Ideally, I think an ME/CFS scale needs to have at least 3 factors: OI threshold, PEM threshold, and cognitive function. Trying to blend two or three of those criteria into a single level just doesn't work when different patients tend to have differing magnitudes of problems in each area. I also wouldn't hesitate to use a half point (such as 3.5) when condition varies pretty consistently between a 3 and a 4.
For example, I equate being bedridden largely with OI issues, whereas hours of physical activity are more a matter of PEM. And there's a huge cognitive component to being able to work. Hence I'm more like a 1.5 on the OI scale, a 3 on the PEM scale, and a 5 on a cognitive scale.
And for practical purposes, such as communicating level of disability, it's generally going to be the lowest of the three values which is most pertinent. Having a cognitive function of 8 doesn't mean you can work 8 hours per day if you can't sit up.
Good points. My cognitive and OI wasnt too bad but my PEM use to be quite severe. At one stage with work i was working 2 x 10hr shifts a week, i didnt have a choice of working shorter shifts and even with 2 shifts a week i was still having regular sick days. What i found was that when i wasnt at work i was mostly lying in bed(not sleeping, insomnia is a bitch), so after 5 days off i would have recovered enough to function for work and then the cycle would begin again. I think i was really in a constant state of pem, because when i would take a couple of weeks off for annual leave i would actually start to feel better by the end of the leave. I still think that those of us still managing to work, that PEM can be accumulative and fatigue builds until we can take a long enough break to recover back to our normal crappy selves??
So it was really hard to rate my function. It was sort of like eating my entire weeks food in 2 days and then not eating for 5 days, or using my entire weeks energy in 2 days and running on empty for 5 days. I think if i was able to rest properly then i would have been able to improve quicker, with the right treatments. But i some how managed to improve to where im working 3-4 days a week and not suffering on days off too much.
Some rate themselves in comparison to where they were pre cfs/me, if i did that i would still be less then 50% in function but actual suffering as in pain, headaches, brain fog etc are probably bigger improvements then my actual level of function, if that makes sense?
So a simple rating out of 10 just doesnt take everything into consideration as well as the ups and downs that occurr regularly. After the initial infections that started cfs off for me, the early stages i could function at a reasonably high level where i would exercise and work full time and then be almost bedridden for 2 weeks. Its hard to try and average all this out into a number out of 10.
For me i think i find it easier to look back at where i was say 6 months ago and then maybe a couple of years ago, it sort of helps even out the bumps to help us gauge where we are at now. I have a pre cfs period i can remember, a pre antiviral period and now my post antiviral period that i can make comparisons to. After dribbling all of this, i think all we can really do is compare us to our own self. i think one person saying they are at a 3 out of 10 can be very different to another being a 3 out of 10??
