What is ME?
What is ME? Myalgic encephalomyelitis (ME) also known as encephalomyelitis is a long-term, fluctuating, neurological disease. ME symptoms affect many systems of the body, including the nervous and immune systems. This article covers symptoms, ME treatment and support.
ME is a debilitating disease. Around 25% of people with ME are severely affected by the condition and are housebound or bedbound.
Is ME a serious condition?
ME is not a minor illness and can vary in severity from person to person.
National Institute for Health and Care Excellence (NICE) guidelines for ME (published October 2021) describes four levels of severity of ME:
- People with mild ME can look after themselves and do some light domestic tasks but may have difficulties with mobility. Most are still working or in education. They often have reduced hours and take days off.
- If you have moderate ME, you may have reduced mobility and are restricted in all activities of daily living. You may have peaks and troughs in symptoms and ability to do activities. You have usually stopped work or education.
- Those with severe ME are unable to do any activity for themselves or can carry out minimal daily tasks such as cleaning teeth. They have severe cognitive difficulties. They are often housebound and may also spend most of their time in bed.
- If you have very severe ME, you are in bed all day and dependent on care. They need help with personal hygiene and eating. Some people may not be able to swallow. They are very sensitive to sensory stimuli.
Why is it called ME?
ME is the medical name that was introduced by The Lancet to describe an outbreak at the Royal Free Hospital in London in 1955.
The condition was renamed as CFS (Chronic Fatigue Syndrome) by doctors in the UK but people with ME, charities and some health professionals, do not think CFS is a fitting name to highlight the extent of the impact on someone with ME.
ME is the name preferred by those who have the condition.
How common is ME?
The condition is estimated to affect over 260,000 people in the UK.
It tends to affect people aged 20-40.
However, there are also children and people aged 65+ with ME
What causes ME?
The causes of ME are unknown.
ME is thought to be triggered by one of these factors:
- a viral or bacterial infection.
- a traumatic event.
- hormonal imbalance.
- immune system issues.
- genes.
According to the ME Association, ME research has found major abnormalities in a person with ME’s central nervous system, immune system, endocrine (hormone producing) system and muscles (which cause energy metabolism impairment).
People with ME often report that they don’t feel as though they have recovered from symptoms even after an infection has passed.
