Kelly McLellan seeks feedback on his draft Edinburgh ME Scale

I need to describe 99% for @Bill. Can anyone help with that?

I really have no idea. Would it have to start with the same energy output as 100%? My initial thinking was that this degree of output is recovery. However, if someone with ME can keep up with healthy people then what are their deficits and issues? What makes these issues ME and not something else?

I would assume that people would come into ME at a lower percentage. I don't want to insert 99% into the scale just to accommodate Bill if it detracts from the rest of the scale and makes people without ME think, "I have that!".

99% 70-28-14-0
That is 70 hours of work per week (10 per day), 28 hours of moderate activity per week (4 per day) and 14 hours of light activity (2 hours per day). This is the ending point for ME. A person with ME who is 99% can keep up with their day job, whatever it is, but...
 
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kmclellan said:
I need to describe 99% for @Bill. Can anyone help with that?

I really have no idea. Would it have to start with the same energy output as 100%? My initial thinking was that this degree of output is recovery. However, if someone with ME can keep up with healthy people then what are their deficits and issues? What makes these issues ME and not something else?

I would assume that people would come into ME at a lower percentage. I don't want to insert 99% into the scale just to accommodate Bill if it detracts from the rest of the scale and makes people without ME think, "I have that!".

99% 70-28-14-0
That is 70 hours of work per week (10 per day), 28 hours of moderate activity per week (4 per day) and 14 hours of light activity (2 hours per day). This is the ending point for ME. A person with ME who is 99% can keep up with their day job, whatever it is, but...
Click to expand...
Is the 99% about ongoing susceptibility setbacks to if exceeding limits so that the limits may allow near normal activity levels but exceeding them has an abnormal impact. Ie PEM extended recovery from routine viral infections etc. I’m thinking back to when I didn’t know I had ME as I lived for at least 7 years undiagnosed. At the start I felt I was living a normal life but if I got a virus I was always having to take time off when others may have worked through.
 
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I have added:

"Basic premise of the scale
ME limits energy output and the ability to recover from energy expenditure."

I am wondering if the key to ME severity at the top end of the scale is recovery. Does our inability to recover stay constant? Does it get worse at the same rate as our energy output limit? It seems to vary from person to person. Which is actually worse in ME - our restriction in energy output or our restriction in recovery? Is out energy output limit simply a result of a poor recovery rate?
So I am now wondering how best to reflect our ability to recover. I could have a go at creating a separate recovery scale I suppose but I have not really thought about it before - especially in a quantifiable way.

Here's an initial thought:

Normal Person: normal recovery rate
Mild recovery impairment: increased length of time to recover from highly demanding physical or mental activity
Moderate recovery impairment: increased length of time to recover from moderately demanding physical or mental activity
Severe recovery impairment: increased length of time to recover from low energy physical or mental activity
Extreme recovery impairment: does not recovery from low energy physical or mental activity
 
A general question based on comments, how is "push-crash" a better phrase than "boom-bust"? The later is an everyday phrase, the former seems specific to ME. When the target audience is the general public, would not boom-bust be better?
 
Boom and bust to me means markedly higher performance than normal, followed my markedly lower performance than normal. That doesn't describe what happens. The illness with boom and bust pattern is bipolar disorder. Push and crash to me means struggle followed by collapse, which is a better description. About as good as it gets in such few words.
 
I found this scale useful.

I went to say more useful detail but ... not this week. I wanted to post something as I appreciete the effort gone into making it.

My experience using this scale (averaging):
Pre-illness 120-130%
Onset (not including acute times) 50% 5yrs ago
Last year or so 12.5% (with weeks of crashes at 3%)

Have not experienced 6% personally.

New normal is 25% but i had a full month of 50% earlier this year and thought I was cured/out of the woods (and not looking a gift horse in the..). Oddly, reading this scale a week or so ago helped me realise that I am not.

[personal: As I am always bashing against the ‘wanting to do more’ doors, I find that aggresive rest (and constantly reassessing whether the level of rest is sufficiently blank/empty to be effective - reading is not rest, nor is thinking) is the only thing that consistently helps. The limits change (and even the nature of exertion changes - very very gingerly exercising a skill can sometimes make it easier to fit in the envelope...and sometimes it just uses up spoons) but the need to stay within them does not.

I may need to cut and post most of this on the personal sections.]
 
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