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ME/CFS Science

1) Had a closer look at this randomised trial on pacing from earlier this year. It tested an app, warning system, and wearable device to help Long Covid patients pace, but unfortunately, it didn't have an effect on post-exertional malaise (PEM) and other symptoms.

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ME/CFS Science

2) The researchers developed the 'Pace Me app", aimed at supporting patients with their energy management and prevention of symptom worsening. It helps to log PEM and other symptoms and uses heart rate and step count data from the Fitbit Charge 5.

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ME/CFS Science

3) The intervention uses a personalised activity allowance, initially set to no more than 30 min of activity above 60% of the (age-predicted) maximum heart rate. This allowance was then iteratively adjusted in response to participants’ activity and PEM reports.

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ME/CFS Science

4) For example, if participants reported PEM but had remained neatly within their allowance, then it means the limit was too high and needs to be reduced. Curiously, they also adjusted the limit if patients did not report PEM for three consecutive weeks.

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ME/CFS Science

5) One might think that reporting no PEM is a good thing and a sign of effective pacing. But in this intervention, they increased the allowance, perhaps to encourage patients to try to do more?

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ME/CFS Science

6) The Pace Me app featured a home screen that displayed real-time tracking showing how much of their day’s energy allowance had been used. And they received notifications if their activity exceeded specific thresholds (namely at 50%, 75%, and 100%).

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ME/CFS Science

7) Controls received usual care and only had access to some questionnaires in the app. 250 Long Covid patients with PEM were randomized. The primary outcome was the first 5 questions of the DSQ-PEM questionnaire.

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ME/CFS Science

8) The results are shown below: there was basically no improvement in PEM scores. Secondary outcomes (mental health, severity of problems in usual activities, anxiety and depression, fatigue, and breathlessness) did improve but equally in both groups.

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ME/CFS Science

9) The authors note that "the substantial recovery rates previously reported in LC, coupled with our wide inclusion criteria, may have masked intervention effects." This is not the first study, though, that couldn't find a clinically significant effect of pacing.

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ME/CFS Science

10) Link to the paper: Sanal-Hayes et al. 2026. A digital platform with activity tracking for energy management support in long COVID a randomised controlled trial.

A digital platform with activity tracking for energy management support in long COVID: a randomised controlled trialNature Communications - Long COVID is associated with challenges in energy management, with limited interventions available. In this study, a just-in-time app-based energy management intervention...www.nature.com
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calltobase

So wait they didn’t include PEM as a criteria for a pacing app? Isn’t that counter intuitive? And then adjusting threshold up automatically supposes improvements as soon as you stabilize which from patient experience just isn’t true sadly. Not so surprised it failed now

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Michiel

Didn't I see you argue elsewhere that dsq-pem isn't an outcome measure but rather a screening tool? And they were using step count for their pacing algorithm, but didn't include it in outcome measures? Would have loved to see % step count change over time.

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Lucibee

Ah yes. Now I remember why I had concerns about this paper. Yet another to use a screening tool as an outcome measure. 🙄

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Andreas Longva

Increasing the limit like that sounds like a good approach if you wanted to trap patients in a cycle of PEM. Somehow I don't think that was the researchers' intention.