Scales For Measuring the Severity of Illness, Pain, and Disability

These scales attempt to measure overall severity Fibromyalgia/CFS, of pain, or of illness in general for a patient. Remember, these questionnaires are not standardised at all – that means you might score 50% on one test, 70% on another and 4 on yet another! The scales are not connected at all like, say, IQ tests are where it doesn’t matter which IQ test you take, you’ll get the same basic result. These are all different:

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.