mecfs info graphic

Image: Summary of Research Avenues (Morten Group, Oxford University)

What is Myalgic Encephalomyelitis / Chronic Fatigue Syndrome? 

Myalgic encephalomyelitis (meaning 'inflammation of the brain and spinal cord with muscle pain'), also known as Chronic Fatigue Syndrome and commonly referred to as ME/CFS, is a chronic, disabling disease affecting many systems of the body, including the nervous system, immune system, endocrine system and metabolism.

Symptoms can vary, but ME/CFS is most characterised by;

  • Post-Exertional Malaise (PEM), an exacerbation of all symptoms after trivial exertion that can last for days, months or years.
  • profound fatigue and exhaustion
  • cognitive dysfunction (most commonly 'brain fog', cognitive overload, diffculties with concentration, memory, difficulty absorbing information, confusion, disorientation, slowed and/or confused speech, word finding, planning)
  • sleep abnormalities
  • flu-like symptoms
  • pain
  • sensitivies to light and sound
  • orthostatic intolerance (inabillity or difficulty in staying upright)  

       *this list is not exhaustive

ME is often referred to by the problematic legacy term “chronic fatigue syndrome” or the acronym ME/CFS. The double-barrelled acronym ME/CFS exists to bridge past terminological failures and the original disease name, meaning many professionals and patients are more comfortable with the term ME.

ME/CFS can severely impair a patients’ ability to conduct their normal lives, yet many struggle with symptoms for years before receiving a diagnosis. It is estimated that ME/CFS affects upwards of 250,000 people in the UK and between 17-30 million worldwide. Many people remain undiagnosed, even after many years of health enquiry.  Approximately 75% of people with ME are women. 

The severity of illness ranges from mild to very severe in disease presentation and can vary over time. 25% of people with ME are housebound or bedbound

There are over 14 different diagnostic criteria for ME, but as yet, no diagnostic tests exisit. In the UK, ME can be diagnosed by a GP or consultant and is made after ruling out other diagnosis and by using the NICE Guildines.

‚ÄčWhat Causes ME/CFS?

The cause of the disease remains unknown, although in many cases, symptoms may have been activated by an infection, virus, or some other stressor / triggering event.