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FAQs:

What is Fatigue?

Everyone feels tired from time to time. But fatigue means feeling severely overtired. Extreme fatigue makes it hard to get up in the morning, go to work, do your usual activities and make it through your day. Fatigue feels like you have an overwhelming urge to sleep, but you may not feel refreshed after you rest or sleep.

What is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)?

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex and disabling disease. 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.

The term ‘myalgic encephalomyelitis’ means pain in the muscles, and inflammation in the brain and spinal cord. Scientists are starting to understand some of the biological changes in the bodies of people with ME/CFS, although they have not yet found how to prevent, or cure it.

Research has found that ME/CFS is associated with problems involving:

- The body’s ability to produce energy at a cellular level

- Immune, neurological and hormonal systems

- Blood pressure and heart rate regulation

- Digestion

- Sleep

- Cognition – how quickly information is processed

ME/CFS affects men, women and children of all ages, ethnicities, and socioeconomic backgrounds. 75-80% of people with the disease are female. It is estimated that up to 600,000 Victorians may be living with ME/CFS, and as many as 90% are undiagnosed.

What is the Main Cause of Chronic Fatigue Syndrome?

It is possible that ME/CFS is caused by a change in the person’s immune system and the way it responds to infection or stress. ME/CFS shares some features of autoimmune illnesses (diseases in which the immune system attacks healthy tissues in own body, like in rheumatoid arthritis). For example, both ME/CFS and most autoimmune diseases are more common in women and both are characterized by increased inflammation. However, other signs of autoimmune disease, like tissue damage, are not found in patients with ME/CFS.

How Does ME/CFS Affect People?

ME/CFS affects different people in different ways, some more severely than others. There are four levels of severity of ME/CFS, which give an indication of the level of disability ME/CFS can create:

1. mild: 50% reduction in pre-illness activity

2. moderate: mostly housebound

3. severe: mostly bedridden

4. very severe: totally bedridden and need help with basic activities including nutrition and hydration.

The severity of ME/CFS can vary over time. A person living with ME/CFS could be at one level of severity now, then their disease could either improve or deteriorate over time. For some patients, their disease can worsen significantly with no known cause. Other patients have a “fluctuating illness” where they have better and worse periods, which last for months or years. It is unclear why this happens.

For most people, ME/CFS is a lifelong disease. Full recovery (a return to pre-illness functioning) is rare and estimated at less than 10%. For some people with ME/CFS, as time passes and their disease improves, they will find they can do more, but it is a slow and gradual process. However, this is not the case for everyone. Some people find their disease worsens over time, others may remain somewhat stable. With support and pacing, people can often improve their quality of life.

Who is at Risk for Chronic Fatigue Syndrome (CFS)?

Anyone can get CFS, but it is most common in people between 40 and 60 years old. Adult women have it more often that adult men. Whites are more likely than other races to get a diagnosis of CFS, but many people with CFS have not been diagnosed with it.

What Kind of Doctors Diagnoses Chronic Fatigue Syndrome?

Doctors might refer patients to see a specialist, like a neurologist, rheumatologist, or a sleep specialist, to check for other conditions that can cause similar symptoms. These specialists might find other conditions that could be treated. Patients can have other conditions and still have ME/CFS.

Is Chronic Fatigue Syndrome a Disability?

Chronic Fatigue Syndrome can cause a host of ongoing physical and cognitive symptoms that can result in long term disability.  These symptoms can be particularly distressing because they do not improve with rest. Individuals with CFS may be confined to their bed for days or weeks following even low levels of exertion.  Your insurance company will want to know all of your symptoms so it can better understand how and why they prevent you from working.

How Long Does Chronic Fatigue Syndrome Last?

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complicated disorder. It causes extreme fatigue that lasts for at least six months. Symptoms worsen with physical or mental activity but don't fully improve with rest.

Can Chronic Fatigue Be Cured?

There is no cure or approved treatment for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). However, some symptoms can be treated or managed. Treating these symptoms might provide relief for some patients with ME/CFS but not others.

How Do I Know if My Fatigue is Chronic?

Checking the Symptoms. Your doctor will review your medical history and test results. They will check to see if you have several key symptoms, beginning with extreme tiredness, or fatigue, that doesn’t improve with bed rest for 6 months or longer. Worsening of symptoms (difficulty thinking, problems sleeping, sore throat, headaches, feeling dizzy, or severe tiredness). after physical or mental exertion.

History of CFS

ME/CFS, once called neurasthenia, has an unfortunate but familiar history. Beginning in the mid-1800s, severe exhaustion was believed to result from a society that had become too fast-paced for the human body’s own good. Although men could develop neurasthenia, it was diagnosed far more often in women, especially those who “thought too much” or worked outside the home. It was either ignored and ridiculed by the medical establishment or, more often, treated with lengthy rest cures and dubious tonics. Chronic fatigue still isn’t included in most medical school curricula, and some doctors continue to dismiss it as a psychosomatic illness. Yet ME/CFS is a real physical disorder with potentially life-altering symptoms.

Facts about Chronic Fatigue Syndrome

1. The CDC estimates up to 2.5 million Americans have ME/CFS.

2. Anyone can get it, including children and teens.

3. It's most common in women in their 40s and 50s.

4. Women are more likely to develop it than men.

5. Most cases are mild or moderate.

6. About 1 in 4 people with the condition have severe symptoms.

If you have mild ME/CFS, you can probably manage on your own. Moderate symptoms can make it hard for you to move around. For example, you might need to sleep in the afternoons. Severe symptoms can impact your quality of life and abilities as badly as if you had lupus, heart disease, or rheumatoid arthritis.

Symptoms of CFS

Symptoms of CFS vary based on the individual and the severity of the condition. The most common symptom is fatigue that’s severe enough to interfere with your daily activities. For CFS to be diagnosed, a significantly reduced ability to perform your usual daily activities with fatigue must last for at least 6 months. It must not be curable with bed rest.

You will also experience extreme fatigue after physical or mental activities, which is referred to as post-exertional malaise (PEM). This can last for more than 24 hours after the activity.

CFS can also introduce sleep problems, such as:

- feeling unrefreshed after a night’s sleep

- chronic insomnia

- other sleep disorders

In addition, you may also experience:

- loss of memory

- reduced concentration

- orthostatic intolerance (going from lying or seated to standing positions makes you light-headed, dizzy, or faint)

Physical symptoms of CFS may include:

- muscle pain

- frequent headaches

- multi-joint pain without redness or swelling

- frequent sore throat

- tender and swollen lymph nodes in your neck and armpits

CFS affects some people in cycles, with periods of feeling worse and then better.

Symptoms may sometimes even disappear completely, which is referred to as remission. However, it’s still possible for symptoms to return later, which is referred to as a relapse.

This cycle of remission and relapse can make it difficult to manage your symptoms, but it’s possible.

Causes of CFS

The exact cause of ME/CFS is unknown. It may have more than one cause. For example, two or more possible causes may work together to trigger the illness.

Researchers are looking into these possible causes:

1. Infection -- About 1 out of 10 people who develop certain infections, such as Epstein-Barr virus and Q fever, go on to develop ME/CFS. Other infections have also been studied, but not one cause has been found.

2. Immune system changes -- ME/CFS may be triggered by changes in the way a person's immune system responds to stress or illness.

3. Mental or physical stress -- Many people with ME/CFS have been under serious mental or physical stress before becoming ill.

4. Energy production -- The way that cells within the body get energy is different in people with ME/CFS than in people without the condition. It's unclear how this is linked to developing the illness.

5. Long COVID or Post-acute sequelae of SARS CoV-2 infection (PASC) -- Some people who have been infected with the COVID-19 virus continue to have symptoms weeks or months later. This is called long COVID. Because symptoms such as extreme fatigue, difficulty concentrating, dizziness, and sleep problems are similar to ME/CFS, researchers are looking into a possible connection between the two conditions.

Genetics or environmental factors may also play a role in the development of ME/CFS:

1. Anyone can get ME/CFS.

2. While most common in people between 40 and 60 years old, the illness affects children, adolescents, and adults of all ages.

3. Among adults, women are affected more often than men.

4. White people are diagnosed more than other races and ethnicities. But many people with ME/CFS have not been diagnosed, particularly among minorities.

Risk Factors of CFS

Factors that may increase your risk of ME/CFS include:

1. Age. ME/CFS can occur at any age, but it most commonly affects young to middle-aged adults.

2. Sex. Women are diagnosed with ME/CFS much more often than men, but it may be that women are simply more likely to report their symptoms to a doctor.

3. Other medical problems. People who have a history of other complex medical problems, such as fibromyalgia or postural orthostatic tachycardia syndrome, may be more likely to develop ME/CFS.

How Chronic Fatigue Syndrome is Treated

Treatment is determined by your healthcare provider and based on:

1. Your overall health and medical history

2. Extent of the condition

3. Your tolerance for specific medicines, procedures, or therapies

4. Expectations for the course of the condition

5. Your opinion or preference

Treatment may include:

1. Medicine, including corticosteroids, antidepressants, and others

2. Light-intensity aerobic exercise (but avoid moderate to vigorously intense physical activity) 

3. Dietary supplements and herbal preparations

4. Psychotherapy and supportive counseling

How to Treat Chronic Fatigue Syndrome at Home

There is no cure or specific treatment for ME/CFS. Doctors are likely to recommend certain lifestyle changes to reduce symptoms and help maintain and build strength.

1. Physical pacing. This is one of the most important but also most challenging aspects of treating ME/CFS. Patients first must figure out what level of activity triggers post-exertional symptoms. Then, working with a physical therapist or personal trainer experienced in ME/CFS, they can begin a gentle exercise program that aims to increase in intensity while preventing PEM. Research shows that ME/CFS patients feel and sleep better and have more energy with exercise. 

2. Mental pacing. As with physical pacing, it’s important to avoid intense mental work that might trigger a reaction. Many people need to scale back what they once did on the job or in school.

3. Manage orthostatic symptoms. Adding more salt to the diet, drinking plenty of water and wearing compression hose can help stabilize blood pressure.

4. Improve sleep. Do you toss and turn even when you follow all the rules of sleep hygiene – cool, dark bedroom, no large meals, alcohol or screens before bed? Then consider meditation, free sleep apps like Calm, or cognitive behavioral therapy for insomnia (CBT-i), which is also available on various evidence-based apps.

5. Avoid trigger foods. Stay away from foods that aggravate symptoms, especially sugar, alcohol and caffeine. People with ME/CFS often have food sensitivities; a food diary can help you track the most troublesome. 

6. Try unsaturated fatty acids. Evidence suggests that fish oil supplements or foods rich in unsaturated fatty acids such as wild salmon, olive oil and nuts may reduce inflammation in ME/CFS. 

7. Consider traditional Chinese medicine. Herbs, acupuncture and other traditional Chinese therapies have been shown in randomized controlled trials to achieve excellent results for ME/CFS, often outperforming conventional approaches. Many private insurers cover acupuncture for various indications. Medicare covers it for back pain only and limits the number of treatments.

Sources:

Better Health

Healthline

Mount Sinai

Mayo Clinic

WebMD

Johns Hopkins

Medline Plus

Cleveland Clinic

CDC

Riemer Hess

Arthritis Foundation

The content herein is provided for general informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment. Medical information changes constantly, and therefore the content on this website should not be assumed to be current, complete or exhaustive. Always seek the advice of your doctor before starting or changing treatment. If you think you may have a medical emergency, please call your doctor or 9-1-1 (in the United States) immediately.