WHAT IS ME/CFS?
ME/CFS is a complex, multi-system, chronic medical condition
It has considerable personal, social and economic consequences
There is a significant impact on a person's quality of life, including their psychological, emotional and social wellbeing
NUMBERS
ME/CFS has been estimated to effect more than 250,000 people in England and Wales (0.4% of the population)
GENDERS
2.4 times as many women affected as men
DEMOGRAPHICS
ME/CFS can affect people of all ages
SEVERE
Approximately 25% have severe disease and are housebound or bedbound
LIFE QUALITY
The quality of life of people with ME/CFS is lower than that of many people with other severe chronic conditions
CAUSE
It is not clear what causes ME/CFS
LIFE AND WORK
Everyday life for people with ME/CFS, their family and carers is disrupted and unpredictable.
Many people with the condition are unemployed, and less than a fifth work full-time.
HEALTH SERVICES
DIAGNOSIS
There is no diagnostic test or universally accepted definition for ME/CFS. People with the condition report delays in diagnosis, and many healthcare professionals lack the confidence and knowledge to recognise, diagnose and manage it
BELIEF
People with ME/CFS report a lack of belief and acknowledgement from health and social care professionals about their condition and related problems, which may lead them to be dissatisfied with care and to disengage from services.
ACCESS
There is unequal access to ME/CFS specialist services across England and Wales with some areas reporting very limited access. It is important this inequity of access is addressed.
WHY IS IT CALLED ME/CFS?
- The terms myalgic encephalomyelitis (ME; or encephalopathy), chronic fatigue syndrome (CFS), CFS/ME and ME/CFS have all been used for this condition and are not clearly defined.
- There is little pathological evidence of brain inflammation, which makes the term ‘myalgic encephalomyelitis' problematic.
- Many people with ME/CFS consider the name ‘chronic fatigue syndrome' too broad, simplistic and judgemental. For consistency, we use the abbreviation ME/CFS.
Source: The 2021 NICE Guideline on ME/CFS (NG206).