• ME/CFS Ability Scale

    Please Note: The ME/CFS Ability Scale has been drawn up for children and young people. We feel it is equally suited to adults and should only be used as a guide.

    When using this scale it is important to remember that:

    • Flexibility in its use will help all concerned

    • There is no predictable pattern to ME/CFS

    • Many may fall between each noted percentage

    • Fluctuations will occur over short periods of time

    This scale should be viewed flexibly; used to assist children and young people to pick that which best describes their functional ability level. It is important for them to have significant input into their own chart, thus increasing personal control over their illness. It may be that a young person is at a different point on the scale regarding their mental functioning from their physical ability. Clinicians and carers should not view 50% ability as meaning, for example, that a patient is able to walk half the distance of a healthy person. Terms such as 'part-time' should be viewed as a 'few hours', but only the child or young person will really know how much is right for them.

    Predictable Pattern
    It should not be assumed that movement on the scale means the beginning of a continued downward slide or continued improvement. Young people can make sudden, large jumps, or become stable at one level for a time and then make a sudden or gradual move in either direction. Large increases are not, necessarily, indicative of 'being over ME'. Careful and supportive management, with the young patients being able to pace themselves in a way that is most comfortable to them, will see improvement over time. It may take many days to recover from an activity, mental or physical, that pushes them beyond their capability.

    Falling between scales
    Young people may find themselves as falling between the noted points on the scale. They should be encouraged to fit in their own wording that matches their present capacity and functioning.

    Fluctuations on the scale may occur, with variations often seen over single days or weeks, especially if the young patient is expected to do more than can be managed with ease. It may be useful to note the point on the scale on a 'good day' as well as a 'bad day'.

    Original scale published in Somebody Help ME (1995*3) by Jill Moss

    100% No symptoms even following physical or mental activity. Able to study and work full time without difficulty, plus enjoy a social life.

    95% No symptoms at rest. Mild symptoms following physical or mental activity - tire rather easily but fully recovered next day. Able to study or work full time without difficulty but a slight restriction on social life.

    90% No symptoms at rest. Mild symptoms following physical or mental activity - tire easily. Study/work full time with some difficulty. Social life rather restricted with gradual recovery over 2/3 days.

    80% Mild symptoms at rest, worsened to moderate by physical or mental activity. Full time study at school/ college is difficult, as is full-time work, especially if it is a crowded, noisy or busy environment. Home tuition or part-time study without difficulty.

    70% Mild symptoms at rest, worsened to severe by physical or mental activity. Daily activity limited. Part time study at school/college is very tiring, and may be restricting social life. Part time work may be possible for a few hours in the day. With careful pacing out of activities and rest periods, one may discover windows of time during the day when one feels significantly better. Gentle walking or swimming can be beneficial.

    60% Mild to moderate symptoms at rest. Increasing symptoms following physical or mental activity. Daily activity very limited. Study with others or work outside the home very difficult unless additional support is available, e.g. use of a wheelchair/quiet room for a rest period. Short (I-2 hours) daily home study/work may be possible on good days. Quiet, non-active social life possible.

    50% Moderate symptoms at rest. Increasing symptoms following physical or mental activity. Mid-day rest may still be needed. Simple, short (1hr) home study/home activity possible, when alternated with quiet, non-active social life. Concentration is limited. Not confined to the house but may be unable to walk without support, much beyond 100/200m. May manage a trip to the shops in the wheelchair.

    40% Moderate to severe symptoms following any activity. Care must be taken not to over-do one's life style at this stage. Not con-fined to the house but unable to walk much more than 50/I00m, usually requiring aids such as walking stick/crutches. May manage a wheelchair trip to the shops on a quiet day. Requires 3 or 4 regular rest periods during the day. Only one 'large' activity possible per day - friend dropping by or doctor's visit or short home study (half hour at a time) etc - with space usually requiring rest day/s between.

    30% Moderate to severe symptoms at rest. Severe symptoms following any physical or mental activity. Usually confined to the house but may occasionally take a quiet wheelchair ride or very short, gentle walk in the fresh air. Most of the day resting. Very small tasks possible but mental concentration poor and home study difficult. As mentioned in the report on ME to the Chief Medical Officer, (2002*4) and the DFES report on education for children with medical needs (2001*5), children may be too ill to access any education at all. This should be respected and kept under review.

    20% Fairly severe symptoms at rest. Weakness in hands, arms or legs may be restricting movement. Unable to leave the house except very rarely. Confined to bed/settee most of the day but able to sit in a chair for a few, short periods. Unable to concentrate for more than one hour a day but can read for about 5-10 minutes at a time.

    10% Severe symptoms following any activity. Weakness and pain in arms or legs. In bed the majority of the time but feeling more stable and less dizzy. No travel outside the house. Concentration very difficult indeed. A friend can be seen for ten minutes or so.

    5% Severe symptoms almost continuously but may be possible to be propped up in bed for very short periods. Weakness and pain in arms or legs can give rise to paralysis; dizziness and nausea. Small, personal care may be possible (e.g. if washing equipment placed on the bed it may be possible to wash some parts of the body). As with 0%, sudden jerking movements can be a problem and what may be described as panic attacks are felt. No TV is possible but a little quiet music or audio book may be listened to for a few minutes. A friend can be seen for a minute for a hug and a few words.

    0% Severe symptoms on a continuous basis. In bed constantly, feeling extremely ill even with permanent rest. Severe dizziness makes it almost impossible to be propped up in bed for longer than a few minutes at a time. Light and noise are very painful to the eyes and ears - curtains are closed and earplugs are needed. Severe pain almost anywhere in the body with the skin feeling very cold and extremely sensitive to touch. Unable to care for oneself at all; washing needs to be done a tiny bit at times throughout the day. Nausea and severe fatigue make eating extremely difficult. Liquid based food preferred - little and often. Occasionally, nasal feeding tubes are required when the energy to chew is completely spent. Any stimulus worsens the feeling of being severely ill, with no movement in the bedroom preferred. Any visitor to the room is almost impossible. Talking, even to the carer/family, is often impossible. This is often misread as being 'selective mute'. Severe adrenaline rushes felt with heightened sensitivity; jumping and over reacting to doors shutting/door bell ringing, etc. Sleep pattern often completely reversed.

    The ME/CFS Ability Scale is used with the kind permission from AYME