Dizziness and lightheadedness: If you suffer from dizziness and lightheadedness, your doctor may check your heart rate and blood pressure or send you to a specialist. They may recommend additional water and salt intake, or suggest wearing support stockings as well as medications to improve circulation.
• Post-exertional malaise (PEM): Typically, PEM involves worsening symptoms after some form of exertion, whether that be physical, mental, emotional or upright activity, no matter how minor. Activity management, or pacing, can help you balance rest and activity to avoid flare-ups of PEM. Avoiding prolonged upright posture by shopping at non-peak times can be helpful.
• Sleep issues: Those with ME/CFS are often “tired but wired,” and can have a lot of difficulty falling asleep at night, or can have frequent awakenings or disrupted sleep schedules. They feel worse when they don’t get enough sleep. If you’re suffering from sleep issues, your doctor may recommend that you see a sleep specialist or take a specific medication to help you sleep better.
• Depression, stress and anxiety: Although ME/CFS is not caused by depression or anxiety, and not everyone with ME/CFS has these problems, in many cases those with chronic conditions may also suffer from mental health concerns. Your doctor may recommend seeing a mental health professional or trying certain relaxation techniques, such as meditation or yoga. Medication may be an option.
• Pain: Whether in the joints, the abdomen, or the head and neck, pain is a common symptom for those with ME/CFS. It’s important to talk to your doctor before taking over-the-counter medications to manage this pain. Your doctor may also check for food allergies or triggers. Gentle physical therapy, massage and other techniques may help alleviate your pain without using medication. Counseling and support groups may help with coping with chronic pain.

Considerations for Children Living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Children who have chronic fatigue syndrome may often need to miss out on activities, including:

• School and homework: Children with ME/CFS may have trouble completing school assignments within the allotted time, which may be due to issues with memory, thinking and learning. They may also have days when they are too tired to go to school. Before a diagnosis, parents and teachers may mistake this for school phobia. Parents and guardians can work with school staff to help the child or teen get proper support and accommodations in school.
• Social activities and family time: Children with ME/CFS often lack energy and feel ill outside of school hours. They most likely will not be able to take part in their favorite social activities as they did before having ME/CFS.

Parents and guardians can help monitor and manage activity levels so kids and their family and friends can still spend quality time together.

When should I call my doctor?

Call your doctor, or other health care professional, if your symptoms get worse or you have new symptoms.