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Categories of ME/CFS and Levels of Disability

Posted Aug 26 2008 4:29pm
Not everyone with ME is affected the same way or to the same extent. Sufferers can be catergorised under one of three levels - mild, moderate or severe.



Anyone suffering with the mild form may still be able to work. However, some area of their life will suffer as a result of doing so. Perhaps their social life will be drastically reduced or their home chores will be neglected. Maybe they will come home after work and immediately crash on the sofa or in bed; unable to continue with anything else until they've had a few hours of sleep. Their weekends may be spent resting in front of the television or in bed. They will likely feel that something is 'not quite right'. They will probably have had every test known to man but have been told that they are completely healthy. Still they feel that something just doesn't sit right.



The mild sufferer may experience episodes of weakness and dizziness, low blood sugar, nausea, headaches or IBS (to name but a few symptoms). They are likely to have to make adjustments to daily living. There will be periods when they feel perfectly well, but any emotional, mental of physical stressors are likely to bring on another episode of poor health.



The moderate sufferer is probably unable to work and will often be confined to the home. Any activity is likely to bring on an attack and may result in leaving the sufferer bedridden for days or weeks if frequent rest breaks are not taken. Some moderate sufferers are unable to walk unaided.



Severely affected sufferers are generally bedridden for a large part of the time. They will be completely incapable of performing even the simplest of tasks, such as washing and preparing meals. They are likely to be reliant on a carer and will probably require a wheelchair to get about. The most severest will be unable to swallow or feed themselves and will probably require tube-feeding.



The following extract is useful for gauging levels of disability and often sufferers use scales such as these to measure improvement or degeneration of symptoms. I developed a scale to include my own circumstances and have used it diligently to record my own condition changes. (see scale titled PERSONAL ABILITY SCALE). This will give you an idea how you can use published scales to develop your own.



M.E/C.F.S Disability Scale

0% 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. Occasional 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 living. Unable to work part-time in a job involving frequent physical exertion. May be able to work. 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 strenuous physical tasks. Able to perform light duties or desk work for several hours a day, provided adequate rest periods are provided.

60% Moderate symptoms at rest. Moderate to sever symptoms following any form of physical or mental exertion. Unable to carry out strenuous duties. Able to carry out light duties/desk work for one to three hours a day, provided adequate rest periods are available. Generally not confined to the house.

70% Moderate to severe symptoms at rest. Severe symptoms follow any physical or mental activity. Able to perform desk work 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 minimal range of physical activities relating to personal care (e.g. washing, bathing) Frequently unable to leave the house and may be confined to a wheelchair or bed for much of the day. Unable to concentrate for 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 functioning (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.

(extract taken from Dr Charles Sheppard's book " Living with M.E. .")

Living with M.E.

PERSONAL ABILITY SCALE

10 - FIT AND WELL (Pre-illness Energy Level)

No symptoms at rest or following activity. Capable of full-time work, housework and active social life.

9 - GENERALLY WELL.

No symptoms at rest. Occasionally mild symptoms may follow activity. Able to perform full-time work, housework but limited social life.

8 - OCCASIONAL MILD SYMPTOMS AT REST.

More noticeable symptoms following activity. Some restriction of capabilities which require physical exertion. Able to work full-time and do housework but need to rest during the evening and weekend in order to perform well at work during the week. No social life.

7 - MILD SYMPTOMS AT REST.

Limited ability to carry out some tasks which require physical exertion. May be able to work full-time but probably not in a teaching role due to physical and mental effort required. Could work part-time in teaching. Housework suffers.

6 - MILD OR MODERATE SYMPTOMS AT REST.

Variable ability to carry out tasks associated with normal daily activity. Unable to work part-time in a teaching role due to physical and mental effort required. May be able to perform part-time homework for up to four hours a day. Able to perform housework duties for up to an hour a day. Require frequent rest breaks throughout the day including a short afternoon nap. Able to go for a short ten - fifteen minute walk.

5 - 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 housework for half an hour, wash the dishes and use the computer for several hours a day provided adequate rest periods are provided. Require an afternoon nap. Able to go for a short five - ten minute walk provided rest follows this activity.

4 - MODERATE SYMPTOMS AT REST.

Moderate to severe symptoms following any form of physical or mental exertion. Unable to carry out any strenuous activity. Able to carry out light housework/wash the dishes for half an hour and computer work for one or two hours per day but require frequent rest periods throughout the day. Require an afternoon nap. Spending most time in the house but able to venture out for a short five minute walk if feeling strong enough.

3 - MODERATE TO SEVERE SYMPTOMS AT REST.

Severe symptoms follow any physical or mental activity. Able to bath/shower and wash hair but need to lie down after doing so. Able to use the computer for a maximum of one or two hours during the day as long as activity broken up into small bites. Most of the day spent on the couch. Require an afternoon nap. Confined to the house.

2 - MODERATE TO SEVERE SYMPTOMS AT REST.

Able to self-care ie bath/shower but unable to wash hair; need to lie down after doing so. Unable to leave the house and confined to bed for much of the day. Able to prepare breakfast and light lunch dishes. Unable to concentrate more than short periods of time. Able to watch television or read for very short periods of time.

1 - SEVERE SYMPTOMS AT REST.

Bedridden. Able to wash in the bath but not take a shower. Marked problems with mental function (e.g. memory, concentration) but able to read for very short periods of time (5 or 10 minutes at a time). Require a great deal of support from husband in terms of preparing all meals.

0 - SEVERE SYMPTOMS ON A CONTINUAL BASIS.

Bedridden. Require full support from husband to prepare all meals. Dependent on my husband to wash me in the bath or bed. Able to feed myself by mouth, turn myself in the bed and use the toilet.



I consider myself to be moderately affected (with episodes of severe flare-up); I have never needed a wheelchair or a walking stick - although I do have great difficulty walking during relapses - thus I have adapted the scale to fit my own personal degree of disability/ability. If I were to worsen to the extent that I needed a wheelchair or required tube-feeding, then I would need to rewrite the scale. Hopefully this gives you some idea of how useful these scales can be.



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