Open International: Dr. Todd Davenport, PEM/PESE Activity Survey Study, Nov 2021

so for the 1st activity i picked basic interactions. By the time i filled out the survey i am now strugging therefor less able to do it than when i started, how that can possiby test for consistency? when doing the survey itself will drain battery so 2nd answer it will be less able always than before

 

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.

 

Well I'm glad it wasn't only me.

I wonder how many of the questionnaires used in research only get answered in a certain way because the person filling them out a)doesn't fully understand b)might be suffering from cognitive difficulties anyway, c)just fill them out 'the best they can' because they can't ask for further explanation or simply don't want to appear stupid.

 

It's as if trying to rename ME/CFS to instead be PEM, simply because PEM is a cardinal symptom. Like renaming migraine to be Zig-Zag Lights.

 

https://twitter.com/user/status/1461455657547096064


has anyone else contacted him to tell him about the problems with this survey?