Chronic Fatigue Syndrome

Chronic fatigue syndrome, also known as myalgic encephalomyelitis, is a serious long-term illness that causes severe exhaustion and many other symptoms that don’t improve with rest. It affects up to 3.3 million people in the United States, yet more than 9 in 10 people with the condition have not been diagnosed.

Myalgic encephalomyelitis, ME/CFS, CFS

Table of contents

• What is chronic fatigue syndrome?
• Symptoms and signs
• Possible causes and triggers
• Who is affected?
• Diagnosis
• Treatment and management
• Living with chronic fatigue syndrome

What is chronic fatigue syndrome?

Chronic fatigue syndrome is a complicated disorder that causes extreme fatigue lasting for at least six months^[1]. This is not ordinary tiredness that gets better with sleep or rest. Instead, it is a biological illness that affects many body parts and makes physical and mental exertion very difficult^[1].

The condition is also called myalgic encephalomyelitis, which means pain in the muscles and inflammation in the brain and spinal cord^[7]. It has been classified as a neurological disorder by the World Health Organization, though it affects many parts of the body, including the brain and muscles, digestive, immune and cardiac systems^[7].

People with chronic fatigue syndrome cannot function the same way they did before they became ill^[1]. About 1 in 4 people with the condition are confined to bed at some point in their illness^[1]. In some cases, even getting out of bed or performing simple tasks like showering or cooking a meal can feel impossible^[5].

Symptoms and signs

The main symptom of chronic fatigue syndrome is severe tiredness that does not improve with rest and often gets worse after physical or mental activity^[1]. However, the condition involves many other symptoms that can vary from person to person and fluctuate in severity from day to day^[2].

The four main symptoms are feeling extremely tired all the time, sleep problems including insomnia or feeling exhausted when you wake up, problems with thinking and memory (sometimes called brain fog), and symptoms getting worse after physical or mental activity^[3].

A particularly important symptom is post-exertional malaise, often shortened to PEM^[1]. This means that after any activity—physical or mental—people may need to stay in bed for an extended time. PEM symptoms can be severe and can begin shortly after the exertion or several days later. Typically, symptoms get worse 12 to 48 hours after the activity and can last for days or even weeks^[9].

Other common symptoms include^[2][5]:

• Extreme exhaustion after physical or mental exercise
• Dizziness that worsens when moving from lying down or sitting to standing
• Muscle or joint pain
• Headaches
• Sore throat and tender lymph nodes in the neck or armpits
• Chills and night sweats
• Digestive issues, like irritable bowel syndrome, painful bloating, gas, constipation and diarrhea
• Mood swings and irritability
• Tingling or numbness in the feet, hands or face
• Vision problems
• Weakness

People with chronic fatigue syndrome may also become extra sensitive to light, sound, smells, food and medicines^[2]. Symptoms may appear similar to having the flu^[3]. The symptoms can come and go, and there may be times when symptoms get better as well as times when symptoms are more severe^[3].

Possible causes and triggers

The exact cause of chronic fatigue syndrome is unknown^[2]. Researchers believe it might be triggered by a combination of factors, and there is probably no single cause^[2]. The pathogenesis remains to be fully understood, but various mechanisms and biochemical changes have been implicated^[4].

Studies show that several factors might be involved in causing the condition^[5]:

• Immune system changes: Like some autoimmune conditions, chronic fatigue syndrome may cause the immune system to attack healthy parts of the body by mistake
• Problems with energy production: Cells may have trouble converting food into energy, leaving less fuel for the brain and muscles
• Genetic factors: The condition may run in biological families, suggesting it might be a genetic condition, though more research is needed

Research suggests that infections might trigger or cause a flare-up of symptoms^[5]. These infections include:

• Epstein-Barr virus
• Ross River virus
• C. burnetii
• COVID-19

For some people, the disease may be triggered suddenly by an infection, toxic exposure, anesthetic, immunization, or trauma such as a car accident. In other people, chronic fatigue syndrome may develop slowly over months or years^[7]. Physical or emotional stress may also trigger symptoms^[5].

Research clearly demonstrates that chronic fatigue syndrome is a biological illness, and it is not caused by being unfit or mental health problems^[7]. It is important to understand that this is a biological condition, not a psychological disorder^[4].

Who is affected?

Anyone can get chronic fatigue syndrome, no matter what age, gender or ethnicity they are^[1]. However, some groups are more affected than others.

The condition is most common in people in middle age, particularly those between 40 and 60 years old, but it also affects kids, teens and elderly people^[1][6]. Among adults, women are affected more often than men, with 75 to 80 percent of people with the disease being female^[1][7]. Among children, teens are more affected than younger kids^[1].

People who are white are diagnosed more often than other races and ethnicities. However, many people with chronic fatigue syndrome have not been diagnosed, especially among people from racial and ethnic minority groups^[1]. It is estimated that up to 3.3 million people in the United States suffer from the condition, yet more than 9 in 10 people have not been diagnosed by a doctor^[1].

Diagnosis

Diagnosing chronic fatigue syndrome can be difficult because there is no specific test for the condition^[1][3]. The symptoms may appear similar to many other illnesses, which makes it challenging to confirm^[1]. The illness can also be unpredictable, with symptoms that come and go or change in severity over time^[1].

A doctor should be able to distinguish chronic fatigue syndrome from other illnesses by doing a thorough medical exam^[1]. This includes:

• Asking many questions about the patient’s health history and current illness
• Asking about how often symptoms occur, how bad they are, and how long they have lasted
• Talking with patients about how the symptoms affect their lives
• Physical and mental status exams
• Blood, urine, or other tests to rule out other illnesses which could be causing the symptoms^[6]

The diagnostic criteria for chronic fatigue syndrome include^[8]:

• Severe fatigue that lasts at least six months and interferes with the ability to engage in pre-illness activities
• Fatigue that is of new or definite onset
• Fatigue that is not substantially improved by rest
• Fatigue that is worsened by physical, mental or emotional exertion

To meet the diagnostic criteria, a person would also need to have at least one of these symptoms: difficulties with memory, focus and concentration, or dizziness that worsens when standing or sitting upright (called orthostatic intolerance)^[8].

As the symptoms of chronic fatigue syndrome are similar to those of many common illnesses that usually get better on their own, a diagnosis may be considered if you do not get better as quickly as expected^[3]. One reason that people with the condition have not been diagnosed may be limited access to healthcare. Another reason may be a lack of healthcare providers who know about chronic fatigue syndrome and how to recognize it^[1].

Treatment and management

There is currently no cure or approved treatment for chronic fatigue syndrome^[1][9]. However, some symptoms can be treated or managed. Treating these symptoms might provide relief for some people and improve quality of life^[1].

Treatment is particularly difficult because the cause remains unknown and the disease affects people differently^[9]. There is no one-size-fits-all solution to managing the disease. People with chronic fatigue syndrome, their families, and healthcare providers need to work together to decide which symptom causes the most problems and treat that first^[9].

The treatment plan should be tailored to your symptoms and take into account your circumstances and preferences^[3][10]. Your treatment plan should be reviewed regularly^[10].

Managing post-exertional malaise through pacing

Post-exertional malaise can be addressed by activity management, also called pacing^[9]. The goal of pacing is to learn to balance activity and rest to avoid flare-ups. To do this, people with chronic fatigue syndrome need to find their individual limits for mental and physical activity, then plan activity and rest to stay within those limits^[9].

Some patients and doctors refer to staying within these limits as staying within the “energy envelope”^[9]. Keeping activity and symptom diaries may help find personal limits, especially early in the illness^[9]. The main goal of pacing is to reduce the intensity and frequency of post-exertional malaise by limiting activity to the energy available^[7].

When having a good day, people with chronic fatigue syndrome may be tempted to try and “push” by increasing activity beyond what they would normally attempt. However, this can lead to a “crash,” or worsening of symptoms. The cycle can then repeat itself after people start recovering from the crash^[9].

Energy management and lifestyle changes

Energy management is a treatment that aims to teach you how to make best use of your energy levels in your day-to-day life, without making your symptoms worse^[10]. As part of this treatment you may be asked to monitor your daily activities using a diary or apps on your phone^[10].

Every day, prioritize what needs to get done, then see how you can break those tasks up and make time for rest in between^[5]. It is important not to take on too much or spread yourself too thin. Don’t be afraid to say “no” when you need to^[5].

Sleep and rest

It’s important to establish a consistent sleep schedule, going to bed and waking up at the same time each day^[5]. Create a calm sleep environment by keeping your bedroom dark, quiet, and cool. Limiting screen time and caffeine intake in the evening can also promote better sleep^[5].

You should be given advice about how to establish a normal sleeping pattern. Having too much sleep does not usually improve the symptoms, and sleeping during the day can stop you sleeping at night^[10].

Nutrition and diet

It’s important you eat regularly and have a healthy, balanced diet^[10]. Nourish your body with nutrient-dense foods, including fresh fruits, vegetables, lean proteins, whole grains, and healthy fats. Avoid heavy, processed foods, and limit sugar and caffeine, which can cause energy crashes^[16].

Eating several small meals throughout the day might help keep energy levels up and control nausea, which sometimes happens with chronic fatigue syndrome^[17]. Diets that exclude certain food types are not recommended for people with chronic fatigue syndrome. There’s also insufficient evidence to recommend supplements, such as vitamin B12, vitamin C, magnesium, or coenzyme Q10^[10].

Exercise considerations

Exercise can be a tricky issue for those with chronic fatigue syndrome^[17]. While staying fit is important, any exercise can and does lead to exhaustion. Some people with chronic fatigue syndrome have found that exercise programs can make their symptoms better, but some also found it made no difference or actually made symptoms worse^[10].

If you think you would benefit from increased levels of exercise you should be offered a personalized plan with support from a healthcare professional (such as a physiotherapist) with experience in working with people with chronic fatigue syndrome^[10]. Graded exercise therapy, which aims to gradually increase physical activity levels, is not recommended for people with chronic fatigue syndrome^[10].

Medicines

There’s no specific medicine for treating chronic fatigue syndrome, but medicine can be used to relieve some of the symptoms^[10]. Painkillers you buy from a pharmacy or supermarket can help ease headaches, as well as muscle and joint pain. A doctor can prescribe stronger painkillers, although they should only be used on a short-term basis^[10].

Antidepressants can be useful for people with chronic fatigue syndrome who are in pain or having trouble sleeping^[10]. Depending on your diagnosis, medications may be prescribed to address related conditions, such as sleep disorders, depression, or chronic pain^[5].

Other treatment approaches

Your doctor may discuss with you whether cognitive behavioral therapy is a suitable option^[10]. This is a type of talking therapy that aims to help people manage chronic fatigue syndrome by looking at different ways of thinking about having a long-term condition. It aims to help you live with your symptoms, but does not directly treat the symptoms^[10].

Stress reduction techniques can help manage anxiety and improve mental health. These could include things like acupuncture, breathing exercises, massage, meditation, and yoga^[5]. Patients should talk with their healthcare providers about all therapies before beginning them^[14].

Living with chronic fatigue syndrome

Living with chronic fatigue syndrome can be difficult^[3]. Chronic fatigue syndrome often makes it hard to keep a job, go to school, and take part in family and social life. The condition can last for years and sometimes leads to serious disability^[1].

Chronic fatigue syndrome affects each person with the illness differently^[14]. Mildly impaired people may be able to keep working or going to school with careful planning and activity management. These strategies may also allow them to keep participating in social and family activities. Moderately impaired people may have trouble maintaining a regular work schedule and may limit social and family activities in order to keep working. Severely affected people may be wheelchair-dependent and house- or bed-bound^[14].

The condition can also affect your mental and emotional health and have a negative effect on your self-esteem^[3]. Chronic fatigue syndrome can lead to mental health challenges, like depression and anxiety. If you’re feeling down or overwhelmed, talk to a healthcare provider. There are treatments available that can help you feel better^[5].

It can be hard for co-workers, friends, family, and loved ones to understand chronic fatigue syndrome. They might not realize how much it affects your daily life or might not believe that it’s real. Friends and co-workers need to get educated about the condition^[17].

As well as asking your family and friends for support, you may find it useful to talk to other people with chronic fatigue syndrome^[3]. Many organizations provide information, support and practical advice for people affected by the condition.

About half of those with chronic fatigue syndrome work^[17]. If you have problems, you might qualify for coverage under the Americans with Disabilities Act. This law requires some employers to provide “reasonable accommodations” to help people with disabilities do their jobs, such as a flexible schedule, a place to rest at work, and written job instructions for people with memory problems^[17].

The economic impact of chronic fatigue syndrome is substantial. It costs the U.S. economy about $18 to $51 billion annually in medical costs and lost income^[1].