Complex study design - deep phenotyping combined with provocation maneuver and longitudinal follow-up
Passive exercise with massage cuff, but in #MECFS induces PEM in 90 minutes. Extract plasma and PBMCs, use braincheck test, first morning urine, exoskin to measure HRV
Participants complete questionnaires. How severe was their PEM?
Repeat at 3, 6, and 12 months with stress test. Are they improving? Regressing?
Study circulating micro RNA. Searching for #MECFS signature in #LongCOVID
DNA makes messenger RNA which gives instructions to make proteins
Micro RNA are non-coding epigenetic regulators, attach at the end of the messenger RNA. Block protein production. 1 micro RNA can target hundreds of genes
Funcap - Functional Capacity Questionnaire in #MECFS
How do you access functional capacity?
5857 responses from #MECFS patients (online anonymous, spread via social media)
Questions like "can you X? How often do you Y?" don't work, because it is context dependent. It depends on what else the patient has decided to do, doesn't take consequences into account