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Spectrum of Severity
The severity of ME/CFS is on a spectrum. The level of symptoms and severity experienced by each person with ME/CFS is unique and is likely to fluctuate over time.
Some people do improve or go into remission for periods of time. Often those who are most severely unwell are those who were not given the advice to rest and pace activites when first unwell.
Historically, four general terms are used to categorise the wide spectrum of disease severity and functional impairment seen in ME/CFS: Mild, Moderate, Severe, Very Severe.
It’s worth noting that a ‘Mild’ level of severity may be close to a 50% reduction in functionality – certainly not a ‘mild’ impact for the person living with it. For others who are in the Mild catgory, they may be able to live a fairly normal life if they avoid exceeding their activity limits.
Mild
Mobile and able to self-care. May be working or attending school, but often with accommodations and by reducing other domestic and social activities.
Severe
Mostly homebound. Limited activities of daily living (e.g., self-care, showering, dressing). Severe cognitive difficulties. May be wheelchair dependent.
Moderate
Reduced mobility and restricted activities of daily living. Requires frequent rest periods and typically not working or attending school.
Very Severe
Bedbound. Unable to carry out most activities of daily living for themselves. Often extreme sensory sensitivity to light, sound, touch, etc. May need total care
Quality of Life
ME/CFS is a disabling illness that affects daily life.
Studies that look at the Health-Related Quality of Life index (HRQoL) consider five dimensions:
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Mobility
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Self-care
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Usual activities
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Pain/discomfort
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Anxiety/depression
Results of studies for people with ME/CFS confirm a significantly lower quality of life than the population mean and the lowest of all the compared conditions.
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ME/CFS – 0.47
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Depression - 0.62
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Multiple Sclerosis – 0.67
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Breast Cancer – 0.75
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General Population – 0.85
