ME/CFS can vary greatly in its severity:
mild is the starting point, next comes
moderate, then
severe. And for extreme cases, there is the
very severe category.
These levels of severity are most easily understood in terms of what activities you are able to perform:
● Those with mild ME/CFS may be working full or part time, but struggle to do so. Of necessity they may have stopped or curtailed all leisure and social pursuits.
● Those with moderate ME/CFS are generally not able to work, probably don't leave the house much, have to perform domestic chores slowly with breaks and rests, and may need 1 or 2 hour's naps in the middle of day.
● Those with severe ME/CFS are more-or-less fully housebound, and likely bedbound (or lying horizontal on a sofa) for much of the day. They are unable to leave the house except on rare occasions, and dependent on a wheelchair for mobility. They find domestic chores like cooking or any form of housework very difficult or impossible.
● Those with very severe ME/CFS will bedbound nearly 24 hours day, except for a few minutes each day to go to the bathroom. Dependent on help for all daily care. Often unable to tolerate any noise, and are generally extremely sensitive to light.
Here are some descriptions from various sources of the mild, moderate, severe, and very severe levels of ME/CFS:
International Consensus Criteria
Mild — an approximate 50% reduction in pre-illness activity level
Moderate — mostly housebound
Severe — mostly bedridden
Very severe — totally bedridden and need help with basic functions
NICE guidelines (similar to the
CFS/ME Working Group's 2002 Report, page 27)
People with
mild ME/CFS are mobile, can care for themselves and can do light domestic tasks with difficulty. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often take days off, or use the weekend to cope with the rest of the week
People with
moderate ME/CFS have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work, school or college and need rest periods, often sleeping in the afternoon for 1 or 2 hours. Their sleep at night is generally poor quality and disturbed.
People with
severe ME/CFS are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing, cleaning teeth). They have severe cognitive difficulties and depend on a wheelchair for mobility. They are often unable to leave the house, or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed, and are often extremely sensitive to light and noise.
NHS Encyclopaedia: Chronic fatigue syndrome
Most cases of CFS are mild or moderate, but up to one in four people with CFS have severe or very severe symptoms. These are defined as follows:
Mild: you are able to care for yourself, but may need days off work to rest.
Moderate: you may have reduced mobility, and your symptoms can vary. You may also have disturbed sleep patterns, and sleep in the afternoon.
Severe: you are able to carry out minimal daily tasks, such as brushing your teeth, but occasionally you may need to use a wheelchair. You may also have difficulty concentrating.
patient.info
•
Mild: the patient is mobile, can care for themself and do light housework with difficulty.
•
Moderate: the patient has reduced mobility and is restricted in all activities of daily living. They have usually stopped work or education. There is poor sleep quality and duration.
•
Severe: the patient is unable to do anything for themself. They suffer severe cognitive difficulties and depend on a wheelchair. They spend most of their time in bed and are sensitive to light and noise.
www.betterhealth.vic.gov.au
Mild – the person’s activity is reduced by at least 50 per cent.
Moderate – the person is mostly housebound.
Very severe – the person is bed-bound and dependent on help for all daily care.
Around 25 per cent of people with ME/CFS will have a
mild form and be able to get to school or work either part-time or full-time, while reducing other activities. About 50 per cent will have a
moderate to severe form and not be able to get to school or work. Another 25 per cent will experience
severe ME and be housebound or bedbound.
If we take the full ME/CFS scale:
Very Severe —
Severe —
Moderate —
Mild —
Remission
then any time an ME/CFS patient is able, as a result of treatment, to move up 1 step on this scale (eg, move from severe to moderate, or move from mild to remission), that can be classed a major improvement.
It is interesting to try to map these mild, moderate and severe levels of ME/CFS onto the
Karnofsky Scale, which is a general scale used to measure the severity of illness.
In my own interpretation, on the Karnofsky Scale from 0 to 100, I would say that:
Perfect health = 100
Mild ME/CFS = 80 to 90
Moderate ME/CFS = 60 to 70
Severe ME/CFS = 40 to 50
Very severe ME/CFS = 20 to 30
Here is the
Karnofsky Scale for ease of reference:
The Karnofsky Scale
100— Able to work. Normal; No complaints; No evidence of disease.
90 — Able to work. Able to carry on normal activity; Minor symptoms.
80 — Able to work. Normal activity with effort; Some symptoms.
70 — Independent; not able to work. Cares for self; Unable to carry on normal activity.
60 — Disabled; dependent. Requires occasional assistance; cares for most needs.
50 — Moderately disabled; dependent. Requires considerable assistance and frequent care.
40 — Severely disabled; dependent. Requires special care and assistance.
30 — Severely disabled. Hospitalized, death not imminent.
20 — Very sick. Active supportive treatment needed.
10 — Moribund. Fatal processes are rapidly progressing.
Thus with the above interpretation, a
20 point increase and improvement on the Karnofsky Scale corresponds to moving up one level, eg, from severe to moderate ME/CFS, or from moderate to mild ME/CFS.
Further reading:
Mild, Moderate, Severe and Very Severe PVFS / CFS / ME in Patients’ Own Words