Myalgic encephalomyelitis

Myalgic encephalomyelitis also known as chronic fatigue syndrome (CFS), is a serious, long-term illness that affects many body systems. Myalgic encephalomyelitis can often make you unable to do your usual activities. Sometimes you may not even be able to get out of bed. Myalgic encephalomyelitis or chronic fatigue syndrome, is a debilitating disease that lacks a universally accepted case definition, cause, diagnosis, or treatment.

People with myalgic encephalomyelitis or chronic fatigue syndrome have severe fatigue and sleep problems. Myalgic encephalomyelitis or chronic fatigue syndrome may get worse after people with the illness try to do as much as they want or need to do. This symptom is known as post-exertional malaise. Other symptoms can include problems with thinking and concentrating, pain, and dizziness.

According to the Centers for Disease Control and Prevention (CDC), more than one million Americans have myalgic encephalomyelitis or chronic fatigue syndrome ¹. According to an Institute of Medicine report published in 2015, an estimated 836,000 to 2.5 million Americans suffer from myalgic encephalomyelitis or chronic fatigue syndrome, but most of them have not been diagnosed. At least one-quarter of individuals with myalgic encephalomyelitis or chronic fatigue syndrome are bedbound or housebound at some point in the illness and most never regain their pre-disease level of functioning. Myalgic encephalomyelitis or chronic fatigue syndrome strikes people of all ages and racial, ethnic, and socioeconomic groups, and is diagnosed two to four times more often in women.

Myalgic encephalomyelitis or chronic fatigue syndrome is characterized by at least six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. It is sometimes preceded by flu-like symptoms followed by pain in the joints and muscles, unrefreshing sleep, tender lymph nodes, sore throat, and headache. A distinctive characteristic of the illness is post-exertion malaise, which is a worsening of symptoms following physical or mental exertion occurring within 12-48 hours of the exertion and requiring an extended recovery period. Although the cause of myalgic encephalomyelitis or chronic fatigue syndrome remains unknown, symptoms may be triggered by an infection.

Myalgic encephalomyelitis is a complex disease involving profound dysregulation of the central nervous system (CNS) ² and immune system ³, dysfunction of cellular energy metabolism and ion transport ⁴ and cardiovascular abnormalities ⁵. The underlying pathophysiology produces measurable abnormalities in physical and cognitive function and provides a basis for understanding the symptomatology.

Myalgic encephalomyelitis in children

Myalgic encephalomyelitis or chronic fatigue syndrome is a disabling and complex illness. Scientists do not know what causes it, and there is no cure or approved treatment for the illness. myalgic encephalomyelitis or chronic fatigue syndrome is often thought of as a problem in adults, but children (both adolescents and younger children) can also get myalgic encephalomyelitis or chronic fatigue syndrome.

• Not as much is known about myalgic encephalomyelitis or chronic fatigue syndrome in children because there have been few studies in this age group.
• Scientists estimate that up to 2 in 100 children suffer from myalgic encephalomyelitis or chronic fatigue syndrome.
• Myalgic encephalomyelitis or chronic fatigue syndrome is more common in adolescents than in younger children.

Symptoms myalgic encephalomyelitis in children

Children and adolescents with myalgic encephalomyelitis or chronic fatigue syndrome mostly have the same symptoms as adults. Some differences are:

• Children, especially adolescents, with myalgic encephalomyelitis or chronic fatigue syndrome have orthostatic intolerance (dizziness and lightheadedness and other symptoms that are triggered when standing up and sometimes also sitting upright) more often than adults. It is often the most unbearable symptom and may make other symptoms of myalgic encephalomyelitis or chronic fatigue syndrome worse.
• Sleep problems in young children may show up as a lack of their usual energy. In adolescents with myalgic encephalomyelitis or chronic fatigue syndrome, sleep problems may be hard to detect, as sleep cycles change during puberty. Many adolescents begin to stay up late and often have trouble waking up early. The demands of classes, homework, after-school jobs, and social activities also affect sleep. Common sleep complaints in children and adolescents with myalgic encephalomyelitis or chronic fatigue syndrome include:
  • Difficulty falling or staying asleep
  • Daytime sleepiness
  • Intense and vivid dreaming
• Unlike adults with myalgic encephalomyelitis or chronic fatigue syndrome, children and adolescents with myalgic encephalomyelitis or chronic fatigue syndrome do not usually have muscle and joint pain. Yet headaches and stomach pain may be more common in this age group. Younger children may not be able to describe the pain well.
• In children, particularly in adolescents, myalgic encephalomyelitis or chronic fatigue syndrome is more likely to start after an acute illness, like the flu or mononucleosis. Sometimes, myalgic encephalomyelitis or chronic fatigue syndrome in children might begin gradually.

Diagnosis of myalgic encephalomyelitis in children

As in adults, symptoms of myalgic encephalomyelitis or chronic fatigue syndrome in children and adolescents may appear similar to many other illnesses, and there is no test to confirm myalgic encephalomyelitis or chronic fatigue syndrome. This makes myalgic encephalomyelitis or chronic fatigue syndrome difficult to diagnose. The illness can be unpredictable. Symptoms may come and go, or there may be changes in how bad they are over time.

A diagnosis of myalgic encephalomyelitis or chronic fatigue syndrome requires at least 6 months of illness. However, children and other patients should be seen by doctors and get support as soon as they become ill. In other words, a child with some or all of the symptoms of myalgic encephalomyelitis or chronic fatigue syndrome should not wait for months to see a doctor. This 6-month period is used to complete laboratory tests and other activities, including follow-up appointments, to check for other illnesses that have symptoms similar to myalgic encephalomyelitis or chronic fatigue syndrome. The 6-month period also allows time for improvement for children with illnesses that have symptoms like myalgic encephalomyelitis or chronic fatigue syndrome, but that do not usually last as long as myalgic encephalomyelitis or chronic fatigue syndrome. It is also important that management of symptoms begins before 6 months have passed, and that support and accommodations for children in school are considered and implemented during this time.

To diagnose myalgic encephalomyelitis or chronic fatigue syndrome, the child’s doctor may undertake the following:

• Ask about child’s and family’s medical history, including a review of any medications and recent illnesses
• Do a thorough physical and mental status examination
• Order blood, urine or other tests

To get a better idea about the child’s illness, the doctor may ask many questions. Depending on the age of the child, the questions might be asked of the patient, parent/guardian, or both (together or independently). Questions might include:

• What is the child able to do now? How does it compare to what the child was able to do before?
• How long has the child been ill?
• Does the child feel better after sleeping or resting?
• What makes the child feel worse? What helps the child feel better?
• What symptoms keep the child from doing what he/she needs or wants to do?
• Does the child ever feel dizzy or lightheaded? Has the child been falling more often than before?
• Does the child seem to have trouble remembering or focusing on tasks?
• What happens when the child tries to do activities that used to be normal?

Parents/guardians and patients may want to keep a journal for their ill child. This could help patients and families remember important details during their healthcare visit. Keeping track of child’s activities and what leads to worsening of child’s symptoms can help identify the effects of the illness on daily activities.

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 myalgic encephalomyelitis or chronic fatigue syndrome. However, getting treatment for other conditions might help patients with myalgic encephalomyelitis or chronic fatigue syndrome feel better.

A number of factors can make diagnosing myalgic encephalomyelitis or chronic fatigue syndrome more difficult. For example:

• There is no laboratory test to confirm myalgic encephalomyelitis or chronic fatigue syndrome.
• Fatigue and other symptoms of myalgic encephalomyelitis or chronic fatigue syndrome are common to many illnesses.
• The illness is unpredictable and symptoms may come and go.
• The type, number, and severity of myalgic encephalomyelitis or chronic fatigue syndrome symptoms vary from person to person.

When diagnosing myalgic encephalomyelitis or chronic fatigue syndrome in children and adolescents, it is useful to remember that:

• Children and adolescents cannot always accurately describe their symptoms or how they feel.
• Parents may describe their child’s symptoms differently from how the child describes his/her symptoms.

Children with myalgic encephalomyelitis or chronic fatigue syndrome may miss school, which may be mistaken for school phobia. But unlike those with school phobia, children with myalgic encephalomyelitis or chronic fatigue syndrome are still ill and inactive on weekends and holidays. They may not be able to do their hobbies and take part in social activities as they did before the illness. They also may have a problem completing school assignments within the usual time. This might be a result of problems with thinking, learning, and memory caused by the illness.

Treatment of myalgic encephalomyelitis in children

As for adults, there is no cure or approved treatment for myalgic encephalomyelitis/chronic fatigue syndrome (myalgic encephalomyelitis or chronic fatigue syndrome) in children. However, some symptoms can be treated or managed. Treating these symptoms might provide relief for some patients with myalgic encephalomyelitis or chronic fatigue syndrome but not others. Other strategies, like learning new ways to manage activity, can also be helpful.

Patients, their families, and healthcare providers need to work together to decide which symptom causes the most problems. They should discuss the possible benefits and harms of any treatment plans, including medicines and other therapies. A treatment plan for a child who might have myalgic encephalomyelitis or chronic fatigue syndrome should focus on the most disruptive symptoms first.

It is important that healthcare providers talk with family members and children about the child’s lifestyle and behaviors to find out how the illness impacts the child’s daily life. For example, the child’s lack of energy may be because of myalgic encephalomyelitis or chronic fatigue syndrome or caused by normal changes in sleep cycles that often happen in puberty. Trying to understand what is causing the symptoms is important because it affects the treatment plan for the child.

Symptoms that healthcare providers might try to address are:

Post-exertional malaise

Post-exertional malaise is the worsening of symptoms after even minor physical, mental or emotional exertion. The symptoms typically get worse 12 to 48 hours after the activity and can last for days, weeks, or even longer.

Post-exertional malaise can be addressed by activity management, also called pacing. The goal of pacing is for children with myalgic encephalomyelitis or chronic fatigue syndrome to learn to balance rest and activity to avoid post-exertional malaise flare-ups caused by exertion that they cannot tolerate. To do this, patients need to find their individual limits for mental and physical activity. Then they need to plan activity and rest to stay within these limits. Some patients and doctors refer to staying within these limits as staying within the “energy envelope.” The limits may be different for each patient. Keeping activity and symptom diaries may help patients find their personal limits, especially early on in the illness.

Patients with myalgic encephalomyelitis or chronic fatigue syndrome need to avoid ‘push-and-crash’ cycles through carefully managing activity. “Push-and-crash” cycles are when someone with myalgic encephalomyelitis or chronic fatigue syndrome is having a good day and tries to push to do more than they would normally attempt (do too much, crash, rest, start to feel a little better, do too much once again). This can then lead to a “crash” (worsening of myalgic encephalomyelitis or chronic fatigue syndrome symptoms).

Any activity or exercise plan for children with myalgic encephalomyelitis or chronic fatigue syndrome needs to be carefully designed with input from each patient. While vigorous aerobic exercise is beneficial for many chronic illnesses, patients with myalgic encephalomyelitis or chronic fatigue syndrome do not tolerate such exercise routines. Standard exercise recommendations for healthy people can be harmful for patients with myalgic encephalomyelitis or chronic fatigue syndrome. However, it is important that patients with myalgic encephalomyelitis or chronic fatigue syndrome undertake activities that they can tolerate.

For patients with myalgic encephalomyelitis or chronic fatigue syndrome, it is important to find a balance between inactivity and excessive activity, which can make symptoms worse. This means a new way of thinking about daily activities. For example, daily chores and school activities may need to be broken down into smaller steps.

A symptom diary can be very helpful for managing myalgic encephalomyelitis or chronic fatigue syndrome. Keeping daily track of how patients feel and what patients do may help to find ways to make activities easier.

Rehabilitation specialists or exercise physiologists who know myalgic encephalomyelitis or chronic fatigue syndrome may help patients with adjusting to life with myalgic encephalomyelitis or chronic fatigue syndrome. Patients who have learned to listen to their bodies might benefit from carefully increasing exercise to improve fitness and avoid deconditioning. However, exercise is not a cure for myalgic encephalomyelitis or chronic fatigue syndrome.

Parents/guardians and doctors of children with myalgic encephalomyelitis or chronic fatigue syndrome can work with teachers and school administrators to adjust the school load for children with myalgic encephalomyelitis or chronic fatigue syndrome. While it is true that exercise can benefit children with certain chronic illnesses, children with myalgic encephalomyelitis or chronic fatigue syndrome should avoid activity that makes their symptoms worse.

Dizziness and lightheadedness (orthostatic intolerance)

Some children and adolescents with myalgic encephalomyelitis or chronic fatigue syndrome might also have symptoms of orthostatic intolerance that are triggered when-or made worse by-standing or sitting upright. These symptoms can include:

• Frequent dizziness and lightheadedness
• Changes in vision (blurred vision, seeing white or black spots)
• Weakness
• Feeling like your heart is beating too fast or too hard, fluttering, or skipping a beat

For patients with these symptoms, their doctor will check their heart rate and blood pressure, and may recommend they see a specialist, like a cardiologist or neurologist.

For children with myalgic encephalomyelitis or chronic fatigue syndrome who do not have heart or blood vessel disease, their doctor might suggest patients increase daily fluid and salt intake and use support stockings. If symptoms do not improve, prescription medication can be considered.

Sleep problems

Good sleep habits are important for all people, including those with myalgic encephalomyelitis or chronic fatigue syndrome. When children try these tips but are still unable to sleep, their doctor might recommend taking medicine to help with sleep.

Children might continue to feel unrefreshed even after the medications help them to get a full night of sleep. If so, they should consider seeing a sleep specialist. Most people with sleep disorders, like sleep apnea (symptoms include brief pausing in breathing during sleep) and narcolepsy symptoms include excessive daytime sleepiness, respond to therapy. However, for children with myalgic encephalomyelitis or chronic fatigue syndrome, not all symptoms may go away.

Problems concentrating, thinking, and remembering

Children with myalgic encephalomyelitis or chronic fatigue syndrome may have problems paying attention, thinking, remembering, and responding. For instance, after becoming ill it may be hard for children to take notes and listen to their teacher at the same time.

For children with myalgic encephalomyelitis or chronic fatigue syndrome who have concentration problems, some doctors have prescribed stimulant medications, like those typically used to treat Attention-Deficit and Hyperactivity Disorder (ADHD). While stimulants might help improve concentration for some patients with myalgic encephalomyelitis or chronic fatigue syndrome, they might lead to the “push-and-crash” cycle and worsen symptoms. “Push-and-crash” cycles are when someone with myalgic encephalomyelitis or chronic fatigue syndrome is having a good day and tries to push to do more than they would normally attempt (do too much, crash, rest, start to feel a little better, do too much once again).

Depression, stress, and anxiety

Adjusting to any chronic illness can sometimes lead to symptoms of depression and anxiety. Anxiety in children with myalgic encephalomyelitis or chronic fatigue syndrome is not caused by the illness itself. It can happen because of the changes the child must make to live with the illness. When healthcare providers are concerned about a patient’s psychological condition, they may recommend seeing a mental health professional.

Counseling may help to reduce stress and some symptoms of depression and anxiety, like sleep problems and headaches. Some children might benefit from antidepressants and anti-anxiety medications. However, doctors should use caution in prescribing these medications. Some drugs used to treat depression have other effects that might worsen other myalgic encephalomyelitis or chronic fatigue syndrome symptoms and cause side effects.

Some children with myalgic encephalomyelitis or chronic fatigue syndrome might benefit from trying techniques like deep breathing and muscle relaxation, massage, and movement therapies (like stretching, yoga, and tai chi). These can reduce stress and anxiety, and promote a sense of well-being.

Although treating depression and anxiety can ease mental and emotional distress in some patients and can be very beneficial, it is not a cure for myalgic encephalomyelitis or chronic fatigue syndrome.

Pain

Children with myalgic encephalomyelitis or chronic fatigue syndrome often have headaches and stomach pains. Doctors may want to check for food allergies and vision problems.

Gentle massage and heat may relieve pain for some patients. Parents/guardians should always talk to their child’s healthcare provider before trying any medication. Doctors may recommend trying over-the-counter pain-relievers, like acetaminophen or ibuprofen.

Myalgic encephalomyelitis causes

The causes of myalgic encephalomyelitis or chronic fatigue syndrome are still being investigated. Emerging evidence indicates that there are likely to be a number of factors involved and that there may be a number of different types or sub-groups of the illness.

It is possible that myalgic encephalomyelitis or chronic fatigue syndrome has more than one cause, meaning that patients with myalgic encephalomyelitis or chronic fatigue syndrome could have illness resulting from different causes. In addition, it is possible that two or more triggers might work together to cause the illness.

There is evidence that certain infections can trigger the illness. Many are viruses but myalgic encephalomyelitis may be triggered in other ways.

It is not clear why some people get myalgic encephalomyelitis while others recover; some fully and others to a degree. Around one in four people remain severely ill for many years. People who get myalgic encephalomyelitis may be vulnerable genetically, or their recovery after an infection could be affected by, for example, trying to return to work too soon, doing vigorous exercise, or experiencing major stresses.

Some people, including many researchers, believe that there are different illnesses being collated together under the umbrella term myalgic encephalomyelitis or myalgic encephalomyelitis/CFS. This is because of the spectrum of severity, the range in collection of symptoms that individuals can experience, and the length of illness.

Scientists know much less about other triggers, because they are less common. Some people may have had an infection, but didn’t notice it at the time.

Infections

People with myalgic encephalomyelitis or chronic fatigue syndrome often have their illness begin in a way that reminds them of getting the flu. This has made researchers suspect an infection may trigger myalgic encephalomyelitis or chronic fatigue syndrome. In addition, about one in ten people who become infected with Epstein-Barr virus (EBV), Ross River virus, or Coxiella burnetti will develop a set of symptoms that meet the criteria for myalgic encephalomyelitis or chronic fatigue syndrome. People with these infections who had severe symptoms are more likely than those with mild symptoms to later develop myalgic encephalomyelitis or chronic fatigue syndrome symptoms. But not all people with myalgic encephalomyelitis or chronic fatigue syndrome have had these infections.

Other infections that have been studied in connection with myalgic encephalomyelitis or chronic fatigue syndrome are human herpesvirus 6 (HHV-6), herpes simplex, varicella-zoster virus (VZV) (causes chickenpox/shingles), cytomegalovirus (CMV), enteroviruses, gastroenteritis, Hepatitis A, B and C infection, rubella, Candida albicans, bornaviruses, mycoplasma, viral meningitis, labyrinthitis and human immunodeficiency virus (HIV). However, these infections have not been found to cause myalgic encephalomyelitis or chronic fatigue syndrome.

Non-viral triggers include toxoplasma, brucella, salmonella, tuberculosis, Q fever, and Lyme disease.

However, there is no clear evidence that myalgic encephalomyelitis is a form of persistent, chronic infection – it may be a consequence of infection.

Immune system changes

It is possible that myalgic encephalomyelitis or chronic fatigue syndrome is caused by a change in the person’s immune system and the way it responds to infection or stress. myalgic encephalomyelitis or chronic fatigue syndrome 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 myalgic encephalomyelitis or chronic fatigue syndrome 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 myalgic encephalomyelitis or chronic fatigue syndrome.

Scientists think that the immune system might be contributing to myalgic encephalomyelitis or chronic fatigue syndrome in other ways, including:

• Chronic production of cytokines (cytokines are proteins that are produced by the immune system and regulate behavior of other cells). Higher levels of cytokines for a prolonged period can lead to changes in the body’s ability to respond to stress and might lead to the development of health conditions, including myalgic encephalomyelitis or chronic fatigue syndrome.
• Low-functioning natural killer (NK) cells. NK cells are cells of the immune system that help the body fight infections. Many patients with myalgic encephalomyelitis or chronic fatigue syndrome have NK cells with lower functional ability to fight infections. Studies have found that the poorer the function of NK cells in myalgic encephalomyelitis or chronic fatigue syndrome patients, the worse the severity of the illness. NK cell function tests are hard to do and their results are not reliable outside of research studies. Because of this problem, NK cell function testing is not yet useful for healthcare providers. Also, low NK cell function can occur in other illnesses and thus cannot be used to diagnose myalgic encephalomyelitis or chronic fatigue syndrome.
• Differences in markers of T-cell activation. T-cells are cells of the immune system that help activate and suppress immune responses to infections. If they become too active or not active enough, the immune response does not work as it should. However, not all patients with myalgic encephalomyelitis or chronic fatigue syndrome appear to have these differences in markers of T-cell activation.

Stress affecting body chemistry

Physical or emotional stress affects the hypothalamic-pituitary-adrenal axis (HPA axis). The hypothalamic-pituitary-adrenal axis is a complex network that controls our body’s reaction to stress and regulates a lot of body processes such as the immune response, digestion, energy usage, and mood. This occurs through connections between two glands of the nervous system (hypothalamus and pituitary) and adrenal glands (small organs that reside on top of the kidneys). The glands release various hormones, like corticotrophin-releasing hormone (CRH), cortisol, and others. When these hormones get out of balance, many body systems and functions, like the immune response, can be negatively affected. Cortisol, also called “the stress hormone,” helps to lower inflammation and calm down the immune system. Low levels of cortisol thus may lead to an increase in inflammation and chronic activation of the immune system.

Patients with myalgic encephalomyelitis or chronic fatigue syndrome commonly report physical or emotional stress before they become ill. Some patients with myalgic encephalomyelitis or chronic fatigue syndrome have lower levels of cortisol than healthy people, but their cortisol levels are still within the normal range. Therefore, doctors cannot use cortisol levels to diagnose or treat myalgic encephalomyelitis or chronic fatigue syndrome.

Changes in energy production

Scientists found differences between people with myalgic encephalomyelitis or chronic fatigue syndrome and healthy people in the way cells in their bodies get their energy. However, more studies are needed to figure out how these findings may be contributing to the illness.

Possible genetic link

Members of the same family sometimes have myalgic encephalomyelitis or chronic fatigue syndrome. Studies done in twins and families suggest that both genes and environment might play a role in myalgic encephalomyelitis or chronic fatigue syndrome. Scientists have not yet found the exact genes or other factors from the environment that may be responsible. More research is needed.

Less common triggers

In a very small number of people, the trigger may have been an immunisation, given perhaps when they were already unwell, or a physical trauma, such as a road accident, operation, radiotherapy or chemotherapy, or whilst rare, it is suspected that a very few cases may be triggered by certain toxic substances.

One big outstanding question is whether emotional stressors can be a trigger. Studies are not clear, some suggesting a link and others not. It is very unlikely that stressful life events, such as bereavement, can trigger myalgic encephalomyelitis on their own.

Often it isn’t possible to find out exactly what caused your illness – but you can still improve your symptoms, despite not knowing the exact trigger.

Potential sub-groups

There is growing evidence from experts in the field of myalgic encephalomyelitis that a number of sub-groups exist within myalgic encephalomyelitis, on the basis that individuals within these sub-groups differ in terms of their illness experience and the course their illness follows over time.

The likelihood of multiple sub-groups within myalgic encephalomyelitis most probably explains the huge variation observed by doctors in the progression of the illness and underlines the difficulty of making a prognosis. The experience of doctors specialising in myalgic encephalomyelitis is that some people recover completely (the rate is higher for young people) and tha others people improve, often significantly, over time. However, some remain very ill, often bedbound and/or housebound for many years.

Identification of sub-groups will, it is hoped, help doctors to personalise treatments and improve outcomes for people with myalgic encephalomyelitis

Myalgic encephalomyelitis symptoms

Symptoms of myalgic encephalomyelitis or chronic fatigue syndrome may appear similar to many other illnesses and there is no test to confirm myalgic encephalomyelitis or chronic fatigue syndrome. This makes myalgic encephalomyelitis or chronic fatigue syndrome difficult to diagnose. The illness can be unpredictable. Symptoms may come and go, or there may be changes in how bad they are over time.

Everyone who experiences myalgic encephalomyelitis has a different pattern of illness, and symptoms and severity can fluctuate and change over time.

Simple physical or mental activities, or combinations of activities, can leave people with myalgic encephalomyelitis feeling utterly debilitated. They can also experience an increase in other symptoms. The impact of this may be felt straightaway but it can typically take a day or two to kick in, and is not significantly improved by resting. This is a key feature of the way myalgic encephalomyelitis affects people, and is known as post-exertional malaise (sometimes called ‘payback’).

While it’s important to find out more about the range of symptoms experienced by different people with myalgic encephalomyelitis or chronic fatigue syndrome – it is also important to know that people with myalgic encephalomyelitis or chronic fatigue syndrome may only experience a few of them and at varying levels of severity. Always get new symptoms checked by your doctor, as they may be unrelated to myalgic encephalomyelitis or chronic fatigue syndrome Women often find that symptoms worsen at different times in their menstrual cycle.

Along with post-exertional malaise, people with myalgic encephalomyelitis or chronic fatigue syndrome may experience the following symptoms.

Feeling generally unwell

• Having flu-like symptoms (often called “general malaise” by doctors)
• Recurrent sore throat, with or without swollen glands.

Pain, such as:

• aching muscles or joints
• nerve pains or pins and needles
• headache or migraine
• twitching muscles or cramps
• abdominal pain (stomach or bowel problems)
• chest pain
• back pain.

If pain, especially muscle pain, is more of a problem than fatigue, fibromyalgia may be an issue.

Sleep disturbance, such as:

• unrefreshing sleep
• difficulty getting off to sleep
• waking for long periods in the early hours
• light, dreamy, restless sleep
• sleep reversal (for example sleeping from 4am till midday)
• hypersomnia (sleeping for a long time).

Problems with concentration, thinking and memory (“brain fog”), such as:

• reduced attention span
• short-term memory problems
• speech and language problems, including word-finding difficulties
• inability to plan or organise thoughts
• loss of concentration.

Problems with the nervous system, such as:

• poor temperature control
• dizziness on standing or sitting up
• hyper-sensitivity to light and sound
• sweating
• loss of balance
• poor circulation.

Digestive problems, such as:

• nausea
• loss of appetite
• indigestion
• excessive wind/bloating
• cramps
• alternating diarrhoea and constipation
• Irritable Bowel Syndrome (IBS).

Intolerance and increased sensitivity to:

• bright lights
• noise
• odours
• some foods (for example dairy or wheat)
• some medications
• alcohol.

Frustration, anxiety, low mood and depression are sometimes experienced by people with myalgic encephalomyelitis or chronic fatigue syndrome as a consequence of having to cope with the impact of the condition and its symptoms. This does not mean that myalgic encephalomyelitis or chronic fatigue syndrome is a mental health condition, and it should not be treated as such.

A doctor should be able to distinguish myalgic encephalomyelitis or chronic fatigue syndrome from other illnesses by doing a thorough medical exam. This includes asking many questions about the patient’s health history and current illness and asking about the symptoms to learn how often they occur, how bad they are, and how long they have lasted. It is also important for doctors to talk with patients about how the symptoms affect their lives.

Primary symptoms

Also called “core” symptoms, three primary symptoms are required for diagnosis:

1. Greatly lowered ability to do activities that were usual before the illness. This drop in activity level occurs along with fatigue and must last six months or longer. People with myalgic encephalomyelitis or chronic fatigue syndrome have fatigue that is very different from just being tired. The fatigue of myalgic encephalomyelitis or chronic fatigue syndrome:
   • Can be severe.
   • Is not a result of unusually difficult activity.
   • Is not relieved by sleep or rest.
   • Was not a problem before becoming ill (not life-long).
2. Worsening of myalgic encephalomyelitis or chronic fatigue syndrome symptoms after physical or mental activity that would not have caused a problem before illness. This is known as post-exertional malaise (PEM). People with myalgic encephalomyelitis or chronic fatigue syndrome often describe this experience as a “crash,” “relapse,” or “collapse.” During post-exertional malaise, any myalgic encephalomyelitis or chronic fatigue syndrome symptoms may get worse or first appear, including difficulty thinking, problems sleeping, sore throat, headaches, feeling dizzy, or severe tiredness. It may take days, weeks, or longer to recover from a crash. Sometimes patients may be house-bound or even completely bed-bound during crashes. People with myalgic encephalomyelitis or chronic fatigue syndrome may not be able to predict what will cause a crash or how long it will last. As examples:
   • Attending a child’s school event may leave someone house-bound for a couple of days and not able to do needed tasks, like laundry.
   • Shopping at the grocery store may cause a physical crash that requires a nap in the car before driving home or a call for a ride home.
   • Taking a shower may leave someone with myalgic encephalomyelitis or chronic fatigue syndrome bed-bound and unable to do anything for days.
   • Keeping up with work may lead to spending evenings and weekends recovering from the effort.
3. Sleep problems. People with myalgic encephalomyelitis or chronic fatigue syndrome may not feel better or less tired, even after a full night of sleep. Some people with myalgic encephalomyelitis or chronic fatigue syndrome may have problems falling asleep or staying asleep.

In addition to these core symptoms, one of the following two symptoms is required for diagnosis:

• Problems with thinking and memory. Most people with myalgic encephalomyelitis or chronic fatigue syndrome have trouble thinking quickly, remembering things, and paying attention to details. Patients often say they have “brain fog” to describe this problem because they feel “stuck in a fog” and not able to think clearly.
• Worsening of symptoms while standing or sitting upright. This is called orthostatic intolerance. People with myalgic encephalomyelitis or chronic fatigue syndrome may be lightheaded, dizzy, weak, or faint while standing or sitting up. They may have vision changes like blurring or seeing spots.

Other common symptoms

Many but not all people with myalgic encephalomyelitis or chronic fatigue syndrome have other symptoms.

Pain is very common in people with myalgic encephalomyelitis or chronic fatigue syndrome. The type of pain, where it occurs, and how bad it is varies a lot. The pain people with myalgic encephalomyelitis or chronic fatigue syndrome feel is not caused by an injury. The most common types of pain in myalgic encephalomyelitis or chronic fatigue syndrome are:

• Muscle pain and aches
• Joint pain without swelling or redness
• Headaches, either new or worsening

Some people with myalgic encephalomyelitis or chronic fatigue syndrome may also have:

• Tender lymph nodes in the neck or armpits
• A sore throat that happens often
• Digestive issues, like irritable bowel syndrome
• Chills and night sweats
• Allergies and sensitivities to foods, odors, chemicals, light, or noise
• Muscle weakness
• Shortness of breath
• Irregular heartbeat.

Severe myalgic encephalomyelitis

Around one in four people with myalgic encephalomyelitis or chronic fatigue syndrome can become severely affected by the condition.

They are often unable to leave the house or their bed, and accessing appropriate care and support can be a challenge. Action for myalgic encephalomyelitis or chronic fatigue syndrome’s 2019 Big Survey of more than 4,000 people with myalgic encephalomyelitis or chronic fatigue syndrome found that:

• 95% of respondents with severe myalgic encephalomyelitis or chronic fatigue syndrome said they had stopped or reduced household tasks
• 98% had stopped or reduced social contact
• 66% require full or part-time care
• 59% were no longer able to leave their home independently.

Myalgic encephalomyelitis diagnosis

Scientists have not yet found biological abnormalities in myalgic encephalomyelitis or chronic fatigue syndrome that are specific enough to be used as a diagnostic test (even though abnormalities in the brain and the immune system show very clearly that this is a serious, systemic illness).

To diagnose myalgic encephalomyelitis/chronic fatigue syndrome (myalgic encephalomyelitis or chronic fatigue syndrome), a patient’s doctor or healthcare provider will:

• Ask about medical history of the patient and their family
• Do a thorough physical and mental status examination
• Order blood, urine or other tests

To get a better idea about the illness, the healthcare provider will ask many questions. Questions might include:

• What are you able to do now? How does it compare to what you were able to do before?
• How long have you felt this way?
• Do you feel better after sleeping or resting?
• What makes you feel worse? What helps you feel better?
• What happens when you try to push to do activities that are now hard for you?
• Are you able to think as clearly as you did before becoming ill?
• What symptoms keep you from doing what you need or want to do?

Patients may want to keep an activity journal. This could help them remember important details during their healthcare visit.

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 myalgic encephalomyelitis or chronic fatigue syndrome. However, getting treatment for these conditions might help patients with myalgic encephalomyelitis or chronic fatigue syndrome feel better.

Institute of Medicine diagnostic criteria

Institute of Medicine committee in 2015 ⁶ recommended that physicians diagnose myalgic encephalomyelitis or chronic fatigue syndrome if the diagnostic criteria are met following an appropriate history, physical examination, and medical work-up.

Diagnosis of myalgic encephalomyelitis or chronic fatigue syndrome requires that a patient have the following three core symptoms:

1. A substantial reduction or impairment in the ability to engage in pre-illness levels of activities that persists for more than six months and is accompanied by fatigue — which is often profound — of new or definite onset, not the result of ongoing excessive exertion and not substantially alleviated by rest
2. The worsening of patients’ symptoms after any type of exertion — such as physical, cognitive, or emotional stress — known as post-exertional malaise
3. Unrefreshing sleep

At least one of the two following manifestations is also required:

• Cognitive impairment
• The inability to remain upright with symptoms that improve when lying down — known as orthostatic intolerance

These symptoms should persist for at least six months and be present at least half the time with moderate, substantial, or severe intensity to distinguish myalgic encephalomyelitis or chronic fatigue syndrome from other diseases.

NICE guideline

In 2007, the National Institute for Health and Care Excellence (NICE) published a clinical guideline on the diagnosis and management of myalgic encephalomyelitis or chronic fatigue syndrome for NHS healthcare professionals in England and Wales ⁷.

The NICE guideline for myalgic encephalomyelitis or chronic fatigue syndrome states that a diagnosis should be made after other possible diagnoses have been excluded and the symptoms have persisted for:

• four months in an adult
• three months in a child or young person; the diagnosis should be made or confirmed by a pediatrician.

It also says that a diagnosis of myalgic encephalomyelitis or chronic fatigue syndrome should be reconsidered if none of the following key features are present:

• post-exertional fatigue or malaise
• cognitive difficulties
• sleep disturbance
• chronic pain.

Myalgic encephalomyelitis treatment

There is no cure or approved treatment for myalgic encephalomyelitis or chronic fatigue syndrome. However, some symptoms can be treated or managed. Treating these symptoms might provide relief for some patients with myalgic encephalomyelitis or chronic fatigue syndrome but not others. Other strategies, like learning new ways to manage activity, can also be helpful.

Patients, their families, and healthcare providers need to work together to decide which symptom causes the most problems. This should be treated first. Patients, families, and healthcare providers should discuss the possible benefits and harms of any treatment plans, including medicines and other therapies.

Healthcare providers need to support their patients’ families as they come to understand how to live with this illness. Providers and families should remember that this process might be hard on people with myalgic encephalomyelitis or chronic fatigue syndrome.

Important note: Patients should talk with their doctors about all potential therapies because many treatments that are promoted as cures for myalgic encephalomyelitis or chronic fatigue syndrome are unproven, often costly, and could be dangerous.

Symptoms that healthcare providers might try to address are:

Post-exertional malaise

Post-exertional malaise is the worsening of symptoms after even minor physical, mental or emotional exertion. For some patients, sensory overload (light and sound) can induce post-exertional malaise. The symptoms typically get worse 12 to 48 hours after the activity or exposure and can last for days or even weeks.

post-exertional malaise can be addressed by activity management, also called pacing. The goal of pacing is to learn to balance rest and activity to avoid post-exertional malaise flare-ups, which can be caused by exertion that patients with myalgic encephalomyelitis or chronic fatigue syndrome cannot tolerate. To do this, patients need to find their individual limits for mental and physical activity. Then they need to plan activity and rest to stay within these limits. Some patients and doctors refer to staying within these limits as staying within the “energy envelope.” The limits may be different for each patient. Keeping activity and symptom diaries may help patients find their personal limits, especially early on in the illness.

Being mindful of personal limits could prove to be a helpful coping skill for people living with myalgic encephalomyelitis or chronic fatigue syndrome. This enables them the ability to find balance between activities and rest, giving them a sense of managing the illness rather than the illness controlling them. People living with myalgic encephalomyelitis or chronic fatigue syndrome may find that everyday activities such as buying groceries, brushing their teeth, or interacting with others may be enough to cause a relapse or “crash”. It may not be possible to entirely avoid these situations, but people living with myalgic encephalomyelitis or chronic fatigue syndrome need to be aware of monitoring their own activity limits. When having a good day, it is tempting to try and “push” (increasing activity beyond what would normally attempt) to make up for lost time. However, this can then lead to a “crash” (worsening of myalgic encephalomyelitis or chronic fatigue syndrome symptoms); the cycle can then repeat itself after people start recovering from the crash.

Rehabilitation specialists or exercise physiologists who understand myalgic encephalomyelitis or chronic fatigue syndrome may help patients with adjusting to life with myalgic encephalomyelitis or chronic fatigue syndrome. Finding ways to make activities easier may be helpful, like sitting while doing the laundry or showering, taking frequent breaks, and dividing large tasks into smaller steps. Some patients find heart rate monitors useful in keeping track of how hard their body is working, as a way to prevent post-exertional malaise. Patients who have learned to listen to their bodies might be able to increase their activity level. However, myalgic encephalomyelitis or chronic fatigue syndrome is unpredictable. post-exertional malaise symptoms may not start right after exercise, making it important for each treatment plan to be tailored for each case. Exercise is not a cure for myalgic encephalomyelitis or chronic fatigue syndrome.

Any activity or exercise plan for people with myalgic encephalomyelitis or chronic fatigue syndrome needs to be carefully designed with input from each patient. While vigorous aerobic exercise can be beneficial for many chronic illnesses, patients with myalgic encephalomyelitis or chronic fatigue syndrome do not tolerate such exercise routines. Standard exercise recommendations for healthy people can be harmful for patients with myalgic encephalomyelitis or chronic fatigue syndrome. However, it is important that patients with myalgic encephalomyelitis or chronic fatigue syndrome undertake activities that they can tolerate.

Sleep problems

Patients with myalgic encephalomyelitis or chronic fatigue syndrome often feel less refreshed and restored after sleep than they did before they became ill. Common sleep complaints include difficulty falling or staying asleep, extreme sleepiness, intense and vivid dreaming, restless legs, and nighttime muscle spasms.

Good sleep habits are important for all people, including those with myalgic encephalomyelitis or chronic fatigue syndrome. When people try these tips but are still unable to sleep, their doctor might recommend taking medicine to help with sleep. First, people should try over-the-counter sleep products. If this does not help, doctors can offer a prescription sleep medicine, starting at the smallest dose and using for the shortest possible time.

People might continue to feel unrefreshed even after the medications help them to get a full night of sleep.If so, they should consider seeing a sleep specialist. Most people with sleep disorders, like sleep apnea (symptoms include brief pausing in breathing during sleep) and narcolepsy (symptoms include excessive daytime sleepiness), respond to therapy. However, for people with myalgic encephalomyelitis or chronic fatigue syndrome, not all symptoms may go away.

Pain

People with myalgic encephalomyelitis or chronic fatigue syndrome often have deep pain in their muscles and joints. They might also have headaches (typically pressure-like) and soreness of their skin when touched.

Patients should always talk to their healthcare provider before trying any medication. Doctors may first recommend trying over-the-counter pain-relievers, like acetaminophen, aspirin, or ibuprofen. If these do not provide enough pain relief, patients may need to see a pain specialist. People with chronic pain, including those with myalgic encephalomyelitis or chronic fatigue syndrome, can benefit from counseling to learn new ways to deal with pain.

Other pain management methods include stretching and movement therapies, gentle massage, heat, toning exercises, and water therapy for healing. Acupuncture, when done by a licensed practitioner, might help with pain for some patients.

Depression, stress, and anxiety

Adjusting to a chronic, debilitating illness sometimes leads to other problems, including depression, stress, and anxiety. Many patients with myalgic encephalomyelitis or chronic fatigue syndrome develop depression during their illness. When present, depression or anxiety should be treated. Although treating depression or anxiety can be helpful, it is not a cure for myalgic encephalomyelitis or chronic fatigue syndrome.

Some people with myalgic encephalomyelitis or chronic fatigue syndrome might benefit from antidepressants and anti-anxiety medications. However, doctors should use caution in prescribing these medications. Some drugs used to treat depression have other effects that might worsen other myalgic encephalomyelitis or chronic fatigue syndrome symptoms and cause side effects. When healthcare providers are concerned about patient’s psychological condition, they may recommend seeing a mental health professional.

Some people with myalgic encephalomyelitis or chronic fatigue syndrome might benefit from trying techniques like deep breathing and muscle relaxation, massage, and movement therapies (such as stretching, yoga, and tai chi). These can reduce stress and anxiety, and promote a sense of well-being.

Dizziness and lightheadedness (orthostatic intolerance)

Some people with myalgic encephalomyelitis or chronic fatigue syndrome might also have symptoms of orthostatic intolerance that are triggered when-or made worse by-standing or sitting upright. These symptoms can include:

• Frequent dizziness and lightheadedness
• Changes in vision (blurred vision, seeing white or black spots)
• Weakness
• Feeling like your heart is beating too fast or too hard, fluttering, or skipping a beat

For patients with these symptoms, their doctor will check their heart rate and blood pressure, and may recommend they see a specialist, like a cardiologist or neurologist.

For people with myalgic encephalomyelitis or chronic fatigue syndrome who do not have heart or blood vessel disease, doctor might suggest patients increase daily fluid and salt intake and use support stockings. If symptoms do not improve, prescription medication can be considered.

Memory and concentration problems

Memory aids, like organizers and calendars, can help with memory problems. For people with myalgic encephalomyelitis or chronic fatigue syndrome who have concentration problems, some doctors have prescribed stimulant medications, like those typically used to treat Attention-Deficit and Hyperactivity Disorder (ADHD). While stimulants might help improve concentration for some patients with myalgic encephalomyelitis or chronic fatigue syndrome, they might lead to the ‘push-and-crash’ cycle and worsen symptoms. “Push-and-crash” cycles are when someone with myalgic encephalomyelitis or chronic fatigue syndrome is having a good day and tries to push to do more than they would normally attempt (do too much, crash, rest, start to feel a little better, do too much once again).

Living with myalgic encephalomyelitis

Strategies that do not involve use of medications and might be helpful to some patients are:

• Professional counseling: Talking with a therapist to help find strategies to cope with the illness and its impact on daily life and relationships.
• Balanced diet. A balanced diet is important for everyone’s good health and would benefit a person with or without any chronic illness.
• Nutritional supplements. Doctors might run tests to see if patients lack any important nutrients and might suggest supplements to try. Doctors and patients should talk about any risks and benefits of supplements, and consider any possible interactions that may occur with prescription medications. Follow-up tests to see if nutrient levels improve can help with treatment planning.
• Complementary therapies. Therapies, like meditation, gentle massage, deep breathing, or relaxation therapy, might be helpful.

Myalgic encephalomyelitis prognosis

Myalgic encephalomyelitis has no cure, its symptoms can persist for years, and its clinical course is punctuated by remissions and relapses. One prospective study suggests that approximately 50% of patients with myalgic encephalomyelitis can return to part-time or full-time work ⁸. Longer duration of illness, severe fatigue, comorbid depression, and anxiety are factors associated with a poorer prognosis ⁹. Good outcomes are associated with less fatigue severity at baseline, a sense of control over symptoms, and no attribution of the illness to a physical cause ¹⁰. Despite the considerable burden of morbidity associated with myalgic encephalomyelitis, there is no evidence of an increased risk of mortality.

References

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7. Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management. https://www.nice.org.uk/guidance/cg53
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