Interesting Performance Scale. In some ways I like it, and in others I have reservations. The levels 5-9 describe my improvement progression better than most scales of seen, so this one feels right to me there. It also fits what
I think ME/CFS might look like over the whole range.
Where I have a question is the 0-3 range. If ME/CFS requires a 50% reduction in activity level for a diagnosis, than a 50% reduction in activity level should be mild ME/CFS, right? (Crazy, I know, to call 50% reduction "mild") I wouldn't call the inability to work a few days a month a 50% reduction in activity, although I certainly would consider it indication of a serious health issue. By that logic, patients in the 0-3 range could not be considered ME or ME/CFS patients.
I'd also add one more level (or modify PS 9) for the very severe patients who cannot take care of themselves at all, even with help. Maybe that's just a semantic issue, though.
If it were up to me, I'd say this scale represents the scale of functionality of ME/CFS pretty well, and dump the 50% reduction in functionality requirement.
It looks to me that the levels break down something like this:
PS 0-1 : no ME
PS 2-3: either no ME if requiring 50% reduction in activity level, or
mild ME
PS 4-6: mild ME if requiring 50% reduction, or
moderate ME
PS 7-9: moderate/severe ME if requiring 50% reduction, or
severe ME
If that is the case, then this study only used non-ME - mild ME patients since the worst they got on a bad day was PS 6 and could be as high as PS 2 on a good day. Not a representative sample. I consider myself in decent (not great) shape for a PWME and I'm 5/6 on a good day. But maybe my perception of "decent for a PWME" is skewed having come from PS 9.
The PS grading score was at least one higher on the “bad day” (PS: 3–6) than on the “good day” (PS: 2–5) for each patient.
It's clear this research is very relevant to chronic fatigue patients. I wonder how much it applies to ME patients. IMO, Julia Newton studies OI and/or chronic fatigue patients and conflates that with ME patients. Can someone who can access the full paper tell us what definition this research used to define ME patients?
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.
ETA: I started a new thread here to discuss severity scales so that I don't take this thread too far OT.