Assessing Functional Capacity in [ME/CFS]: A Patient Informed Questionnaire [FUNCAP], 2024, Sommerfelt et al

Totally agree

Are you specifically looking for a scale of right now function? As opposed to how people are feeling symptomwise?

I like the FUNCAP and it works well for me for what it's designed for, i.e. it gives a fairly accurate picture of my overall function in part because it smoothes out hourly and daily fluctuations

I'm less convinced about using it to track those short-term fluctuations, for me it doesn't capture them as well. I suspect that the FUNCAP scale is too coarse grained for that. My symptoms often worsen significantly without my function reducing by enough to register as a change on the FUNCAP scale

Also, for regular repeat testing we need something much shorter. For the majority of pwME a regular FUNCAP would be unrealistic

To capture daily fluctuations, or the time course of PEM over hours, I think the best measure would be a single slider with 'not feeling ill' at one end and 'feeling extremely ill' at the other end with the instruction to move the slider relative to the previous time (I think you or someone proposed a version of that earlier?). This could be supplemented by tracking a selected few - but only a very few - specific symptoms that are of particular interest in a particular study, also via the slider method

Need to be careful with terminology. We discussed elsewhere how people mean a thousand different things with 'fatigue' so I wouldn't ask about fatigue at all (it's effectively included in 'feeling ill' anyway). We also discussed somewhere how some commonly used questionnaires (not ME specific but just general ones) ask about a rating for overall health and how even some people with severe ME rate their general health as good, possibly because the ME state becomes the normal baseline and if you have few other health problems on top of that - no cancer, no arthritis etc - you consider your health as 'good', at least as long as you're not specifically prompted to consider your ME

Which proves your point, we need something validated for ME

 

OK, so "severe" as a prospective concept was a little nebulous, instead I've gone with an alternative strategy: "bedbound". So if you are bedbound then anything outside the house or things like standing in the shower are not going to be possible, so they are hidden from the display and automatically answered as "Unable to do". I've left a little wiggle room because some people can be essentially bedbound but can stagger around to the bathroom briefly for example. Screenshots of how this looks —



If you decide to switch off the "I'm bedbound" option, the whole list (27 or 55) is displayed and the questions marked "unable" become unanswered. That way you can easily change your mind and not lose entered data.

Then you can share a PDF report to clinician/researcher or your own files, which currently looks like —



The blank space could either hold a printout of the specific answers, although that's probably better detailed on page 2. I think the best thing to go there would be a dump of all the actigraphy metrics the phone automatically captures, so you have objective data to complement the patient's subjective assessment. Eg for the last month: daily average step count, distance walked, walking speed, walking asymmetry, walking step length, 6 min walk distance, active energy burnt, stand minutes, HRV, max/min/av HR; and sleep stages, SpO2, resp rate and BP if recorded.

 

I agree, for me, now I have got out of rolling PEM and am not continuously feeling desperately unwell, the measure that seems to mean most is how much time in the day I am able to be upright and active and how much time I have to spend horizontal, without getting worse overall.

 

I totally agree , apart from when I’ve over exerted I can end up spending whole nights needing a wee every 30mins sometimes less. Eventually of course this all resolved into a crash out stage. But I’d like to feel reassured patterns like that can be separated out because I’m certainly ‘not good’ and indeed that’s worse than when I can finally start healing at that point and it’s distinctive so no need for it to be confused with ‘feeling well’ but is a horrible past limits and beyond dropping point beyond pushing thru situation.

I think as long as it’s sensibly analysed individually looking for patterns and not aggregated across people it would work.

 

I quite like the up-time vs down-time measure provided it's automatically collected by a reliable device.

However, it just occurred to me that in my case this measure correlates both with better and with worse periods. I've no actual data to back this up but the two main reasons I spend more time lying down or reclining are

a) PEM - I feel crap and do very little

b) strict pacing with lots of preemptive rest - I feel ok-ish but also do very little

So for me more time upright is a sign of overdoing things, not a sign of improvement - which is what it may be misinterpreted as by some researchers

I guess my main two points are that to make sense of the data

1) you need a combination of upright time measures and some sort of symptom scale

2) increased up-time must be interpreted with caution, it may be a sign of overexertion if followed by a crash, or it may be a sign of improvement if it's sustained over a long period, I'd say at least for a full month (there was some study that found pwME could increase their activity for about two weeks before crashing, or something in that ball park)

 

This interests me too, as I think it's possible increased time upright might be an indicator of PEM in some of us. Yesterday, for instance, I had to make the trip to get my dinner out of the oven five times. I forgot the cutlery, then the bread, then my drink; then I dropped my knife on the floor and had to go back for a clean one; then I realised that if I didn't clean up the sauce that had splattered off the knife I'd never get the stain out of the rug, so I had to fetch a cloth.

It's a pretty good example of what happens to my function in PEM. I end up doing many times more activity, partly because my cognitive function's gone, and partly because my muscle control's gone and all my movements are exaggerated.

 

I agree, but i honestly dont think time upright is a good measure of overall function or state.

partly because as Kitty describes below, simply being in PEM (with it's affects on muscle function, coordination and cognitive function)involuntarily increases time upright

I had to laugh as i read it, because it describes my experience so well.

In addition, I (& i'm sure many others), do 98% of all cognitive energy expenditure while horizontal. I simply cannot sit up & do it, ditto with sensory input, if i want to listen or watch something, i must be horizontal.

so for example if i need to do more cognitive stuff because of a choice or something in mylife requiring it - which happens a lot! - or if I get caught up in an S4 thread, or for example when i need to research some item i need to buy, look into something, or need to do "a lot" of talking on phone/zoom etc. Plus anything crafty or creative, i will be horizontal much more than if those things either arent as necessary, or i have to go to medical appointments etc which require time upright that i am not really able to do without it causing a major crash.

So time horizontal can indicate a multitude of things. It could indicate much better function in that I am i am able to do the reading, listening, thinking, typing, social contact (through phone/zoom/messaging) that i need to.

So it could indicate both ends of the spectrum, - i may be well rested but spend much more time horizontal because thats the only way to do that stuff (or to maximise the time i can spend doing it - eg reading while sitting up = 5 mins, reading while horizontal 10mins & ditto for talking listening watching etc.)

Or yes it could be i more horizontal because i'm v ill/PEM & cant do anything.

So time uprigh/horiazontal isnt a good measure of how i am & nor are steps, for the same reason.

 

I think if you are using time points that are properly longitudinal eg a year plus to see if a treatment worked or you are pushing through on adrenaline etc

my most recent doing too much I’d say the less you just overdo it sadly the longer you do it fir and it can be six months then you realise that was deterioration inducing level. Although there’s an argument I never get things right g my threshold so just always going down

would time actually horizontal work? I’m asking myself just as much here

ie exclude counting up time in the same way and just focus on how horizontal because the more poorly I feel the more I even have to have my face right against something and lie flat and be completely supported. So if I’ve got up lots for wee etc but that (absolutely horizontal, no sitting up at all) goes on for 20hours it’s not ‘good’ but ‘interrupted rest’

there’s a lot of thinking thru context on this one eg if I did an exertion like a specific appointment would less time horizontal in the weeks after that (vs when I did exact same two months before) indicate I was getting better? Obviously there’s the issue of cumulative exertion too (which an app might be able to see )..

I’d still want to combine it with ability to/ time spent brushing teeth (and if I have to sit leaning against bath when doing that) and showering etc I think for triangulation…