Copyright
© by Jodi Bassett, June 2005
Taken from www.ahummingbirdsguide.com
|
A
Hummingbirds Guide to ME’s |
|
3
|
|
Compiled by Jodi
Bassett, 2005. Taken from www.ahummingbirdsguide.com
|
|
FULLY RECOVERED |
|
|
100% |
An unrestricted (pre-illness) level of physical activity is possible.
|
VIRTUALLY RECOVERED
|
|
|
95% |
A high level of physical activity is possible, around 95% of
pre-illness capabilities. Able to cope physically with full-time study or
work without difficulty, plus enjoy a full and active social life. |
MILDLY AFFECTED
|
|
|
90% |
A high level of physical activity is possible, around 85 - 95% of
expected. Minimal restrictions apply for activities involving exertion only.
Able to work full time with difficulty in jobs requiring exertion. |
|
|
|
|
80% |
Physical activity is at
around 70 - 80% of expected, a daily activity limit is clearly noted. Unable
to work full-time in jobs requiring physical exertion, but able to work
full-time in lighter activities if hours are flexible. Social activities
requiring physical exertion may be difficult. |
MODERATELY AFFECTED
|
|
|
70% |
Physical activity is at around 50 - 60% of expected. Unable to
perform strenuous tasks without difficulty, but able to work part-time in
light activities or deskwork for 5 – 7 hours a day, although rest periods are
required. Physical abilities degenerate significantly with sustained
exertion. |
|
|
|
|
60% |
Physical activity is at around 40 - 50% of expected. Unable to
perform strenuous tasks, but able to work part-time in light activities or
deskwork for 4 - 5 hours a day if requirements for quiet and resting are met.
Physical abilities degenerate significantly with sustained exertion.
Physically undemanding social activities are possible. |
|
MODERATE TO SEVERELY
AFFECTED |
|
|
50% |
Overall activity level reduced to around 30% of expected. May be
unable to walk without support much beyond 100/200m, a walking stick or
wheelchair may be used to travel longer distances. Several hours of deskwork
may be possible each day if requirements for quiet and resting are met.
Physically undemanding social activities are possible. |
|
|
|
|
40% |
Overall physical activity level reduced to around 20% of expected.
Not confined to the house but may be unable to walk without support, much
beyond 50/100m, a wheelchair may be used to travel longer distances. Requires
3 or 4 regular rest periods during the day, only one ‘large’ activity
possible per day usually requiring a day or more of rest in-between. |
|
SEVERELY AFFECTED |
|
|
30% |
Overall physical activity level reduced to around 10% of expected.
Usually confined to the house but may occasionally (and with a significant
recovery period) be able to take a short wheelchair ride or walk, or be taken
to see a doctor. Most of the day needs to be spent resting except for a
period of several hours interspersed throughout the day when small tasks may
be completed (or one larger one). Activity is mostly restricted to managing
the tasks of daily living and some assistance with or modification of tasks
is often required. |
|
|
|
|
20% |
Overall physical activity level reduced to around 5% of expected.
Usually confined to the house but may very occasionally (with a recovery
period of a week or more) be able to take a short wheelchair ride or walk, or
be taken to see a doctor. Bedbound or couch-bound for 21+ hours a day.
Activity is restricted almost exclusively to managing the tasks of daily
living and some assistance with or modification of tasks is necessary. |
|
VERY SEVERELY AFFECTED |
|
|
10% |
Overall physical activity level severely reduced. No travel outside
the house is possible. Bedbound the majority of the day (22+ hours) but may
(with difficulty and an exacerbation of symptoms) be able to sit up, walk or
be pushed in a wheelchair for short periods/distances interspersed throughout
the day (to the bathroom or to travel from room to room). Almost all tasks of
daily living need to be done by others and/or heavily modified. Eating may be
very difficult. |
|
|
|
|
5% |
Overall physical activity level very severely reduced. No travel
outside the house is possible. Close to completely bedbound (lying flat in
bed 23.5+ hours a day). May sometimes (with difficulty and with an
exacerbation of symptoms) be able to sit up, walk or be pushed in a
wheelchair for very short periods/distances interspersed throughout the day
(to the bathroom or to travel from room to room). All tasks of daily living
need to be done by others and/or very heavily modified. Eating and drinking
may be very difficult. |
EXTREMELY
SEVERELY AFFECTED
|
|
|
1% |
Completely bedbound and may be unable to turn or move in bed (or at
all) unassisted. Eating is extremely difficult and liquid food may be
necessary (little and often). Swallowing liquids may also be difficult or
impossible and in some cases nasal-feeding tubes may be required. Unable to
care for oneself at all. Bed-baths (and other personal care tasks) undertaken
by a carer or family member may cause severe relapses in symptoms and so only
be able to be attempted occasionally. |
|
A
Hummingbirds Guide to ME’s |
|
3
|
|
Compiled by Jodi
Bassett, 2005. Taken from www.ahummingbirdsguide.com
|
|
FULLY RECOVERED |
|
|
100% |
An unrestricted (pre-illness) level of cognitive functioning is
possible. |
VIRTUALLY RECOVERED
|
|
|
95% |
A high level of cognitive functioning is possible,
around 95% of what was possible pre-illness. Able to cope on a cognitive
level with full-time study or work without difficulty, plus enjoy a full
social life. |
MILDLY AFFECTED
|
|
|
90% |
A high level of
cognitive functioning is possible, around 85 - 95% of expected. Minimal
restrictions apply for activities which demand a high standard of cognitive
functioning only. Unable to manage full-time study or work
without difficulty in jobs which are excessively demanding on a cognitive
level.
|
|
|
|
|
80% |
Cognitive functioning is at around 70 - 80% of expected, a daily
cognitive activity limit is clearly noted. Unable to work full-time in jobs
that are demanding on a cognitive level, but can work full-time in less
demanding jobs if hours are flexible. Some restrictions on social life. |
MODERATELY AFFECTED
|
|
|
70% |
Cognitive functioning is at around 50 - 60% of expected. Unable to perform
tasks which are excessively demanding on a cognitive level, but can complete
lighter activities for 5 – 7 hours a day although rest periods are required.
Cognitive functioning degenerates significantly in a crowded, noisy or busy
environment or with sustained and/or high level use. Social life may be
moderately affected. |
|
|
|
|
60% |
Cognitive functioning is at around 40 - 50% of expected. Unable to
perform tasks which are excessively demanding on a cognitive level, but able
to work part-time in lighter activities for 4 - 5 hours a day (or perhaps
longer at a reduced quality level) if requirements for quiet and resting are
met. Cognitive functioning degenerates significantly in a crowded, noisy or
busy environment or with sustained and/or high level use. Quiet, non-mentally
challenging social activities possible. |
|
MODERATE TO SEVERELY
AFFECTED |
|
|
50% |
Cognitive functioning is reduced to around 30% of expected. Unable to
perform mentally challenging tasks, but able to complete simpler cognitive
tasks (study or work) for 3 – 4 hours a day (or perhaps longer at a lower
quality level) if requirements for quiet and resting are met. Concentration
and cognitive ability are significantly affected. Following the plots of TV
shows or books may be difficult. Non-mentally challenging social activities
possible on a limited basis. |
|
|
|
|
40% |
Cognitive functioning is reduced to around 20% of expected. Unable to
perform mentally challenging tasks easily or often, but able to complete less
complex cognitive tasks for 2 – 3 hours a day (or perhaps longer at a lower
quality level) if requirements for quiet and resting are met. Concentration,
memory and other cognitive abilities are significantly affected. Following
the plots of TV shows or books may be difficult. Non-mentally challenging
social activities possible on a limited basis. |
|
SEVERELY AFFECTED |
|
|
30% |
Cognitive functioning is reduced to around 10% of expected. Unable to
perform mentally challenging tasks easily or often, but able to complete less
complex cognitive tasks for 1 – 2 hours a day (or perhaps longer at a lower
quality level) if requirements for quiet and resting are met. Concentration,
memory and other cognitive abilities are significantly affected at all times
and may be severely affected during relapses. Concentration for more than
half an hour at a time may be extremely difficult. Following the plots of TV
shows or books may be difficult or impossible. Non-mentally challenging
social activities possible on a very restricted basis. |
|
|
|
|
20% |
Cognitive functioning is reduced to around 5% of expected. Unable to
perform even moderately mentally challenging tasks easily or often, but able
to complete less complex cognitive tasks for an hour or so a day (or perhaps longer
at a lower quality level) if requirements for quiet and resting are met.
Concentration, memory and other cognitive abilities are significantly
affected at all times and may be severely affected during relapses.
Concentration for more than 10 to 15 minutes at a time may be extremely
difficult. Following the plots of TV shows or books may be difficult or
impossible. Non-mentally challenging social activities possible occasionally
for short periods. |
|
VERY SEVERELY AFFECTED |
|
|
10% |
Cognitive functioning is reduced to less than 5% of expected. Able to
complete simple cognitive tasks for 10 – 30 minutes or so a day (or perhaps
longer at a lower quality level) if requirements for quiet and resting are
met. Concentration, memory and other cognitive abilities are severely
affected. Concentration may be extremely difficult. Only short periods of TV,
radio or reading are possible. A friend can be seen for 10 - 30 minutes once
a week or so. |
|
|
|
|
5% |
May be able to complete simple cognitive tasks such as talking,
listening to speech or reading (with difficulty) for several 2 – 10 minute
periods throughout the day if requirements for quiet and resting are met.
Concentration, memory and other cognitive abilities are very severely
affected. Concentration may be extremely difficult. There may be an inability
to maintain full consciousness throughout the day. No TV is possible but
quiet music or an audio book may be listened to for short periods. A friend
can be seen for a few minutes. |
EXTREMELY
SEVERELY AFFECTED
|
|
|
1% |
Concentration, memory and other cognitive abilities are extremely
severely affected. Achieving even a low level of concentration may be
extremely difficult or impossible and there may be a high degree of cognitive
confusion as a result. No TV or radio is possible. There may also be a
difficulty maintaining consciousness for more than a few moments or minutes
at a time. Any visitor to the room is almost impossible. Talking, even to the
carer/family, is often impossible. |
|
A
Hummingbirds Guide to ME’s |
|
3
|
|
Compiled by Jodi
Bassett, 2005. Taken from www.ahummingbirdsguide.com
|
|
FULLY RECOVERED |
|
|
100% |
No symptoms |
VIRTUALLY RECOVERED
|
|
|
95% |
No symptoms at rest. Mild symptoms on occasion following strenuous
physical or mental activity but recovery is complete by the next day. |
MILDLY AFFECTED
|
|
|
90% |
No
symptoms at rest. Mild symptoms (1 – 3/10) for several
hours or days following strenuous physical or mental activity.
|
|
|
|
|
80% |
Mild symptoms (1 – 3/10) at rest, worsened to mild/moderate (4 or
5/10) for several hours or days following strenuous physical or mental
activity beyond the person’s limits. |
MODERATELY AFFECTED
|
|
|
70% |
Mild - mild/moderate symptoms (1 - 5/10) at rest, worsened to
moderate (6 or 7/10) for several hours or days following physical or mental
activity beyond the person’s limits. |
|
|
|
|
60% |
Mild/moderate symptoms (4 or 5/10) at rest. There is mild/moderate
pain and/or sensations of illness/dysfunction throughout the body and brain
for some parts of the day. Increasing moderate symptoms (6 or 7/10) for
several hours, days or weeks following physical or mental activity beyond the
persons limits. |
|
MODERATE TO SEVERELY
AFFECTED |
|
|
50% |
Moderate symptoms (6 or 7/10) at rest. There is moderate pain and/or
sensations of illness/dysfunction throughout the body and brain for
significant periods of the day. Increasing moderate (and occasionally severe
– 8/10) symptoms for several hours, days or weeks following physical or
mental activity beyond the persons limits which may persist for hours, days
or a week or more afterward. |
|
|
|
|
40% |
Moderate (6 or 7/10) and occasionally severe (8/10) symptoms at rest.
There is moderate pain (6 or 7/10) and/or sensations of illness/dysfunction
throughout the body and brain for significant periods of the day. Increasing
moderate and sometimes severe symptoms for several hours, days or several
weeks or more following physical or mental activity beyond the persons limits. |
|
SEVERELY AFFECTED |
|
|
30% |
Moderate to severe symptoms (6 – 8/10) at rest. There is moderate to
severe pain (6 – 8/10) and/or sensations of illness/dysfunction throughout
the body and brain for much of the day. Severe symptoms (8/10) following any
physical or mental activity with a recovery period of hours, days or several
weeks or months or more. It is all the person can do to just get through one
day at a time. |
|
|
|
|
20% |
Severe symptoms (8/10) at rest and following even trivial physical or
mental activity with a recovery period of hours, days or several weeks or
months or more. There is severe pain (8/10) and/or overwhelming sensations of
illness/dysfunction throughout the body and brain for all but a few hours of
the day. In some patients only small amounts of stimulus can be tolerated for
short periods a few times a day. It is all the person can do to just get
through the day a few hours at a time. |
|
VERY SEVERELY AFFECTED |
|
|
10% |
There is severe pain (8/10) and/or overwhelming sensations of
illness/dysfunction throughout the body and brain for all but a few short
periods in the day – worsened to increasing severe or very severe symptoms (8
or 9/10) following even trivial physical or mental activity with a recovery
period of hours, days or several weeks or months or more. In some patients
only small amounts of stimulus can be tolerated for short periods. It is all
the person can do to just get through the day one hour at a time. |
|
|
|
|
5% |
There is severe pain (8/10) and/or overwhelming sensations of
illness/dysfunction throughout the body and brain almost continually -
worsened to very severe (9/10) or extremely severe (10/10) following even
trivial physical or mental activity with a recovery period of hours, days or
several weeks or months or more. In some patients any type of stimulus is
intolerable, even very low levels of light, noise, movement and motion are
excruciating for more than very short periods. The smallest physical
movements bring extreme exacerbations in symptoms. Intellectual activity is
similarly affected. It is all the person can do to just get through the day
one minute at a time. |
EXTREMELY
SEVERELY AFFECTED
|
|
|
1% |
There is very severe (9/10) pain and/or overwhelming sensations of
illness/dysfunction throughout the body and brain continually - worsened to extremely severe (10/10) by even
trivial physical or mental activity with a recovery period of hours, days or
several weeks or months or more. In some patients any type of stimulus is
intolerable, even very short/low exposures to light, noise, movement and motion are excruciating and may require a long recovery
period. The smallest physical movements bring intense exacerbations in
symptoms. Mental activity is similarly affected. It is all the person can do
to just get through the day one second at a time. |
These scales are designed to be used by Myalgic Encephalomyelitis sufferers to measure improvements and changes over different aspects of their illness over time. These scales are not intended for medical use, I am not a medical doctor.
The scale is in three parts because cognitive abilities,
physical abilities and symptom severity are often not all be
equally affected in each patient. A scale with more than one category should
ensure greater accuracy and also hopefully be more encouraging as there is a
greater likelihood that you'll score a bit higher in at least one category
compared to the other two.
Some suggestions
on how you might like to use these scales:
1. Don't forget that if you are somewhere between 30% and
40% (for example), you can rate yourself as somewhere between the two – 35%.
2. You can make charting your progress as simple or as
complicated as you like. A simple way to use the scales would be to just write
down your scores on each of the three scales along with the date and to keep
rating yourself on the scales again every few months. If you'd like a more
detailed account you could also:
·
Rate yourself separately for good days
and bad days. (eg. On a good day my physical abilities
are at 50%, on a bad day I'm at 30%)
·
Few people will find that this or any
other chart describes their exact combination of symptoms or experience of the
illness perfectly, so you might also like to either
modify the chart so that it more fully describes your own symptoms, deleting
any bits which don't apply to you and perhaps adding in a few extra bits which
do. An easier way to do this might be to just write a few short notes about how
you fit in each category (eg. I scored 20% on the cognitive ability scale, but
my ability to handle sensory input is at about 10%.)
Terminology used in the scales
Resting: means completely different things
at different severity levels. For the mildly ill being at rest may mean
watching TV or perhaps sitting in a chair reading a book or having a quiet
night in with friends. For the severely ill, these things are not at all
restful and indeed would provoke severe relapse.
For the very severely ill, resting means lying down in a
dark room, in silence and with no inputs at all (such as TV or radio or light)
and not moving at all physically or exerting yourself mentally either. For the
very severely ill a better term would be complete incapacitation, rather than
'resting.' The term resting also implies that the inactivity is optional and
this is often not the case in the severely ill who are often 'resting'
(incapacitated) because it is physically impossible for them to do
anything else.
For moderately ill patients resting means something
somewhere between the two extremes, and so on.
Sensory input: includes light,
noise, movement, motion, vibration, odours, touch.
Cognitive abilities: when rating
cognitive abilities it is the persons intellectual capabilities which are being
referred to, not their state of mental or emotional health which may be at
quite a different level altogether.
Symptom
severity: on a scale of one to ten means:
Mild symptoms =1/10 - 3/10
Symptoms present but at so low a level you can just about
forget they are there most of the time.
Mild/moderate symptoms = 4/10 – 5/10
Moderate symptoms = 6/10 – 7/10
Severe symptoms = 8/10
Very severe symptoms = 9/10
Extremely severe symptoms = 10/10
As far as you are concerned; being eaten alive by a tiger
could NOT hurt any more, or feel any worse than this does, nothing could. Absolute agony.
A note on the percentages given in the scales
As you can see, the different percentages on the scale are
not aligned with the exact percentage of a persons
ability which remains. ie. Being 30% able does not
actually mean you can do 30% of what you could pre-illness etc. The scale was
designed this way intentionally for two reasons: 1. Practicality, and 2. out of
consideration for the severely affected. See the ‘ME Ability
Scale’ page on the website for more information (and a longer explanation).
This text can be downloaded in a printer friendly Word
format, PDF
format or as a Large-print
PDF
Permission is given for this document to be freely
redistributed by e-mail or in print for any
not-for-profit purpose provided that the entire text (including this notice and
the author’s attribution) is reproduced in full and without alteration.