The Mild, Moderate, Severe and Very Severe Levels of ME/CFS

medfeb

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@Learner1 - I also like your tracking markers. Do you have a tool that you use to track these? Are there any in the list that are especially useful or useful at different stages of severity?
 

Learner1

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I haven't formalized it, but it would be easy to put them in a spreadsheet.

Yes, there are likely groupings. For example, now that I can sleep through the night, stand in a grocery line, do cognitive tasks, and sit through a meal, I don't track them anymore.

These days, I'm measuring by my ability to work, exercise, do housework, stand, and socialize, all of which I still have significant challenges with, along with the number of hours of treatment or self-care per week and amount of PEM I get, and naps needed.
 

Learner1

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Thanks - good luck with your efforts! I find being able to report these things to my doctors helps me get better care, which helps me make further progress, and helps turn things around if things worsen by making adjustments to my treatment plan.
 

alex3619

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Australia uses a modified Karnofsky scale - https://ahsri.uow.edu.au/content/groups/public/@web/@chsd/@pcoc/documents/doc/uow129188.pdf

In this I was thinking I was at 60 on the modified scale, but then I realised I might meet the criteria for 40, rising to 60 late at night. I am asleep over half of all daytime. When not bedbound I am chairbound for over 95% of the time, moving as little as possible so I have the energy to get food, make tea etc. when I need to.

Usually I just use the ICC, its the simplest.