In the News From Germany thread, I posted about how I emailed a researcher about an upcoming study on sleep in ME/CFS. Snippet from my email:
Snippet from Claudia Schilling's response:
Does any metric exist for assessing whether one is in a crash at the moment, and/or how bad the crash is? One possibility I came up with:
@Ravn suggested this:
I am writing to ask that you take into consideration that sleep biomarkers may be affected by exertion in ME/CFS.
Snippet from Claudia Schilling's response:
Your email now gives us the valuable tip that in addition to recording the general presence of PEM, we should also record how things looked in terms of PEM in the days immediately before the study examination.
As far as I know, there is no standardized instrument for this. In my opinion, it makes little sense to record the activity level directly before participation in the study, as PEM is triggered individually at very different activity levels. Nor do I know of any instrument that measures the current (rather than general) level of post-exertional malaise. Are you aware of such an instrument?
Otherwise it would be an option to record this in a free question.
Does any metric exist for assessing whether one is in a crash at the moment, and/or how bad the crash is? One possibility I came up with:
“On a 1 to 10 scale, where 1 means you are at baseline and not at all in a PEM crash, and 10 is the most your symptoms have ever increased after exertion compared to your baseline, how would you rate your PEM level today?”
@Ravn suggested this:
I'm not aware of any validated standardised instrument, or any really, for this. So an open question might be the best way to go for now. Maybe two questions:
The first question could theoretically be supported by actigraphy for, say, a month before the study day itself, funding and time permitting
- In the last x number days, were you more active than usual?
- Are you currently experiencing PEM?
Many studies don't take pre-visit PEM into account so it's worth drawing attention to, beyond this present study. In any particular study PEM or non-PEM may turn out to not be relevant but we won't know until we can look back with the benefit of hindsight. Until then participants' PEM-state on the day of any tests would seem an important data point to record. Question is how best to do this