@Dr.Patient I see. So these categorizes are activity based and not symptom based.
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@Dr.Patient I see. So these categorizes are activity based and not symptom based.
Not sure you really can.How do you fully separate symptoms from activity level?
But the symptoms and activity levels are intertwined
I don't have many symptoms anymore when I am at rest..
The symptom severety dictates the activity.
the doctors and disability people want to see what you are able to do on a consistent basis.
Neither do I but activity will produce symptoms. For me pain is a warning sighn to stop and rest. If I don;t I will pay.
The ICC definition of ME uses these severity levels.
Mild: an approximate 50% reduction in pre-illness activity level
Moderate: mostly housebound
Severe: mostly bedridden
Very Severe: totally bedridden and need help with basic functions.
http://onlinelibrary.wiley.com/enhanced/doi/10.1111/j.1365-2796.2011.02428.x/
That is interesting and by this definition, I am moderate but there are some very basic functions that I require help with so not sure where this places me?
I agree on the inaccuracy of these reduction levels. That is why I propose "mild" (can work full time, personal and social activities reduced) "moderate" (can work part time only) "severe" ( cannot work at all, but can leave home several times a week) and "profound" (home or bed bound).
At this point in time, this classification should be essentially a disability based one.
I don't experience pain, my warning sign is feeling irritable and needing to lie down immediately. I think this explains it well:
" In phase #3, the M.E. patient is always prone to unusual and persisting muscle and CNS fatigability after relatively normal physical or intellectual exertion. The patients are not chronically fatigued. When unstressed physically, intellectually or emotionally, the M.E. patient appears totally normal and often has no difficulty doing very short-term tasks. The problem is above all, one of endurance and once exhausted, the increasingly lengthy time to recover to a reasonable degree of activity"
I don't have many symptoms anymore when I am at rest. I get viral symptoms, severe dizziness etc that can last a few minutes to a few months at times, but overall I'm not that "sick" anymore.
My inability to produce energy is what keeps me disabled.
Neither do I but activity will produce symptoms. For me pain is a warning sighn to stop and rest. If I don;t I will pay.
@taniaaust1 it's Dr. Byron Hyde's quote.
@Mij Thanks , have you got the link for that page. I'd really like to read the whole thing