I have been thinking for a month or so about working out a one-page "instrument" (test, measure, questionnaire) that would measure -- that's why the term "instrument" is used -- fatigue /tiredness. I do have experience doing research in developing and validating such instruments, so that they give consistent results.
The Fatigue Instrument (a better name would be nice) would allow a patient to communicate the amount of deterioration in quality of a day's activities due to fatigue. Some of it would would compare the present to the past, and some items would focus on the present only.
It is one of those self-report tests that seem obvious on the face of them, like the Beck Depression Inventory, or the Excessive Daytime Sleepiness Scale.
It would allow us as patients to say "I wake up tired," vs. "I suddenly conk out after dinner and wake up for the Late Show," vs. "Any physical activity tires me out completely," vs. "I get very tired trying to follow a couple of people arguing -- especially if they are trying to set me straight."
And would probably allow for degrees of agreement -- This statement is very like me, not so much like me , completely different from me -- sort of thing.
There are two ways I think it would help us: If I were to fill it out each time I went back to the same doctor, this instrument would track ups and downs in my fatigue level. That would be MY contribution to "evidence-based medicine (perhaps). If the doctor says "but this medicine works for almost everyone, and it should be working for you," and you have the evidence to back up your assertion that it isn't working as advertised, that should be helpful to you or me as a patient.
The Instrument is probably not as reliable as one would wish, for making comparisons between people. That's comparisons as in This person who scored 30, is twice as tired on a daily basis, compared to this other person who scored a 15. Can't do that kind of comparison between people. Can make comparisons between groups -- Dr X's patients don't respond with as much tiredness as Dr. Y's patients do.
Does it seem to be useful to anyone? Do you see problems and negatives with taking this five minute paper and pencil test at the doctor's office? Is it a way to help doctors and patient get on the same wave length about the patient's tiredness?
Thanks for any and all feedback.