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Anyone else think EDSS is a weird scale?

I was just checking my disability on the EDSS (I know - sad activity for a Saturday night). It struck me that this is a very strange scale. Steps 1 to 5.5 mention how disability caused by MS affects daily life. Steps 6 and 6.5 and 7.5 only talk about walking - any other impairments are not mentioned at all. Steps 7 and 8 and above go back to talking about other impairments as well as inability to walk.

I have realised that if I practise every day, I will be able to walk 100m, using one stick and having several rests. So at least until my next relapse, I can be at 6 on the EDSS…

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I used to think about the EDSS in the same way.

I think that the best way to look at it is as a descriptive tool, rather than a scale in the statistical sense.It almost meets the requirements for an interval scale, but it has an absolute zero. But, it has an absolute zero at each end. That makes it unusable for statistical analysis - hence “descriptive”. It does appear to have 5% steps, but if you take (say) EDSS 2.0 and 2.5, the difference is that of 1 or 2 Functional Systems being affected - now prove that the functional systems as defined by Kurtzke are all of equal importance.

My original objection was for EDSS10 (Dead from MS). We all know that MS is not actually a killer disease - WRONG.
If the MS starts to affect an individual’s brainstem, it can affect the autonomic nervous system, so maybe the heart stops pumping, or the lungs stop breathing, or the temperature regulation shuts off - and it was MS that was the killer for sure, only you cannot prove it.

The big problem with the EDSS is that some of the “Authorities” have latched onto it (without any real understanding) and it is used to decide on things that it was never intended for - like deciding whether someone is now SPMS and their supply of a DMD can now be cut off.

The same thing happens with other scales - the 25 Foot Timed Walk measures just that. However it can be used by the old PCTs (so probably the new CCGs) to decide if someone with a FES should still be funded.My CCG did introduce a new type of assessment form, and I will find out next week if they are still using it.

So, think about the EDSS as something that the clinicians have to use because the beancounters think that they understand it. And, actually, walking ability starts at EDSS 3.0.

Geoff

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I wasn’t saying where the walking part started - just that for three points on the scale, nothing matters apart from walking. But for all the the other points, other things matter as well.

I rather liked EDSS 10 - death due to MS, it made me smile (because, isn’t the scale somewhat irrelevant, once you’re dead?). As for the idea that MS doesn’t kill anyone, you only have to look at EDSS 9.5 - “Confined to bed and totally dependent. Unable to communicate effectively or eat/swallow” to know that some people are going to reach EDSS 10. Not many of us, hopefully.

Hope I’m not going to get into trouble for being a misery on the forum (I have before).

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hiya sc

yes! if i recall right its all about physical stuff and no mention of mental.

when did look a few years ago i was a 7 havent looked since

ellie

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Last time I looked at it, I was an 8! Best thing is not to dwell on it too much hun!

Pollx

I have never looked at this scale. Is it something we should be taking notice of?

For some treatments, you have to be below a particular point on the scale. Otherwise it doesn’t matter.

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The Professor of Neurology at Barts obviously agrees with you.

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I hate the thing as I see myself creeping up on it I always look at the next point on it as an idea of what is coming and it scares me as it’s been so accurate (and fast). I’m at 8 right now and really don’t want to move any further on the scale.