COVID long-haulers often experience “crashes,” known formally as post-exertional malaise (PEM) or post-exertional symptom exacerbation (PESE), where they feel utterly exhausted after even minimal physical, mental, or emotional exertion. Some experts have recommended “pacing,” a gradual, systematic return to one’s previous physical activity level. A U.K. pacing program study led by Leeds Community Healthcare NHS Trust tested the efficacy of this recommendation.*

What the researchers did

Conducted in collaboration with the University of Leeds and Leeds Beckett University, the study followed 31 Long COVID patients over age 18 for approximately 17 months. The rehabilitation program involved six (6) weeks of clinically supervised physical activity of gradually increasing intensity that prepared participants for a return to their normal activity.

There were five (5) activity levels, the first involving breathing exercises and gentle stretching, and the fifth consisting of activities that patients were doing prior to getting sick. 

• All activities were performed at home.
• Patients stayed at each level for at least a week to avoid overexertion.
• Weekly clinician monitoring was done to check progress.
• Weekly crashes and exertion levels were reported.

It was decided each week whether patients could move to the next level. Advancement could only happen if their Long COVID was stable.

What they found

As described in the Journal of Medical Virology, the results showed that none of the 31 patients were able to progress through all five activity levels, though some patients made progress.

• 13 patients finished the program at a higher activity level than when they started.
• 12 patients finished at the same activity level at which they started.
•   6 patients finished at a lower activity level.

Notably, most patients did report fewer crashes, regardless of whether or not they progressed or regressed in activity level. The researchers say that this underscores a foundational principle of pacing rehabilitation which requires activity levels to be planned in advance to stay within available energy limits and avoid crashes.

A participant’s perspective

One participant, healthcare worker Elizabeth Bycroft, 52, had returned to work after only a week of home recovery post-hospitalization. In hindsight, she says, it was probably too soon. She relapsed and had been plagued by shortness of breath, chest pain, and exhaustion since.

Bycroft says that, during the study, the weekly discussion with her support worker about her symptoms and feelings after exertion kept her motivated to do more, yet within limits to keep her Long COVID in check. “If I was feeling good, I would move on to the next phase.” She started with about three crashes per week and finished the program with about one a week.

Though she still gets breathless at times, and still can’t perform all her normal activities, she is able to go walking, and her days of being completely exhausted are growing fewer.

What it means

After reviewing the study results, the researchers concluded that structured pacing “significantly reduces PESE episodes and improves overall health in PSC [post-COVID syndrome].” They write that there’s an “urgent need for more research” on the effects of a longer program on PESE at all stages of Long COVID. Too many clinicians, they say, aren’t aware that pacing activity can aid recovery.

*University of Leeds. (2022, December 16). Impressive results with long COVID pacing trial. https://www.leeds.ac.uk/news-health/news/article/5219/impressive-results-with-long-covid-pacing-trial