Clarity re activity levels for profile?

[SOC]

I got to thinking about severity/functionality evaluation while reading the thread about Newton's recent paper Variability of POTS in PWME and PWOI. They used a scale which looks pretty reasonable to me except that a large chunk doesn't apply to PWME if you use the 50% reduction in activity level as a requirement for an ME/CFS diagnosis. That requirement eliminates anyone at levels PS 0 - about PS 4 from an ME/CFS diagnosis.

Since I don't buy the 50% reduction thing -- I think you can have mild ME if you have PEM but less reduction in overall activity level -- I'd define severity levels using this scale as follows:
Mild: PS 2-3
Moderate: PS 4-6
Severe: PS 7-9

PS 0 The patient can perform the usual activities of daily living and social activities without malaise.
PS 1 The patient often feels fatigue.
PS 2 The patient often needs to rest because of general malaise or fatigue.
PS 3 The patient cannot work or perform usual activities for a few days in a month.
PS 4 The patient cannot work or perform usual activities for a few days in a week.
PS 5 The patient cannot work or perform usual activities but can perform light work.
PS 6 The patient needs daily rest but can perform light work on a “good day”.
PS 7 The patient can take care of himself/herself but cannot perform usual duties.
PS 8 The patient needs help to take care of himself/ herself.
PS 9 The patient needs to rest the whole day and cannot take care of himself/herself without help.

What do the rest of you think? How would you define severity/functionality by this scale? What other functionality scales have you seen that you think are representative of our experience with this illness?

ETA: @MeSci pointed out an earlier thread on this topic here which I managed to miss when looking for a topical thread. Used the wrong search words, I guess. Let's continue this discussion there. I'll ask the mods to merge this thread.

 

[worldbackwards]

I think it's a good idea (I find the ordinary scales baffling), but how do you define "light work"?

Does "rest" mean bed rest? Or sitting quietly? Or just having to do something passive?

Where do severe limitations on the time you can spend doing something come into it, if that thing is pretty minor? If activities have to be rotated frequently, you could be doing quite a lot and yet be nowhere near a position where you could work.

What about housebound? Would car travel come into it? Or being able to get around shops, etc? Need a chair? Useless with or without?

The problem with these things is that they don't lend themselves to detail, but they are invariably incomprehensible without it. But this is a better effort than others I've seen.

I'm about 7-8 I think, which seems about right. So maybe it doesn't matter.

 

[MeSci]

I got to thinking about severity/functionality evaluation while reading the thread about Newton's recent paper Variability of POTS in PWME and PWOI. They used a scale which looks pretty reasonable to me except that a large chunk doesn't apply to PWME if you use the 50% reduction in activity level as a requirement for an ME/CFS diagnosis. That requirement eliminates anyone at levels PS 0 - about PS 4 from an ME/CFS diagnosis.

Since I don't buy the 50% reduction thing -- I think you can have mild ME if you have PEM but less reduction in overall activity level -- I'd define severity levels using this scale as follows:
Mild: PS 2-3
Moderate: PS 4-6
Severe: PS 7-9



What do the rest of you think? How would you define severity/functionality by this scale? What other functionality scales have you seen that you think are representative of our experience with this illness?

There's another discussion on activity levels here. I struggled to categorise myself too, but think that I've got it about right.

 

[SOC]

I think it's a good idea (I find the ordinary scales baffling), but how do you define "light work"?

Does "rest" mean bed rest? Or sitting quietly? Or just having to do something passive?

Where do severe limitations on the time you can spend doing something come into it, if that thing is pretty minor? If activities have to be rotated frequently, you could be doing quite a lot and yet be nowhere near a position where you could work.

What about housebound? Would car travel come into it? Or being able to get around shops, etc? Need a chair? Useless with or without?

The problem with these things is that they don't lend themselves to detail, but they are invariably incomprehensible without it. But this is a better effort than others I've seen.

I'm about 7-8 I think, which seems about right. So maybe it doesn't matter.

Agreed. No simplified scale can capture our experience. There are too many parameters and variations in word meanings. Add to that the fact that the people writing these scales are healthy and so what "usual activities" and "rest" means to them may have an entirely different meaning to us and they don't recognize that at all.

I think the best we can do is see these things as functionality scales. They don't capture our symptoms or our experience. They can just indicate what we can (or more accurately, cannot) do for whatever reason.

We also need to remember that the scale creator is probably referring to healthy people with phrases like "usual activities" so that means working full-time AND doing all the home maintenance (painting, heavy yard work, moving furniture, lugging boxes), AND social activities, not just the bare minimum housework that is all most of us can do.

I think that we also need to consider baseline functionality rather than the best or worse we can do over the course of a month. Some of us tend to be overly optimistic, while others tend to be overly pessimistic when evaluating our own functionality.

I'd love to see @ljason publish a paper with a simple functionality scale with supporting information -- details of how to apply it -- so that ME clinics and researchers could train someone to properly evaluate patient functionality based on a patient's description of what they can do on a daily basis. While it wouldn't help much in a GPs office because no simple scale can capture ME, it would allow ME clinicians and researchers to better assess the progress of patients as the result of treatments.

 

[ahmo]

I find myself surprised, if not perplexed, to see that I'm a 6-7, which is mod to severe. I guess it's true. I guess I have a certain level of dissociation about my condition. I can go out for errands once a week, twice if necessary. But the truth is, I don't do much more than that and whatever task is essential on any day. And the reason I feel so well is that I've eliminated virtually all my symptoms, aside from lack of cognitive and physical energy.

Agreed. No simplified scale can capture our experience. There are too many parameters and variations in word meanings. Add to that the fact that the people writing these scales are healthy and so what "usual activities" and "rest" means to them may have an entirely different meaning to us and they don't recognize that at all.

 

[alkt]

Do you mean the stuff which appears on your 'personal details' page in your profile under the 'activity level' box? That's all I have been able to find.

I am active all day if activity means being out of bed and doing things! So is food preparation activity? Is feeding the cats activity? Is doing research sitting down activity? Is forcing my unwilling brain to do my accounts activity? (It certainly is exertion, but not physical.) Is talking on the phone activity? (Again, I find this strenuous.)

yes all of the above are activities that expend energy just sitting up requires the use of energy likewise thinking . put your hands up if you find it hard to stop thinking even when your resting. i quite like the spoons example i came across on a you tube living with m.e post.

 

[SOC]

I am active all day if activity means being out of bed and doing things! So is food preparation activity? Is feeding the cats activity? Is doing research sitting down activity? Is forcing my unwilling brain to do my accounts activity? (It certainly is exertion, but not physical.) Is talking on the phone activity? (Again, I find this strenuous.)

Wow, yes, I'd consider that active all day. I had years when I couldn't be off the bed or recliner more than an hour or two a day. I'm active all (or most of) the day now although about 3/4 of the time I need to take a 1-2 hr nap in the evening. I'm certainly not on my feet or sitting in an upright chair all day, though.

 

[Tammy]

As others have mentioned............the word "Activity" needs to be clarified more in detail.

 

[Sushi]

Also the physical position you are in for the activity. Most of us can do much more while sitting with elevated legs than while standing. Most of us have trouble with "arm activity" if the arms are raised over the heart. And then there is lying down, which somewhat limits activity, but if you can lie or recline and use the computer it it easier for most than sitting with your legs down.

 

[SOC]

I find myself surprised, if not perplexed, to see that I'm a 6-7, which is mod to severe. I guess it's true. I guess I have a certain level of dissociation about my condition.

I suspect many of us do. We get used to our own baseline so it becomes a type of normal to us. That and if we constantly compared our normal to healthy normal, we'd be unable to cope emotionally with life. I get to thinking I'm doing pretty well... and then I look at what healthy people my age are doing.... I prefer to feel pretty good about being so much better than I was 2 years ago.

 

[ahmo]

I prefer to feel pretty good about being so much better than I was 2 years ago.

 

[alex3619]

They used a scale which looks pretty reasonable to me except that a large chunk doesn't apply to PWME if you use the 50% reduction in activity level as a requirement for an ME/CFS diagnosis.

This is an important point.

These kinds of scales do not fit me. For example, at the moment I am capable of doing maybe 20 hours of activity per day. Provided you mean something sitting down. Provided its not demanding. Provided I do not do one activity for too long. Provided I don't crash. Provided I can cope with only four hours sleep (two blocks of two hours, not a single block). Provided no physical activity goes for more than twenty minutes. Provided that any physical activity is very very very light - heavier activity might have a duration of only seconds. Provided I can pace most light activities into two minute blocks. Provided you do not mean getting my mail ... but even if you allow that I only get out once a week (I have to walk to my letterbox). Provided no mental activity raises my adrenaline. Provided I don't do any one mental activity for more than three hours, down to zero at some times. Provided I don't have to pay attention to too many details. Provided I do not have to deal with numbers for more than seconds. Provided I can concentrate enough to read several sentences or watch a movie. Provided whatever it is does not require a working memory.

Etcetera.

Perhaps a scale that emphasized that failing ONE activity in a list meant you are at that level in the scale?

 

[MeSci]

I suspect many of us do. We get used to our own baseline so it becomes a type of normal to us. That and if we constantly compared our normal to healthy normal, we'd be unable to cope emotionally with life. I get to thinking I'm doing pretty well... and then I look at what healthy people my age are doing.... I prefer to feel pretty good about being so much better than I was 2 years ago.

You've made me feel good by saying that my description of my activities says that I am active all day!

 

[MeSci]

This is an important point.

These kinds of scales do not fit me. For example, at the moment I am capable of doing maybe 20 hours of activity per day. Provided you mean something sitting down. Provided its not demanding. Provided I do not do one activity for too long. Provided I don't crash. Provided I can cope with only four hours sleep (two blocks of two hours, not a single block). Provided no physical activity goes for more than twenty minutes. Provided that any physical activity is very very very light - heavier activity might have a duration of only seconds. Provided I can pace most light activities into two minute blocks. Provided you do not mean getting my mail ... but even if you allow that I only get out once a week (I have to walk to my letterbox). Provided no mental activity raises my adrenaline. Provided I don't do any one mental activity for more than three hours, down to zero at some times. Provided I don't have to pay attention to too many details. Provided I do not have to deal with numbers for more than seconds. Provided I can concentrate enough to read several sentences or watch a movie. Provided whatever it is does not require a working memory.

Etcetera.

Perhaps a scale that emphasized that failing ONE activity in a list meant you are at that level in the scale?

I wonder whether a measure of calories burned might equate very roughly to 'activity'?