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