What is ME/CFS?

 

What is Myalgic Encephalomyelitis (ME)?
Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), is a chronic, disabling illness that affects multiple systems in the body. It can impact people of all ages, but is more common in women. Around 404,000 people in England are thought to be living with ME (estimates for the rest of the UK are currently unclear).

The most defining symptom is post-exertional malaise (PEM) - a marked worsening of symptoms after even minor physical, mental, or emotional effort.

Common Symptoms
People with ME may experience a wide range of symptoms, including:

  • Post-Exertional Malaise (PEM): a delayed crash in energy, cognition, and function after activity
  • Persistent, disabling fatigue not relieved by rest
  • Cognitive difficulties (“brain fog”) such as poor memory and concentration
  • Unrefreshing sleep and disrupted sleep patterns
  • Pain, including muscle aches, joint pain, and headaches
  • Sensitivity to stimuli, such as light, sound, touch, and movement
  • Orthostatic intolerance, such as dizziness or nausea when standing or sitting upright

How Severe Can ME Be?
ME can vary greatly from person to person but what everyone has in common is a significant reduction in physical and mental exertion capabilities. This often leads to reductions in the ability to work and socialise.

Around 25% of people with ME are severely or very severely affected - usually housebound or bedbound, requiring significant support from loved ones or professional carers to accomplish daily tasks like cooking, cleaning and personal care.

Learn more from Action for ME on severity levels

What Causes ME?
The exact cause isn’t fully understood, but most people develop ME following a viral infection. Emerging research points to dysfunctions in the immune system, nervous system, and energy metabolism.

There is desperate need for more funding into research to find causes and treatments. The DecodeME study is currently looking at genetic markers for the condition and is one of the largest studies to date. Click below for more info.
Explore the DecodeME genetic study

How is ME Managed?
There is currently no cure or approved treatments for ME - just management, which focuses on:

  • Pacing: balancing activity with rest to avoid crashes
  • Symptom relief: addressing sleep, pain, and other issues
  • Environmental adaptations: managing light, noise, and sensory input
  • Support: practical help from family, carers, or services

Where to Get Support
Several organisations offer trusted resources, advocacy, and community support in the UK:

  • Action for ME - offers bursaries for specialist doctor, physio, counselling and chaplain services
  • ME Association - offers advice and resources
  • ME Action UK - runs campaigns to raise awareness and improve political policies