The illness, sometimes called chronic fatigue syndrome or ME/CFS, affects all ages, genders and ethnicities. On its worst days it leaves people housebound or bedbound and severely disabled. It has been found to cause problems in many bodily systems including brain and muscles, digestion, cardiac and immune system. It can also cause extreme and unrelenting pain, fatigue, a worsening of symptoms after physical or mental activity and an inability to concentrate. People can become very sensitive to light and sound, foods and medicines. They can have sore throats and tender lymph nodes in the neck and armpits.
There is no one clear cause for ME/CFS. It seems to be triggered by infection, usually glandular fever or Epstein-Barr virus, but some people get it after other infections such as shingles and herpes B, influenza, Ross River virus and gastroenteritis. It is thought that the disease is triggered by changes in the body’s energy production and the way the body responds to physical or mental stress. It is also possible that ME/CFS can run in families.
It is important that people with ME/CFS see a doctor who understands the condition and can refer them to a specialist team if needed. Specialist teams may include a range of healthcare professionals with training in ME/CFS and specialisms such as rheumatology, rehabilitation medicine, endocrinology, neurology, immunology and general practice. They will be able to develop a care and support plan with the person and their family or carers.
Adults with ME/CFS often develop their symptoms suddenly after an infection, but they can also happen after a surgical procedure or when there is a major hormonal shift such as during pregnancy and menopause. They experience unrefreshing sleep, difficulty concentrating, periods of bloating and constipation, and may have a number of other symptoms such as PEM, cognitive impairment and orthostatic intolerance.
PEM is a key symptom of ME/CFS, and occurs after physical, mental or emotional exertion that wouldn’t have caused symptoms before the illness. It is a worsening of a wide range of symptoms and can last for up to 24 hours or more, and can occur even after activities such as reading or brushing teeth. It can be triggered by any activity and is sometimes delayed for up to three days.
Unlike other conditions, there are no diagnostic biomarkers for ME/CFS. A diagnosis is made using a clinical assessment and the criteria of ME/CFS, which includes post-exertional malaise (PEM). People with ME/CFS can be diagnosed at any age but it is more common in children and adolescents. It is estimated that between 0.4-1% of the population is affected by ME/CFS.