I am struggling to interpret the 'functioning' bit of the Bateman Horne subjective rating tool which asks you to rate your functioning for that day on a scale on 1-10, how would you interpret it? To get around this issue with the pain question I got a descriptive pain scale and base my answers on the descriptions, I can't find something similar for functioning. The tool is from here https://batemanhornecenter.org/wp-c...-CME-PP-Restorative-Sleep-12.29.20-upload.pdf
The only scales I can think of for functioning relevant to ME/CFS are the Bell scale and the MEAssociation scale both of which 10 categories, I think. I think if I were doing it for monitoring myself I would make up my own scale and have 2 separate ones for physical and mental functioning. Is it about what you actually achieved that day, or what level of functional capacity you think you have? Given that ME is defined on several diagnostic criteria as limiting function by at least half, that would presumably mean the functioning scale has an unused top half for people with ME/CFS apart from on occasional upward fluctuations. Which effectively reduces it to a 5 point scale. Do they intend that to be the case here?
Ugh! The trouble with these function tools is that they never begin by asking what day you're on. Broadly speaking, I have four types of days: Preemptive rest time Capacity for some activity Post-activity rest to reduce PEM PEM, illness, or incapacitated by lack of sleep Answers to questionnaires often mean nothing without that context. For instance, on preemptive rest days I might have reasonable function, but I'm not free to use it for anything. I might not be completely floored on every post-activity rest day, but if I did anything more, I would be.
I might split it up to physical and mental, thanks. I tend to achieve the capacity I think I have, as in I max out according to what I think I can do (I know...pacing...but life's needs must), so the score would be the same regardless of the angle of questioning. Good point about the definition of ME and so usually only the bottom 5 would be applicable, I will look at the two scales you mention and go from there. Thanks!
This just goes to show how many predictions and decisions we have to make on an hourly basis, it's so complicated!
It's also relevant I think to ask what it's being used for. I assumed it is for daily quick recording of severity of symptoms and function, to help with pacing and possibly to provide data for studies. I don't think it could be used as a one off score that tries to summaries what our ME is like over the last month or year or whatever because, as Kitty says, it fluctuates daily.
It is for personal use only, a quick daily scoring so that I can keep an eye on changes and associate them with any medication/other changes I make. As you both say it is different every day, so I'll score it every day (well I'll try to!). I think I will use the Bell scale. It assumes we have the option to prioritise things other than work and assumes a certain level of cognitive functioning is equivalent to physical functioning so again I might split them out into two. If I didn’t try to work so many hours (from home) then I would be able to do more ‘activity’ (self care, housework), leave the house and have less symptoms, and fit more neatly onto the scale. It mentions symptoms at rest which are dependent on many factors, I suppose it might be relevant where it is describing the impact of activity upon functioning, its tricky where it once again groups the descriptor related to symptoms, with the functioning/activities, it assumes you'll fit into one group (much like some other tools).
It also doesn't specify whether working means going to a place of work or working from home, going to a place of work adds an entirely new level of activity which is completely unachievable for me but the scale only distinguishes between work that requires physical exertion and mentions physical labour, vs light duties..
I agree that's a problem, though it could be accounted for if you include the travel as part of the work day, so if the travel is physically demanding, then it's a physically demanding work day even if the actual work is sitting at a desk. And of course if you're using it for personal purpose only, you can use the Bell scale as a starting point and adapt it to your own circumstances, with the key being it enabling it to show up fluctuations within your personal limitations.
I will do that - include travel in the hours and also account for the 'being in an office/public environment' element.
