ME/CFS Levels of Severity

Pyrrhus

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How do you know where you fall on the ME/CFS Severity Scale?

There are different ways of classifying how severe one's ME symptoms are. Some of them are easier than others to use. @Hip does a great job of explaining these different ways of classifying the severity of ME below:

Myalgic encephalomyelitis / chronic fatigue syndrome (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 nap 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 usually dependent on a wheelchair for mobility, except for very short walks within the home or garden. 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.
The above description of the mild, moderate, severe and very severe levels of ME/CFS are derived the following sources:



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 SevereSevereModerateMildRemission

then any time an ME/CFS patient is able, as a result of treatment, to move up 1 level 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, severe and very 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.



Other ME/CFS Scales

Click on the blue spoiler buttons below to see various other ME/CFS scales

(I have attempted to map the mild, moderate and severe levels of ME/CFS onto these scales)

The following scale is used on the Phoenix Rising forum to measure ME/CFS severity:
Phoenix Rising Severity and Level of Activity Scale

0 — VERY SEVERE: Bedridden constantly, except to go to bathroom.

1 — SEVERE: Bedridden most of day, very rarely leave house.
2 — SEVERE: Leave house once a week, concentrate 1 hour a day.


3 — MODERATE: Leave house several times per week, 2 hours work/activity a day.
4 — MODERATE: 3 to 4 hours work/activity a day.
5 — MODERATE: 4 to 5 hours work/activity a day.


6 — MILD: 6 to 7 hours activity a day, able to do a part-time job.
7 — MILD: Able to do a full-time job but with difficulty.
8 — MILD: Near-normal life activity level, but still symptomatic.


9 — RECOVERY: Normal life activity level, mild symptoms.
10 — RECOVERY: Fully recovered, or in full remission.

On Dr Martin Lerner's Energy Index Point Score scale, the remission, mild, moderate, severe and very severe levels map out to the following, in my own interpretation:
Energy Index Point Score Scale

0 — Bed-ridden, up to bathroom only.

1 — Out of bed 30 - 60 minutes a day (sitting in chair is out of bed).
2 — Out of bed sitting, standing, walking 1 - 2 hours per day.
3 — Out of bed sitting, standing, walking 2 - 4 hours per day.


4 — Out of bed sitting, standing, walking 4 - 6 hours per day.

5 — Perform with difficulty sedentary job 40 hours a week, daily naps.
6 — Daily naps in bed, may maintain a 40 hour sedentary work week plus light, limited housekeeping and/or social activities.
7 — No naps in bed. Up 7:00 a.m. to 9:00p.m. Able to work a sedentary job plus light housekeeping.
8 — Full sedentary workweek, no naps, some social activities plus light exercise.


9 — Same as 8 above plus exercise approximately 1/2 to 2/3 normal without excessive fatigue, awakens next morning refreshed.
10 — Normal

On Dr David Bell's CFIDS Disability Scale, the remission, mild, moderate, severe and very severe levels map out to the following, in my own interpretation:
100 — No symptoms with exercise. Normal overall activity. Able to work or do house/home work full time with no difficulty.

90 — No symptoms at rest. Mild symptoms with physical activity. Normal overall activity level. Able to work full time without difficulty.


80 — Mild symptoms at rest. Symptoms worsened by exertion. Minimal activity restriction needed for activities requiring exertion only. Able to work full time with difficulty in jobs requiring exertion.

70 — Mild symptoms at rest. Some daily activity limitation clearly noted. Overall functioning close to 90% of expected except for activities requiring exertion. Able to work/do housework full time with difficulty. Needs to rest in day.

60 — Mild to moderate symptoms at rest. Daily activity limitation clearly noted. Overall functioning 70% to 90%. Unable to work full time in jobs requiring physical labour (including just standing), but able to work full time in light activity (sitting) if hours are flexible.


50 — Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity; overall activity level reduced to 70% of expected. Unable to perform strenuous duties, but able to perform light duty or deskwork 4 - 5 hours a day, but requires rest periods. Has to rest/sleep 1-2 hours daily.

40 — Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity. Overall activity level reduced to 50-70% of expected. Able to go out once or twice a week. Unable to perform strenuous duties. Able to work sitting down at home 3-4 hours a day, but requires rest periods.

30 — Moderate to severe symptoms at rest. Severe symptoms with any exercise. Overall activity level reduced to 50% of expected. Usually confined to house. Unable to perform any strenuous tasks. Able to perform deskwork 2-3 hours a day, but requires rest periods.


20 — Moderate to severe symptoms at rest. Unable to perform strenuous activity. Overall activity 30-50% of expected. Unable to leave house except rarely. Confined to bed most of day. Unable to concentrate for more than 1 hour a day.

10 — Severe symptoms at rest. Bed ridden the majority of the time. No travel outside of the house. Marked cognitive symptoms preventing concentration.


0 — Severe symptoms on a continuous basis. Bed ridden constantly, unable to care for self.

On Dr Charles Shepard's ME Disability Scale, the remission, mild, moderate, severe and very severe levels map out to the following, in my own interpretation:
O% - FIT AND WELL FOR AT LEAST THE PAST THREE MONTHS
No symptoms at rest or following activity. Capable of full-time employment.


10% - GENERALLY WELL
No symptoms at rest. Occasionally mild symptoms may follow activity. Capable of most forms of full-time employment.



20% - OCCASIONAL MILD SYMPTOMS AT REST
More noticeable symptoms following activity. Some restriction of capabilities which require physical exertion. Able to work full-time but difficulty with work that requires physical exertion.


30% - MILD SYMPTOMS AT REST
Limited ability to carry out some tasks which require physical exertion. May be able to work full-time.


40% - MILD OR MODERATE SYMPTOMS AT REST
Variable ability to carry out tasks associated with normal daily activity. Unable to work part-time in a job involving frequent physical exertion. May be able to work part-time in other types of employment.
50% - MILD TO MODERATE SYMPTOMS AT REST
Moderate to more severe exacerbation of symptoms following physical and/or mental exertion. Unable to carry out any strenuous physical tasks. Able to perform light duties or deskwork for several hours a day provided adequate rest periods are provided.


60% - MODERATE SYMPTOMS AT REST
Moderate to severe symptoms following any form of physical or mental exertion. Unable to carry out any strenuous duties. Able to carry out light duties/deskwork for one to three hours per day. Generally not confined to the house.


70% - MODERATE TO SEVERE SYMPTOMS AT REST
Severe symptoms follow any physical or mental activity. Able to perform deskwork or light duties for one or two hours during the day. Often confined to the house and may require wheelchair assistance at times.



80% - MODERATE TO SEVERE SYMPTOMS AT REST
May only be able to carry out a very minimal range of physical activities relating to personal care (e.g. washing, bathing). Frequently unable to leave the house and may even be confined to wheelchair or bed for much of the day. Unable to concentrate more than short periods of time.


90% - SEVERE SYMPTOMS AT REST
Bedridden and housebound for much of the time. Experiences considerable difficulties with many aspects of personal care. Marked problems with mental function (e.g. memory, concentration). Requires a great deal of practical support.



100% - SEVERE SYMPTOMS ON A CONTINUAL BASIS
Bedridden and incapable of living independently. Requires a great deal of practical social support.

Jodi Bassett's ME Ability and Severity Scale (this consists of three sub-scales for physical ability, cognitive ability and symptom severity).


Further reading:
Mild, Moderate, Severe and Very Severe PVFS / CFS / ME in Patients’ Own Words

The above is copied from this discussion:

The Mild, Moderate, Severe and Very Severe Levels of ME/CFS
https://forums.phoenixrising.me/thr...evere-and-very-severe-levels-of-me-cfs.60746/
 
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Couple of random comments for the Universe

1)Mild could include Non Refreshing Sleep Issues...as sleep is a big mess in my opinion and experience.

For me, pre-menopause came with big issues with not able to sleep, and anxiety type issues intensified.

It became impossible for me to give presentations, something I did all the time, because I'd never sleep the night before, and then could not see well enough to drive, especially at night or in the rain.

2) an illness which takes almost 50% your activity levels away, is clearly not a mild illness.

Thanks for posting...