CDE Detailed Report

Guidance on "PEM Determination Method:" The standard method for evaluating the "Global PEM Determination" is a two step process in which the study participant responds to the DSQ PEM questions and the researcher then evaluates those responses in light of other information about the study participant to determine whether the study participant has PEM or not. In making this determination, the researcher or clinician will need to consider whether there are other conditions, such as overwork, that could result in a false positive DSQ PEM subscale response. On the other hand, the researcher or clinican should also consider whether the study participant responded negatively because, for instance, they carefully manage their energy expenditures with pacing to avoid episodes of PEM. In addition to asking questions about workload and pacing, the researcher may also ask what happens to the study participant if/when they engage in physical or mental activity and whether there are activities they avoid because it exacerbates symptoms. In addition to their own examination of the study participant, the researcher may also consider information from other sources like medial records but these should be carefully considered, as they might not reflect an accurate understanding of the nature of PEM.

While the above method should be used in all studies, there may be certain types of studies, such as patient surveys or studies of existing samples in which it is not possible to use this two-step method. In those limited instances, the researcher may be able to use information from other sources, such as patient reports and medical records as the basis of the Global PEM Determination. These other choices, particularly self-report and resports by other medical providers, are not recommended because these reports by other medical providers, are not recommended because these reports of PEM have not been verified.

The following choices are provided to capture the method used to determine PEM:
• The 2-step DSQ PEM/researcher evaluation process (recommended)
• Previously reported by ME/CFS Specialist
• Previously reported by other Medical Provider who is not an ME/CFS specialist
•Patient reported- using DSQ PEM questions
•Patient-reported- other sources
•Other, specify
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Multiple choices can be selected if appropriate. The first choice should only be selected when the two-step process described above is used.

Guidance on "Global PEM Determination: Regardless of the method used as described in the previous section, the presence of absence of PEM is captured in this field using one of the following choices:
•Yes
•No
•Inconclusive
•Not Evaluated