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Myalgic encephalomyelitis / chronic fatigue syndrome

Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is a chronic medical condition characterised by severe, long-term fatigue, sleep disturbances, and cognitive difficulties. Often following an infection, it significantly impairs daily function and quality of life. The condition is more common in women and typically appears between the ages of 40 and 60, though it can affect younger populations as well.

Icons of the four key ME/CFS symptoms: low battery for profound fatigue, weak muscle for post-exertional malaise, bed for sleep problems and crossed wires in brain for cognitive difficulties.
Icons of the four key ME/CFS symptoms: low battery for profound fatigue, weak muscle for post-exertional malaise, bed for sleep problems and crossed wires in brain for cognitive difficulties.

Signs and Symptoms

ME/CFS features a range of debilitating symptoms. The hallmark symptom is post-exertional malaise (PEM), a worsening of symptoms following minor physical or mental activity. This can last from hours to months.

Debilitating Fatigue

People with ME/CFS experience persistent, overwhelming fatigue that does not improve with rest. This fatigue can lead to sudden muscle weakness, clumsiness, and mental exhaustion, making cognitive tasks difficult.

Sleep Problems

Unrefreshing sleep is another core symptom. People often wake up feeling exhausted despite a full night's sleep. They may experience insomnia, hypersomnia, or vivid nightmares.

Cognitive Dysfunction

Cognitive issues, often referred to as "brain fog," include difficulties with memory, concentration, and information processing. Individuals may struggle to find words, multitask, or recall recent events.

Orthostatic Intolerance

Orthostatic intolerance involves symptoms like nausea, dizziness, and cognitive impairment that worsen upon standing or sitting and improve when lying down. Some individuals may experience postural orthostatic tachycardia syndrome (POTS) or orthostatic hypotension.

Other Symptoms

Additional symptoms include pain, often without swelling or redness, gastrointestinal issues, sore lymph nodes, and sensitivities to light, noise, or chemicals.

The onset of PEM is usually within two days. Peak PEM occurs within seven, while recovery can take months.
The onset of PEM is usually within two days. Peak PEM occurs within seven, while recovery can take months.

Diagnosis

Diagnosis is based on symptoms, as no specific lab test is available. The process involves a thorough medical history, mental and physical examination, and blood and urine tests to exclude other conditions. Several diagnostic criteria exist, including the NICE guidelines, IOM criteria, and CDC criteria.

ME/CFS symptoms according to five diagnostic criteria
ME/CFS symptoms according to five diagnostic criteria

Pathophysiology

The exact cause of ME/CFS is unknown. However, it is associated with changes in the nervous and immune systems, as well as energy metabolism. Neurological differences include autonomic nervous system dysfunction and altered brain structure. Immunological changes often involve decreased natural killer cell function and, in some cases, autoimmunity.

Management

There is no approved cure or drug treatment for ME/CFS. Management focuses on symptom relief and may involve a multidisciplinary approach. Key strategies include:

  • Pacing and Energy Management: Balancing activity with rest to avoid PEM. This may involve using heart rate monitors to stay within energy limits.
  • Symptom Relief: Addressing sleep problems with good sleep hygiene and medications, managing pain with over-the-counter painkillers or specialist referral, and treating co-occurring conditions like irritable bowel syndrome or depression.
  • Severe ME/CFS: Home adaptations and mobility aids can significantly improve quality of life for those with severe symptoms. Nutritional support may include intravenous or tube feeding.
A heart rate monitor can be helpful for energy management.
A heart rate monitor can be helpful for energy management.

Prognosis

Complete recovery is uncommon. Symptoms often fluctuate, and individuals may experience periods of improvement and relapse. Early diagnosis can improve care and prognosis, though many will need to adapt to living with the condition.

Epidemiology

Before the COVID-19 pandemic, ME/CFS affected roughly 0.17% to 0.89% of the population. Women are diagnosed more frequently than men, and the condition typically peaks at ages 10–19 and 30–39. Recent studies suggest an increase in cases due to long COVID.

Graph showing that females have two incidence peaks (teenagers and 30–39 years old), and males' incidence peaks in the teenager years.
Graph showing that females have two incidence peaks (teenagers and 30–39 years old), and males' incidence peaks in the teenager years.

History

ME/CFS has been recognised since the 1930s. It gained prominence after an outbreak at London's Royal Free Hospital in the 1950s. Despite early theories suggesting psychological causes, it is now generally considered a multisystem neuroimmune condition.

Presentation of a petition to the National Assembly for Wales relating to ME support in South East Wales
Presentation of a petition to the National Assembly for Wales relating to ME support in South East Wales.

Society and Culture

ME/CFS is a contested illness with significant social and economic impacts. Patients often face stigma and disbelief, both socially and within healthcare settings. Advocacy groups work to raise awareness and improve research funding, which has historically been low.

The blue ribbon is used for ME/CFS awareness.
The blue ribbon is used for ME/CFS awareness.

Research

Research aims to better understand the disease, identify biomarkers, and develop effective treatments. The emergence of long COVID has sparked renewed interest, as it shares similarities with ME/CFS, potentially leading to breakthroughs in treatment and understanding.

Graph of ME/CFS papers published by year, showing an increasing trend since about 1985
Graph of ME/CFS papers published by year, showing an increasing trend since about 1985

Self-assessment MCQs (single best answer)

What is the hallmark symptom of ME/CFS?



Which age group is typically affected by ME/CFS?



What percentage of the population was affected by ME/CFS before the COVID-19 pandemic?



Which gender is more commonly diagnosed with ME/CFS?



What is a common method for managing energy in people with ME/CFS?



Which of the following is NOT a primary symptom of ME/CFS?



What is the primary cause of ME/CFS?



Which of the following conditions is commonly co-occurring with ME/CFS?



What historical event significantly raised awareness of ME/CFS?



What is a common misconception about ME/CFS?



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