Where does the designation of Mild, Moderate, Severe and Very Severe come from?

[November Girl]

What little I remember of the definitions are

Mild - able to perform at 50% of expected level
Moderate - mostly housebound
Severe - always housebound, sometimes bedbound
Very Severe - always bedbound


I've noticed that it is different than Dr. Bell's scale. He puts the 50% level a lot lower on the severity scale. His scale at level 3 states

" Moderate to severe symptoms at rest. Severe symptoms with any exercise; overall activity level reduced to 50% of expected. Usually confined to house. Unable to perform any strenuous tasks. Able to perform desk work 23 hours per day, but requires rest periods."​

This doesn't quite match my experience. My activity level was reduced to a lot less than 50% before I was usually confined to the house. Though I think that a lot of that getting out was stubborness & stupidity on my part. It certainly led to plenty of crashes.

I won't go into the rest of Dr. Bell's scale, except to note that I was working a desk job full-time when my activity level was a lot lower than the 70 - 90% shown in his level 6. I have to say that the quality of my work the last year was not very good, and management was not very happy with me. Prior to that, I had bad times and good times and managed to accomplish enough in a year to do a good job. Come to think of it, on a few occasions people wondered why I did (or didn't) do something as I usually did. Sometimes the CFS addled brain works a lot worse than other times. The sad thing is that I didn't necessarily realize that the project I was trying to do wasn't any more difficult than others had been. The difficulty level skyrockets when my brain is mostly zoned out! That last year I felt like management was piling on the work, and didn't understand how they expected me to do so much.

Gee, I meant for this to be a simple question, not a long post!

 

[justy]

To my mind 50% is still moderately affected - i wouldnt have thought you would fit into mild until you where at about 60 - 70% of normal - some people who are mildly affected can work full time - i agree though that where we THINK we are on the scale is not necessarily where we actually are. I thought i was at about 50% of normal levels when i had testing doen with Dr Myhill - she uses the Bell ability scale and put me at 30% - at times 25% whihc put me in the severe/moderate category. I started to pace as if i where that ill and soon began to see how very ill i really was - hauling myself around was making me iller and iller and it wasnt long before i was partially bedbound.

For me, the confusion comes in more now that i am beginning to recover - i dont seem to fit any particular level - sometimes i'm at 50% - soemtimes even 60 - at other times if i think i am at 60 for too long i will crash back down to 30-40 for a week or more

sorry i dont think i adressed your question did i? im not completely sure what your question is though.
All the best, Justy.

 

[taniaaust1]

No idea where the one you said come from.

The Bell scale I dont like.. as you cant put me anywhere on it properly with the things said in his descriptions... I end up fitting things in three different catagories while other things said in them.. may not fit whatever one someone is trying to put me into.

eg I usually have no symptoms at all at rest (unless Ive gone and done something stupid and gone over what I know my limits are... Im thou usually quite good at staying within my limits).

well I do always have some memory issues and the IBS but I dont really count those. Maybe some would thou still count them and say mild symptoms at rest due to memory not so great and IBS. So with the at rest part..that would put me into the 60% catagory or 90% catagory if Im not going to count just some memory issues and the permanent IBS.

My over all activity level thou is less then 50% .. I hardly do a thing at all most days.. I only have 2 days a week which are like activity days and in those days I are taken shopping and to the library or doctors appointment and then straight back home. Those are the days I dress and shower.. but dont do any housework at all due to having to do the shopping.

Except those days, I dont usually dress, I dont usually shower, I hardly ever have 3 meals per day. If I try to lead a normal life in any way with all the normal basic life things, my condition starts going downhill as Im doing too much. It goes downhill if I go out anywhere more then twice a week... sometimes going out twice a week can be too much and start bringing symptoms in.

I fit the 40% group as far as I may be able to do 3-4 hrs deskwork maybe (basing this on my ability to be on the computer, thou Im not often thinking a lot, I dont last that long if Im having to work my brain). But that has an activity level of 50-70% which Im no where even close to.. I can only be on my feet 1-1.5 hrs per day ..anymore then that I start going downhill.. and I cant aerobically exercise at all. (when Im well before the ME, I was very active). My functioning level is way lower then 40% (based on when I was well)

30% is usually confined to the house and unable to perform strenous tasks... I do fit that.. but are on higher levels with the other things. But I are still unable to completely care for myself to the point I cant even go out alone due to how fast and bad my symptoms can come in.

I really dont fit on that Bell scale, I think the POTS may be the thing which is really holding me back on being higher on the scale
http://www.cfids.org/community/pcpep/disability.pdf

I used to be a 0 on the Bell scale.. I did fit it then.

Mild - able to perform at 50% of expected level
Moderate - mostly housebound
Severe - always housebound, sometimes bedbound
Very Severe - always bedbound

I like that simplified scale... I can say on that Im moderate.