calltobase.bsky.social

26 outubro 2026 20:08

I still think fitness trackers are under utilized. They might not be perfect but leagues better than unverified Proms

ME/CFS Science

mecfsscience.org

26 outubro 2026 20:08

9) The paper also mentions that hardly any trials consider mast cell activation symptoms such as pruritus and flushing. For non PROM outcome measures it recommends to include return to work and actimetry and also to assess re-infection with Sars-Cov-2.

ME/CFS Science

mecfsscience.org

26 outubro 2026 20:08

6) 54% of PROMs in LC or ME/CFS clinical trials mainly assess fatigue. In contrast, PROMs that specifically assess PEM are only used in 18% of LC and 5% of ME/CFS trials. Often the DSQ-PEM is used for PEM but it has multiple problems (e.g it doesn't consider symptom delay).

ME/CFS Science

mecfsscience.org

26 outubro 2026 20:08

5) Other issues in PROMS used in ME/CFS trials are lack of patient involvement in development, ceiling and/or floor effects where many patients score the the maximum/minimum, and failure to take successful pacing into account (as this reduces symptoms).

ME/CFS Science

mecfsscience.org

26 outubro 2026 20:08

4) The Chalder Fatigue Scale is the only ME specific PROM that has been evaluated for content validity by cognitive interviewing (the current standard) and it performed very poorly. 5 items lacked clarity and it asks patients to rate their according to their life before illness.