Partly repeating what others have already said but since I went to the effort of drafting it, here goes.
These questions really do seem to assume I'm having PEM right now - except for question 4 which confusingly doesn't mention 'in this moment' like the others.
But even answering them as if I'm currently having PEM I still had trouble. If I select activities important to me but which I can't do at all when in PEM I can choose 0% for questions 2 & 3 but question 4 makes no sense at all. It gets worse if I choose an activity important to me but which I can't do at all even when not in PEM. So this questionnaire only works, sort of, if you choose something you can do to some degree even in PEM.
1) Please specify the [...] activity that is important to you. [select from drop down menu]
2) How well can you complete this activity in this moment compared to a "good day?" [rate 0 not at all - 100% same as on good energy day]
3) How well can you complete this activity in this moment compared to before you became ill? [rate 0 not at all - 100% same as before ME]
4) What time, effort, and resources does it take to do this activity at the level you rated? [rate 0 none at all - 100% all my time, effort & resources]
I was additionally stumped by some of the questions in the middle questionnaire like, for example, having to decide on which single symptom changes most/least frequently and how often - impossible to ascertain in the full pea soup of symptoms. But maybe this middle questionnaire was merely intended as a distraction. In which case it wasn't enough of a distraction.
I aborted the survey before finishing. It's irrelevant if there's good test-retest validity (mine would have been 100% the same) if the questions asked don't reflect my reality at all. In fact I strongly suspect this sort of "validation" makes things worse for us. If you have to severely twist and torture your answers to fit the available options which don't remotely reflect your reality, then reporting the answers from such purportedly validated questionnaires lends them a credibility they don't deserve. Once there are figures printed in black and white nobody remembers how they were obtained and they take on a life of their own and that leads us down all sorts of blind alleys. Have seen it happen again and again and not just in ME research. It can only be stopped at the source, once data is out in the wild there's no reining it in.
