Comparison of measures of functional capacity and the way the questions are worded to take into account ME/CFS limitations

Thanks for sharing all this @Trish.

I know lots of people seem to like the FUNCAP, especially as it's now part of the monthly cycle in the Visible app. But, I struggle with it for the sole reason that I choose not to do many things as part of the wider pacing/management of my illness, therefore I struggle to answer many of the questions.

Yes, ok, I could (and sometimes do) say, I can't do or the measured impact 3 days etc., but, it still doesn't sit quite right with me. Especially when it doesn't take into account the fact that many of the tasks being recorded can happen over the course of a day/week/month and are cumulative in their impact.

Maybe I've misunderstood the purpose/approach, but it just highlights to me the difficulty of measuring any of this with such a variable illness.
 
Fainbrog said:
But, I struggle with it for the sole reason that I choose not to do many things as part of the wider pacing/management of my illness, therefore I struggle to answer many of the questions.
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That's interesting and worth saying. I also don't do lots of the things on the list because of pacing, but to me that means I should rate them as having a serious impact.

I do get the bit about cumulative activity. Everything contributes to cumulative effects, so the scoring can only ever be an approximation.
 
Fainbrog said:
Especially when it doesn't take into account the fact that many of the tasks being recorded can happen over the course of a day/week/month and are cumulative in their impact.
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That's an interesting point, actually. The questionnaire seems to acknowledge that pwME might do tasks more slowly than a healthy person, but that doesn't begin to communicate the reality of it.

It often takes me three days to wash the floor of my open plan sitting room/kitchen, but it's never three consecutive days. I live with furniture in the wrong place for well over a week, and when I've been particularly overstretched, I've had my sofa facing the wrong way and the steam mop propped up in a corner for a month. Ideally it'd be done every week, but as my nan used to say, that sort of thing only happens in films.
 
Fainbrog said:
Thanks for sharing all this @Trish.

I know lots of people seem to like the FUNCAP, especially as it's now part of the monthly cycle in the Visible app. But, I struggle with it for the sole reason that I choose not to do many things as part of the wider pacing/management of my illness, therefore I struggle to answer many of the questions.

Yes, ok, I could (and sometimes do) say, I can't do or the measured impact 3 days etc., but, it still doesn't sit quite right with me. Especially when it doesn't take into account the fact that many of the tasks being recorded can happen over the course of a day/week/month and are cumulative in their impact.

Maybe I've misunderstood the purpose/approach, but it just highlights to me the difficulty of measuring any of this with such a variable illness.
Click to expand...
You’re supposed to do it monthly for a year, so you see any variations. You’re reflecting on the month just gone, so you’ll have an idea of how demanding the activity has been recently.
If you break a task down over days so that it doesn’t impact you for 3 days, you just have to reduce your activity for the rest of that day (but for 3 days in a row) then you answer that you have to rest for the rest of the day.
The thing is, FUNCAP don’t want your data or answers, it’s just so you can have a record. They’re not making a “data set” or using the exults in clinical trials, so it’s not perfect but it doesn’t need to be.
 
It's good that the point about cumulative effect is raised, and the question of how we decide between the options in FUNCAP.

My idea on this thread is that we compare
  • which of these most successfully captures the experience of our functional limitations, including the slow recovery and cumulative effect of activities,
  • which will be best for us for tracking changes from month to month to help us with pacing
  • whether any of them provides the sort of information on changes in functional capacity to be used as outcome measures in clinical trials
Maybe I'll set it up as a poll.

SF-36 PF
The following items are about activities you might do during a typical day. Does your health now limit you in these activities? If so, how much?
Scores:
0 = Yes, limited a lot
5 = Yes, limited a little
10 = No, not limited at all
_____________________________

WHODAS 2.0

In the past 30 days, how much difficulty did you have in....

0 = No Difficulty
1 = Mild Difficulty
2 = Moderate Difficulty
3 = Severe Difficulty
4 = Extreme Difficulty or Cannot Do
______________________

FUNCAP

0: I cannot do this.
1: My capacity will be severely reduced for at least three days.
2: I can do little else on the same day and for one to two days afterwards.
3: I can do little else on the same day.
4: I must limit other activities on the same day.
5: This rarely affects other activities.
6: Unproblematic - does not affect other activities.
_______________________

The ME Activity Questionnaire (MEAQ) currently in development, scoring system unknown so I've labelled the options A to E.

Over the last month, have you done this activity on an average day (rather than a good/best day)? (Choose one answer)

A: Yes, I usually do this. It is not a problem.

B: Yes, but with adaptations (eg aids and equipment, help from another person, more slowly than a healthy person, or using methods that involve less effort) AND/OR I limit or alter other activities to achieve it AND/OR I limit how often I do it to enable me to do higher priority activities.

C: No, I avoid doing this so I can do other things.

D: No, I DO NOT/ CAN NOT do this

E: Not applicable. This activity isn’t relevant to me.
____________________________
 
MEAQ is a nightmare from my POV,

option D there is a significant difference between 'do not' & 'can not'.
Option C is wide open to the 'oh, so you could do it if you wanted to, you've just chosen to do something else' interpretation
Option B... well i just dont know what to say, its silly having all those things lumped together when there is such a vast difference between them. And my bigger issue with option B is that it will be interpreted thus 'ah so you can do it then, as long as you dont do other things/have help/use an aid/do it slowly etc etc.

Its all far far too nebulous and open to interpretation (twisting) by the recipient/reader, and extremely confusing for the person attempting to fill it in.

Honestly i think the SF36 is ok. At least 'how limited are you' covers both whether it can be done and whether one is limited by affer effects/needing help etc.

The FUNCAP - yes ok too

I've never done the WHODAS but that looks ok too.

the activities themselves are also a significant part of it though, not just the answer options. As the options may be better suited to some activitites (or at least the questions) than others.
 
Do we really need a “data set” of everything pwME do/can’t do/wont do - at the level of “brushing my teeth” and “made a coffee” I’m not being factious *facetious , I know that Severe and Very Severe pwME would count those as significant.
What I mean is I probably have an energy bandwidth and I can do any number of things within that in all kinds of combinations, sometimes I can push to the edge of the bandwidth and do a lot. But there’s a limit somewhere. And there are many variables, e.g. someone who has children they’re responsible for in the home vs someone who lives alone. Mary can’t manage washing her hair, but Bob can wash the dishes. Ok great but Mary has 3 kids she prioritises and Bob lives with his parents who do all his cooking and cleaning.
I guess what I’m thinking is why are we looking at what general ADLs someone can/can’t do? Why don’t we look at how much energy someone can expend?
Monitoring these mainly ADLs and responsibilities and leisure activities is only useful if there’s some solution to the problems identified. But there isn’t.
 
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I really like the FUNCAP.

I think it's important to point out that they validated its use for a two week period.

It is also really about perception of functional capacity. It's not asking "when you did this", it's asking "if you did this"
 
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