Often you’ll hear CFS/ME sufferers talk about what per cent they are. “I’m about 40% at the moment”. For those not in the know this is a reference to CFS Ability Scales.
There’s a few versions of this floating around. Generally speaking it’s accepted they’re about the same. AYME’s scale is tweaked for young people. Here’s three online versions I found:
http://foggyfriends.org/abilityscale.htm (taken from AYME)
For many it seems a useful tool to measure progress/relapses and to give better definition to ones condition with an illness that has such a range of ability and debility.
However, I really struggle with these scales.
I find it so hard to pinpoint where I am. For quite some time last year I had myself down at somewhere between 70-90%. I was firmly intent on going back to work at that time and expecting a linear (albeit slow) recovery to normality. But I could never quite fit the scale here.
Now I realise it was because in reality I was much lower on the scale and in denial (and some ignorance thanks to the GP’s I saw) about how ill I really was.
But I still struggle to fit myself on the ability scale.
Dr Charles Shepherd suggests in his book “Living with ME” that most sufferers eventually settle at a point on the scale and then for a long time fluctuate between one point above (at their very best) and one point below (on their bad days). He also says that trying to push past that upper point is unwise, there is a natural ceiling and psuhing past it end is relapse and worsening of the condition. He says that usually people break free from this invisible ceiling eventually but quite how is unknown. It just kind of happens.
This has helped me.
Now I know I can be sliding around in a plus or minus 15% window it helps me frame it better. I don’t need to know I am at 40% or 30% or 20% exactly. I just know that realistically I’m down the bottom end of the scale but not quite at the very bottom.
What strikes me about these ability scales is that it doesn’t take into account how much a person does, or more accurately how much a person HAS to do.
I don’t know if this makes sense but as a for instance, Jane Smith can be floating about at 40% because her husband does all the chores in their house and also is around a lot to fetch and carry for her. However, Jo Bloggs is also 40% but has little or no support, has to cook, clean, care for childen and run errands. If she had Jane’s kind of support she would average 60% or 70%.
In the end they feel as bad as each other – but it’s skewed because Jane feels that bad after doing nothing at all.
I know it’s just a tool … but a lot of CFS sufferers are keen to know what per cent you are. I just don’t find it that easy to say. I am how I am. Whilst I would love a way to tell folks how much better or worse I am compared to last week, last month etc the changes I note are in much more ordinary things.
My scale is more like:
- Able to get up by 9am, do a couple of chores and drive to the shops if want to
- Able to get up and go out / have visitors a few days in a row and not feel horrible
- Able to get up by 9am and do a small chore
- Able to get up by 9am and spend the day downstairs
- Able to get up and go out / have visitors once a week but feel tired afterwards
- Able to wash and dress and go downstairs without ruining the rest of the day
- Able to dress and spend most of the day downstairs
- Able to sit around in bed most of the day and spend the evening downstairs
- Only able to lie in bed and feel horrible
Well, it’s more complicated than that and there’s more points on my scale but you get the idea I’m sure.
Out of interest from the three scales I’ve given links to here’s where I think I sit on each at the moment:
AYME: broadly 40-30%, some of 20% fits (but not in terms of mental concentration).
Dr Myhill: 20-30% but it’s not a good fit. Some criteria fits at 20% or less, but the other criteria do not fit. I have one criteria from each of 40, 30 and 20 per cent.
Hummingbird: Somewhere between 50% and 30% (although one of the criteria fots at 20% even though the rest do not).
Say I place myself at an average of 30% here is what each of the scales say (you can compare the difference yourself):
Moderate to severe symptoms at rest. Severe symptoms following any physical or mental activity. Usually confined to the house but may occasionally take a quiet wheelchair ride or very short, gentle walk in the fresh air. Most of the day resting. Very small tasks possible but mental concentration poor and home study difficult.
Dr Myhill 30%
30: 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 deskwork 2-3 hours a day, but requires rest periods.
30% Overall physical activity level reduced to around 10% of expected. Usually confined to the house but may occasionally (and with a significant recovery period) be able to take a short wheelchair ride or walk, or be taken to see a doctor. Most of the day needs to be spent resting except for a period of several hours interspersed throughout the day when small tasks may be completed (or one larger one). Activity is mostly restricted to managing the tasks of daily living and some assistance with or modification of tasks is often required.
Now I know these are just a guide. I understand that different people and organisations tweak the guidelines to try and make them more relevant.
But it’s just one more thing to confuse the hell out of me.
Which is why, on the whole, I don’t use Ability Scales.