I was talking a while ago about the difficulties of judging the severity of your ME. The main problems appeared to be the broad breadth of the three levels (mild, moderate and severe) and the fact that you could be very disabled in some ways (such as cognitively, physically or smyptom wise)and not in others. It was suggested that I made up a different ability scale like the scale used by weather forecasters (just a pity you can't actually forecast you ability level). However whilest surfing ME ability scales on the web I found this which I thought was very good.
1. Because it had 6 categories, mild, moderate, moderate to severe, severe, very severe, and profoundly severe
2. It was split into three parts, physical, cognitive and symptom severity
It can help ME sufferers moniter their progress over time
You can download a paper copy of it from here;
http://www.hfme.org/themeabilityscale.htm
On the physical scale I'm about 40-50%, on the cognitive 50-60 %, and symptom wise 70-80%.
I do like this scale, but , it doesn't say about being totally confined to the house until like 3%, when I think on the ayme scale , apart from the 'usually confined to the house' bit, I was at like 20 % when I was totally house bound
ReplyDeleteand on there I'm like 3-5% when I know I'm not that ill on any other scale, to me that kindof percentage is, no computer, maybe some music/audio tape, no tv etc ?
I mean I'm in bed nearly 24 hours a day, I don't ever get out of bed to do an activity or anything, apart from having a bath rarely, and that kindof thing, but I still think of myself as 15% really, not 3 aha ;) I can't sit up to do an activity but I can be propped up for small periods of time , whereas to me 3% is like, can only just manage 2 pillows etc, don't you think?
I don't knoww rosa, they're all really difficult to define , esp with different opinions
Thanks for your comment :)
ReplyDeleteI liked this one because it splits it into physical, cognitive and symptomatic sections and also because it has six categories- mildly, moderately, moderately to severely, severe, very severe and profoundly severe. Whilest other scales only have three with a much broader breadth so severely affected can mean anything from feeling fairly tired and lying on the sofa all day, but you can still watch loadsa tv, manage some schoolwork, phone friends, etc to someone who is mute and blind in a darkened, silent room
ReplyDeleteI agree you sound more like 15% to me (its one of the things I like about you, we view our severity in the same way :)) but maybe it depends what part of the scale you look at? For instance you might be 3% on physical but 20% on cognitive, or whatever? And then when you add all the stuff together it comes to 15%? I range quite widely from one part to the next
I just found your blog following your post on nausea on ff. That's a good scale, everything seems to differ. 2 doctors have put on letters I have very severe ME and one used the term Profoundly severe (first time I've had that in letters), BUT I can talk, eat, sit up and crawl a little! I class myself as having severe ME but not very what do ever anymore. I used to be really bad but then was labled as faking instead! I don't know what my doctors class as what (to put ne in the very severe category I can only assume they are comparing to those who work and socialise with a bit of a struggle)
ReplyDeleteGood morning Rosa :)
ReplyDeleteProblem I find with scales is that they don't seem to account for the fluctuations very well.
I mean 'we' move in and out of severity don't we? So at any one time my own severity is different potentially to the time before.
Very difficult to present this to a doctor for example, unless one uses a graph I suppose. I have done this in the past believe it or not lol.
And religiously completed diaries of 'progress' that unfortunately, no-one seemed to really ever read.
Now I tend to use the disability scale in the MEA Clinical Issues booklet. 100% is totally bed-bound for example, through to 30% which is where in the past I have been able to work or study at Uni/college.
But again it fluctuates and so working or studying is very difficult to maintain - not even accounting major relapses.
I do hope you are feeling a wee bit better x