When I was first diagnosed and joined AYME (the Association of Young People with M.E.) in the UK, one of the first things I received in my welcome pack was a leaflet about the CFS/M.E. Functional Ability Scale. (In hindsight, it felt so strange receiving a ‘welcome pack’ in this way, even though I was incredibly grateful for it at the time. “Welcome- you’re really, really sick!”)
The Ability Scale gives you a rough indication of how far along the recovery ladder you are and is often used by experts, doctors and patients to monitor progress.
An Ability Scale Example
Should I Use The CFS Functional Ability Scale?
The Advantages of using the Functional Ability Scale
- It can give you reassurance when things are going well and also in the early stages of illness.
- You can cross-reference your symptoms and find out whether or not a new symptom is something common or unusual.
- It can help you track your progress.
- It is a good way of explaining your symptoms/condition to others.
The Disadvantages of using the Functional Ability Scale
(This is going to sounds like I’m completely bashing this system, but I’m really not!)
- The criteria are based on someone else’s idea of what your healing journey should look (i.e. your 40% might be different to someone else’s 40%)
- The symptoms described are quite formulaic and although designed to help, they might only cover some of your symptoms, not all of them. (sometimes, you might be a mixture of two bands, for example).
- The big one- if you have a relapse, you might feel like you’ve failed in some way.
- The scale can encourage striving and pushing yourself too hard which, again, could lead to relapses.
- Too much focus on the scale can cause a certain amount of stress and worry in the body, which might make you feel sicker, in the worst case scenario. Click here and here to understand what I mean.
At the end of the day, if referring to and using the scale works for you, then I think it’s a brilliant tool. But if you find yourself feeling disheartened and like you’re putting too much pressure on yourself, then maybe take a step back. Using the scale as a reference point occasionally is perfectly acceptable as well.
Let me know below, do you use a scale like this? Do you find it useful?
Love, Katie xxx
Interesting to read – and interesting to chart the different times in my life – I have never been scaled like this before, as my chronic fatigue is caused by other conditions. Currently, I would be considered at 60-70% depending on the day, however earlier in the year I would’ve had times at 40-50%.
To me, it doesn’t depress me (ok maybe a little), but rather gives me a scale to which I can turn to myself and say ‘see, you’ve moved up, slowly but surely, keep going’.
Love this Samantha- it can definitely be motivating- xx
The trouble I’ve always had with scales like this is that I struggle to reconcile my ability to work/study with my ability to socialise. On these scales I often find that I’m 20-30% difference between the two… which then used to make me feel as though “oh, well if I can socialise at 80% on the scale I should be able to work at 80%” which has never really been the case for me. At the moment my work ability (in the traditional go out and work 9-5 sense) is restricted to maaaaaybe thinking about trying part time (70%?) but I can socialise fairly well and as long as it weren’t every day, wouldn’t take me 2/3 days to recover (90%). Phrases from about 50% – 95% apply to me! In general, not a huge fan personally, but I know they’re invaluable to many people
I try to only compare to myself these days and how I’m doing compared to how I was doing.
Love this Lizzy- thank you my love! Comparing yourself to within your own limits is essential for a lasting recovery- xx
Scales are very useful for explaining where you’re at to Drs and for benefits applications. I fit some scales better than others; I personally prefer the ME Association one. However, I think they do have their limitations. For me, I don’t fit the boxes when I look at my walking ability compared to my other symptoms. My walking ability is less than it ‘should’ be for my general level of symptoms, especially in summer when I’m feeling a little better.
Thank you Mel. As you mentioned, it’s all about using the scale to inform you of your own health, but the scales can be quite variable- xx
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