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What is ME/CFS? (Extract and more information from What is ME/CFS? | The ME Association)

ME/CFS is recognised as a post-viral fatigue syndrome. It is a long-term, multi-system disease that can have a devastating impact on functional ability and quality of life

No effective drug treatment has yet been developed, and full recovery is rare, but symptoms can stabilise and improve over time with careful management and support.


– It is generally known as ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) although research has yet to conclusively determine causal pathways.
– ME/CFS is classified by WHO ICD-11 as a Post-Viral Fatigue Syndrome (8E-49) and defined as a disorder of the nervous system i.e., neurological. This is accepted by the NHS in each of the devolved countries of the UK and by the UK Government. 
– The NHS digital classification system (SNOMED-CT) also recognises this classification and patients can be recorded as having mild, moderate, or severe ME/CFS on their patient records. 


– ME/CFS has been estimated to effect two hundred and sixty-five thousand people in the UK (0.4 per cent). This is almost double the prevalence of Multiple Sclerosis.
– It is indiscriminate; affecting children, young people, and adults – irrespective of socio-economic background or ethnicity.
– Eighty per cent of those affected are women and it is believed that prevalence may be higher in ethnic minority groups.
– It is the greatest cause of long-term sickness absence from school.
– It is not an uncommon condition, but many who experience symptoms do not have a diagnosis and are not receiving suitable care and support.


– ME/CFS is more disabling and can have a greater impact on quality of life, functional ability, employment, education, and income, than other serious medical conditions like Multiple Sclerosis.
– It is a chronic, long-term disease that can affect people for years or decades. Illness and symptom severities can fluctuate, remain the same, or get progressively worse.
– Most people will experience a severe or even very severe form of the illness at some point, often during the initial acute phase or following a relapse.
– Those very severely affected require 24-hour care and support, will be bedbound, unable to mobilise, feed themselves, or communicate effectively.


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