• Dr. Bell’s Disability Scale, aimed at adults with ME/CFS
• Three Part ME Ability and Severity Scale, designed especially for those with more severe ME/CFS and comprising scales of physical ability, cognitive ability, and symptom severity. Written by Jodi Bassett.
• Jill Moss’s Ability Scale (shorter version), especially for younger people (school/university age) with ME/CFS. You can see my own decline measured in percentages on this scale over the last 10+ years if you are interested.
• Jill Moss’s Ability Scale (longer version), the same as above but a much longer and more detailed version that above, with more points on it.
• Dr. Charles Shepherd’s Disability Scale, aimed at anybody with ME/CFS. Comes from the UK.
• Shannon West’s Pain Definitions is a personal pain scale posted to LJ by Shannon West.
• Terri Dorothy’s Fatigue Scale, for anybody with fatigue, but designed from a CFS/Fibromyalgia fatigue perspective. Might also be useful for people with other fatiguing illnesses such as Multiple Sclerosis/MS.
• Functionality Levels for Ricky, Start of 2003 – This document came out of Jenn and my discussion of ATP levels and how they related to the “real world”.

Using The Rating Scales

One useful suggestion I have received is that people can track their health over time – many years – by finding which rating scale works the best for you, and then checking your score on that scale every so often (I suggest every 6 months, but whatever works for you) and making a note of the date and your score somewhere. Then you’ll be able to see if your scores are rising, falling, going up and down, staying the same, or whatever it is that they’re doing. This might be helpful to your doctor too, if you print out the rating scale and take along your scores.

But I Can’t Figure Out My Score!

It might be that the scale says something like this for a particular rating:

Moderate symptoms at rest, Increasing symptoms following physical or mental exertion. Regular rest periods needed. Simple short home study possible when alternated with quiet, non-active social life.

… and you match the physical description, but you have particularly bad brainfog and you couldn’t do any home study at all! The important thing to know as that this is NOT UNUSUAL AT ALL! Remember, we know that every single person with CFS or Fibromyalgia has a different set of symptoms. So it makes sense that when somebody tries to reduce those symptoms down into one short paragraph, some of the paragraph won’t fit some people.

There are several ways to still use the scales though, if you want to. You could record the score for your physical ability and your thinking ability separately, so maybe your thinking matches the “60%” description and your physical ability matches the “50%” description. Just make a note of this.

Another way would be to figure out your two scores, body and thinking, and write down the score half way in between as an average score. The main important thing to remember is that if you are using this to track your scores over time, like suggested above, that you do it the same way every time and that if you show a doctor or another medical person, that you tell them what you did.

Rating Scales For Other Diseases

Other rating scales not directly aimed at Fibromyalgia or CFS:

• The Comparative Pain Scale
• The Karnofsky Rating Scale, rating of severe and terminal illnesses and disabilities.
• Brief Pain Inventory (short Form), despite the name its a quite long and involved pain description form.
• Residual Functional Capacity Questionnaire, such as used by the USA Social Security people, I have been told.
• Pain Scale of unknown origin, emailed to me without attribution. If anybody has an attribution for it, I’d be pleased to apply for proper permisions.

Links

Related sites which may be of use:

• Tips on personalising the Randall Chronic Pain Scale to assist in communicating your experience with health-care people. Could be extended to other areas of CFS/FMS quite easily. Here’s one I personalised for myself at some point. Exact year is not known, probably about 2000-ish?
• The Globalized Assessment of Functioning scale is aimed at measuring psychological/psychiatric functioning.
• The Center for Outcome Measurement in Brain Injury has a bunch of useful scales. Unfortunately they’re all in .pdf format so you’ll need a PDF reader (eg Adobe Acrobat – you probably have it) to view them, but there are a few that are appropriate for people with CFS.
• Health Outcome Scales also has many measuring tools in .pdf but some of them are in HTML format as well. These are designed for measuring the health and functioning of geriatric (elderly) patients.

Additions to this page are welcomed! If you know of any scales of this type which are not mentioned here, please contact me or leave a comment.

- Ricky

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This article was originally published at Scales for Measuring Illness Severity and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

Note that this scale measures “upside down” compared to many of the other abilitily scales, with 0% being completely well and 100% being as sick as possible.

The excerpts used here remain copyright © Dr Charles Shepherd 1999, All rights reserved.

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. 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 desk work 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

The book details are:

‘Living With ME’
Copyright © Dr Charles Shepherd 1999
ISBN 0091816793
First published by Trafalgar Square in the UK.

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This article was originally published at Charrles Shepherd’s CFS Disability Scale and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

This isn’t so relevant to me now as it’s nearly 10 years ago that I created it, but it’s interesting and helpful to look back and see what I came up with.

10 – Excruciating Pain

Description: Must attend to pain. Cannot manage to do anything except lie in bed. Probably crying from the pain. I cannot relax my muscles.

8 – Pain Is Difficult To Tolerate

Description: Pain is bad, but I can still do some very simple tasks that don’t require movement or concentration. Perhaps listen to the radio or a book on tape.

When the pain is this bad it’s impossible to keep my muscles relaxed, I can relax them but the minute I take my attention away they tense up. In this state I’m using almost all my energy ‘dealing’ with the pain.

6 – Pain Is Distressing

Description: Pain is fairly bad but I am able to keep on doing most things that are otherwise things I can do (eg no standing for more than a minute or two, etc). Can’t do things that need a lot of thinking, like maths.

In this state I’m using a fair bit of energy ‘dealing’ with the pain. I can be relaxed if I don’t have to move, but moving will make my muscles tense up again.

4 – Pain Is Discomforting

Description: Pain can be ignored if I have something distracting to do and can lie down in a relaxed position – eg good friend to talk to (lying in bed) or a TV show I really really enjoy (lying flat on sofa).

In this state I’m not using up a lot of energy ‘dealing’ with the pain, but am using some. I can stay relaxed as long as I pay attention to staying relaxed when I move.

2 – Pain Is Mild

Description: Only aware of pain when attention is brought to it.

In this state I still hurt, but I’m not really using much energy to deal with it and staying relaxed is automatic.

When: This happens hardly ever. Maybe for an hour or two a month?

0 – No Pain

Description: No pain at all.

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This article was originally published at Personalising The Randall Chronic Pain Scale and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

Please note also the comment from Lois Randall at the end of this page.

0

Pain free

1

Very minor annoyance – mild aches to some parts of the body. No pain medication needed.

2

Minor annoyance – dull aches to some parts of the body. No pain medication needed.

3

Annoying enough to be distracting. Over-the-Counter pain relievers (such as Naproxen Sodium, Acetamonophen, or topical treatments such as Absorbine or Arthritis Pain relieving rubs) take care of it.

4

Can be ignored if you are really involved in your work, but still distracting. Over-the-Counter pain relievers remove pain for 3-4 hours.

5

Can’t be ignored for more than 30 minutes. Over-the-Counter pain relievers help somewhat (bring pain level from 5 to a 3 or 4) with pain for 3-4 hours.

6

Can’t be ignored for any length of time, but you can still go to work and participate in social activities. Stronger painkillers (such as Ultram) relieve pain for 3-4 hours.

7

Makes it difficult to concentrate, interferes with sleep. You can still function with effort. Stronger painkillers (such as Ultram) are only partially effective. (Stronger pain killers bring pain from a 7 to 4-6.)

8

Physical activity severely limited. You can read and converse with effort. Stronger pain killers (such as Ultram) are not effective. (Narcotic pain killers do bring this pain down to a level 3 or lower.)

9

Non functional for all practical purposes. Cannot concentrate. Physical activity halted. Panic sets in.(Narcotic Pain killers bring the pain level from 9 to the 4-6 level.)

10

Totally non-functional. Unable to speak. Crying our or moaning uncontrollably – near delirium.

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This article was originally published at Unknown Pain Scale and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

This scale was developed by Terri Dorothy and was originally posted on the alt.meds.cfs newsgroup.

1

I feel well-rested, even energetic. Life is good.

2

I’m a bit off today. Not too bad, just not a lot of pep.

3

I’m tired. I think I need to get more sleep.

4

I’m really tired. I’m getting desperate for some rest.

5

I’m as exhausted as I’ve ever been when I was well. I feel like I’ve been working really hard, with very little sleep for 3-4 days.

6

It’s a struggle to function at all. I feel like I’m walking through a lead fog. Getting anything done is a sheer act of will.

7

I’m no longer functional. Just getting dressed has exhausted me. I’m either lying in bed or sitting on the couch.

8

Forget getting dressed. Just getting from the bed to the bathroom to the couch is all I can manage.

9

Need help to get from the bed to the bathroom. Forget the couch. I’m too weak to sit up.

10

Can’t get out of bed without help. I’m terrified that I won’t have the strength to take my next breath.

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This article was originally published at Terri Dorothy’s Fatigue Scale and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

1. Hmm, this feels funny. Huh. Oh well.
2. Hmm, this kinda hurts a bit. Oh well.
3. Hmm, this is kinda hurts. Ow. Oh well.
4. Ow. Time for a regular strength Tylenol. Gone.
5. Um, ok… this hurts. Not comfortable. Got any Advil? I’ve got stuff to do.
6. The hell?! Seriously not comfortable. Who invented this pain thing? Coupla Advils, and keep going. Not about to forget about it though.
7. HELLO?! Can we stop with the pain now? Got any Vicodin? I need to lie down. Like RFN! We can talk there.
8. Oh dear God. Whimpering commences. Work stops. Thinking gets muddled. Percocet anyone? Go away, or be prepared to do exactly what I say, when I say it.
9. Afraid this might kill me! Incoherent babbling begins.
10. Afraid this might not kill me! Afraid of having to live through it! Writhing, crying, almost coherent swearing. Morphine drip, anyone?

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This article was originally published at Shanon West Pain Definitions and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

This is the ability scale from the book ‘Somebody Help ME’ by Jill Moss. It has been specially adapted for young people from the ‘Disability Scale’ sent out by the UK M.E. Organizations in 1994. Their scale is somewhat more complicated and written with adults in mind (no mention of schooling etc.).

Something else which Jill notes in her book is that this ladder is an ability scale not a disability scale. So for example, don’t think of yourself as being 70% disabled, think of yourself as being 30% *able*.

100%

No symptoms even following physical or mental exertion. Able to study full time without difficulty, plus enjoy a social life.

95%

No symptoms at rest. Mild symptoms following physical or mental exertion – tire rather easily but fully recovered next day. Able to study full time without difficulty but it means a slight restriction on social life.

90%

No symptoms at rest. Mild symptoms following physical or mental exertion – tire easily. Study full time with some difficulty. Social life rather restricted.

80%

Mild symptoms at rest, worsened by physical or mental exertion. Full time study at school or college difficult, especially if it is crowded, noisy environment. Home tuition or part-time study without difficulty.

70%

Mild symptoms at rest, worsened by physical or mental exertion. Daily activity limited. Part time study at school/college tiring, restricted social life. With home study and careful pacing of activities, some social life is possible. Careful exercise may be possible: walking swimming/cycling.

60%

Mild to moderate symptoms at rest. Increasing symptoms following physical or mental exertion. Daily activity very limited, although gentle walking/swimming/cycling is possible. Unable to study with others. Short (1 or 2 hours) daily home study is possible. Quiet, non-active social life possible.

50%

Moderate symptoms at rest, Increasing symptoms following physical or mental exertion. Regular rest periods needed. Simple short home study possible when alternated with quiet, non-active social life. Not confined to the house but unable to walk much further than 200 yards. Enjoy a trip to the shops in a wheelchair.

40%

Moderate symptoms at rest. Moderate to severe symptoms following physical or mental exertion. Not confined to the house but unable to walk much more than 100 yards. Can manage a wheelchair outing to the shops on a quiet day. Requires three to four regular rest periods during the day. Only one large activity possible per day – friend dropping by or doctors visit or short home study, etc. Rest of the time spent pottering around.

30%

Moderate to severe symptoms at rest with possible weakness in hands and arms. Severe symptoms following any physical or mental exertion. Usually confined to the house but enjoy a quiet wheelchair ride or a gentle walk in the fresh air. Most of the day resting, although some small tasks possible (e.g. letter writing). Mental concentration poor and home study very difficult indeed.

20%

Fairly severe symptoms at rest. Weakness in hands, arms or legs may be restricting movement. Unable to leave house except rarely. Confined to bed/settee most of the day but able to sit in chair for short periods. Unable to concentrate for more than one hour a day.

10%

Severe symptoms at rest. In bed the majority of the time. No travel outside the house. Concentration very difficult indeed.

0%

Severe symptoms on a continuous basis. In bed constantly. Unable to sit up. Unable to care for yourself.

The book details are:

‘Somebody Help ME’
Copyright © Jill I Moss B.A. M.Ed, 1995
ISBN 0-9525-783-01
First published by Sunbow Books

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100

Normal, no complaints, no evidence of disease.
Able to carry on normal activity and to work. No special care is needed.

90

Able to carry on normal activity, minor signs or symptoms of disease.

80

Normal activity with effort, some signs or symptoms of disease.

70

Care for self. Unable to carry on normal activity or to do active work.
Unable to work. Able to live at home, care for most personal needs. A varying degree of assistance is needed.

60

Requires occasional assistance, but is able to care for most of his (one’s) needs.

50

Disease may be progressing rapidly. Requires considerable assistance and frequent medical care.

40

Disabled, requires special care and assistance.
Unable to care for self. Requires equivalent of institutional or hospital care.

30

Severely disabled, hospitalization is indicated although death not imminent.

20

Hospitalization necessary, very sick, active supportive treatment necessary.

10

Moribund, fatal processes progressing rapidly.

0

Dead.

This test was originally published here:

Karnofsky, DA & Burchenal, JH. The Clinical Evaluation of Chemotherapeutic Agents In Cancer. pg. 196. In: MacLeod CM (Ed.). Evaluation of Chemotherapeutic Agents. Columbia Univ. Press, 1949.

No permission is necessary to use or reproduce the scale.

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This article was originally published at Karnofsky Rating Scale and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

Copyright in the following excerpts remains with David S Bell, MD.

The attempt is to document as accurately as possible the severity of symptoms, the degree of activity impairment with both activity and rest, and the functional ability regarding full-time work … This disability rating scale has been developed in our office and any physician wishing to use it may feel free to do so.

100

No symptoms at rest. No symptoms with exercise; normal overall activity level; able to work full-time without difficulty.

90

No symptoms at rest; mild symptoms with activity; normal overall activity level; able to work full-time without difficulty.

80

Mild symptoms at rest, symptoms worsened by exertion; minimal activity restriction noted 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 full-time with difficulty.

60

Mild to moderate symptoms at rest; daily activity limitation clearly noted. Overall functioning 70%-90%. Unable to work full-time in jobs requiring physical labor, but able to work full-time in light activities if hours 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 desk work 4-5 hours a day, but requires rest periods.

40

Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity; overall activity level reduced to 50%-70% of expected. Not confined to house. Unable to perform strenuous duties; able to perform light duty or desk work 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 desk work 2-3 hours a day, but requires rest periods.

20

Moderate to severe symptoms at rest. Severe symptoms with any exercise; overall activity level reduced to 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; bedridden the majority of the time. No travel outside of the house. Marked cognitive symptoms preventing concentration.

0

Severe symptoms on a continuous basis; bedridden constantly; unable to care for self.

Details of the book:

‘The Doctor’s Guide to Chronic Fatigue Syndrome’
by David S Bell.
Addison-Wesley Publishing Company, Reading, Mass.
Copyright © 1994, 1995.

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