An Adaptive Pacing Intervention for Adults Living With Long COVID: A Narrative Study of Patient Experiences of Using the PaceMe app 2024 Meach et al

Abstract

Adaptive pacing (AP) is a self-management technique which seeks to balance energy and rest in individuals with chronic health conditions. Adaptive pacing can help people with myalgic encephalomyelitis/chronic fatigue syndrome learn how to manage their energy expenditure thereby reducing their risk of post-exertional malaise (PEM) and other symptoms. Given some symptom similarity, AP also has rehabilitation potential for people experiencing disability from long COVID.

The purpose of this study was to explore patient experiences of an AP intervention (the “PaceMe” app) to determine its value for individuals experiencing long COVID. Twenty-five participants each took part in two narrative interviews (at intervention start point and at 3-6 months). Data were analyzed using narrative thematic analysis.

Our analysis identified 4 themes relating to key benefits of the PaceMe app: (1) PEM management, (2) Support, (3) Validation, and (4) Control and Agency. By illuminating the critical facts and centring patient voices, these findings contribute a better understanding of the experiences and needs of those with long COVID and highlight the value of a digital health intervention as a vital component of rehabilitation.

Open access, https://journals.sagepub.com/doi/10.1177/23743735241272158

 

Does include Nathalie Hilliard, one of the 4 Physios for ME and a person from LC Scotland in the authors.

Uses HR monitoring:

"During enrolment in the study, participants were allocated time and heart rate (HR) limits of attempting to spend no more than 30 min per day above 60% of their age-predicted HRmax. Participants would receive alert notifications when they reached 50%, 75%, and 100% of their time limits. Alerts included a text notification regarding the percentage of their time limit they had reached, as well as an infographic containing a suggestion for good pacing habits curated from responses from people with ME/CFS who had been using pacing for several years."

Better than some studies, though some of the 25 studied were able to do a reasonable amount of activity at start.

 

That's odd. They seem to get it. But the abstract alone says not to bother reading further. They know the words, they just don't know what any of them actually mean.

No idea what the point is of adding 'adaptive'. Pacing already is, there is no greater degree of adaptation to be had here. And it does not teach anything anymore than eating from a trash can when you are homeless 'teaches' anyone to save money on food. Most people know how to do this intuitively, it's getting the help needed to achieve it that is the problem, nothing an app can do.

The suggestion that this is rehabilitative just makes it very clear they don't understand what either pacing or PEM is. They really approach it like someone with a fixed income just above the poverty working through a budget to get out of debt. It doesn't work like that.

Even the themes are aspirational. It would be great if we could have those things. But if we could have those things, we wouldn't be ill. An app can't bring those things anymore than it can bake bread.

So as I said, not reading further. No point in that. For sure this is better than anything biopsychosocial, the lowest bar in the known universe, but if people get the message that all it takes is a digital app for self-management, then what is the point of doing anything here? Why bother developing treatments? Now that's the kind of holistic thinking no one ever seems to do in health care, the kind that involves all the things that happen outside of their immediate awareness.

 

That's my concern too.

It sounds like one of those alternatives to prison sentences that courts hand out.

The thing chronically ill people miss most is the ordinariness of normal life. The stuff that's dull when you're healthy, because you can't imagine not being able to grab a quick shower without planning it into your week. Moving newly-ill people even further away from normality with regimented pacing via an app surely can't be a good thing for their wellbeing.

How do you begin to adjust to a new reality when you feel your every move is being controlled? It'd make me resentful and mutinous—it's quite bad enough dealing with a really difficult illness, without having a phone nagging me all the time as well.

The next thing would be health professionals telling me I'm not complying with the therapy, which comes with some very scary risks.