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The original was posted on /r/cfs by /u/WhitneyDafoe on 2024-04-09 21:02:57.

New Severity Scale for ME/CFS

by Whitney Dafoe

https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2024.1369295/full

I wrote this new severity scale for ME/CFS about 2 years ago.  I really wanted to express how severe the illness can actually get which is not at all reflected in our current mild-moderate-severe-v.severe scale.  And I wanted to make it more accurate to our lives.  It’s not perfect, I know, mostly because every ME/CFS patient is so different.  

It’s not possible to reflect everyone’s situation perfectly or account for all the millions of particular circumstances all ME/CFS patients face in one scale because every category would need a 50 pages long description.  But I tried my best to make it as useful and inclusive as possible.  

It has been changed for publication in a few ways that I don’t like, mostly making the Extremely Severe categories labelled with A, B, C, D etc because it doesn’t mean anything without having to look at the scale and read it.  A more descriptive Extremely Severe category name would be more useful to us I think so you would know what it meant from the words alone or could at least remember what they meant.  But there is always room for improvement and change down the road. 

I really hope I did you all justice and that this may be useful for us if nothing else, for a template for moving forward to make a scale that is even better.  I have already read some great ideas for improvement.  

I love you all.  Whitney ❤️ 

ps. please go easy on me, I really did my best at the time but I'd love to hear your ideas and how this scale works for you and would affect you.