Could the scale used on PR be used as a starting place:
0 - Bedridden constantly
1 - Mostly bedridden
2 - leave house once a week, concentrate 1/hour a day
3 - leave house several times/week, two hours work/activity at home a day
4 - 3 to 4 hours of work/activity a day
5 - four to five hours/activity a day
6 - six to seven hours/activity a day
7 - able to work full-time but with difficulty
8 - near-normal activity level but still symptomatic
9 - normal activity level, mild symptoms
10- fully recovered
I don't fit into that scale either.. I'm only able to leave my house once a week (with support person to push wheelchair), independently, I cant go out at all .. but I can concentrate more then a couple of hours on most days (If its something easy to understand and not hard brain work) sometimes even more then that. I can be at my computer for hours.
So once again there is miss match cause two different ME symptoms got put onto one line of a scale and a person can have their walking severely affected by this illness if they have severe OI with it but have their brain a little better.
I can often do six hours of activity a day if its simply online at computer doing "easy things" (and spend the other 18hrs in bed).. but I'm near bedridden or bedridden some times due to the physical aspects of things. (I cant even sit at times.. use computer laying down in bed at times). I can be unable to sit up but still be able to use a computer in bed.
So where do I fit on this scale? are I a 1 (mostly bedridden due to 18hrs often in bed) or do I rate as a 6?
(Ive heard of bedridden patients still actually working online part time using a computer. I myself couldn't actually "work" as I haven't found an easy online job I could do)
....
Here's a big scale kicker with me..
I can be experiencing only "mild symptoms" if Ive done nothing at all and are doing all the preventative things I can do to stop symptoms eg avoid any chemical exposure, only eat all the things I'm okay with, don't do any activity etc
One research study I was in I think was given a hugely inaccurate impression of my ME/CFS as a questionaire asked if my symptoms had been mild that week.. and cause I had stayed mostly in bed (was taking care not to crash which sends me to hospital at times) so in fact my symptoms had been mild that week. When in truth had I done anything, my symptoms are very severe so that question really just gave a false impression on how I am and how much I can do.
Many of my symptoms only first come in when I'm doing things eg my OI stuff comes in if I'm trying to be physical active and I cant over exert physically unless Ive been doing stuff. If I stay in bed, no OI and no post exertional symptoms.
So its possible to ask me to rate how I felt today and if I stayed in bed, slept whenever I needed too and did nothing and didn't have to think and took all the other precautions to avoid symptoms, I could say 9/10. I may of felt no being dazed, no nausea, no dizziness, no headache etc etc all cause I just didn't get out of bed that day and took great care not to trigger my ME off on the previous days too.
How sick I are is very dependant on how much activity I do among other things .