Humility and acceptance: working within our limits with Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, by Simon Decary, Isabelle Gaboury, Sabrina Poirier, Christiane Garcia, Scott Simpson, Michelle Bull, Darren Brown, Frederique Daigle in Journal of Orthopaedic & Sports Physical Therapy Vol 51, #5, pp 197-200, April 30, 2021
The term long COVID was coined by patients to describe the long-term consequences of COVID-19. One year into the pandemic, it was clear that all patients-those hospitalized with COVID-19 and those who lived with the disease in the community-were at risk of developing debilitating sequelae that would impact their quality of life.
Patients with long COVID asked for rehabilitation. Many of them, including previously healthy and fit clinicians, tried to fight postviral fatigue with exercise-based rehabilitation. We observed a growing number of patients with long COVID who experienced adverse effects from exercise therapy and symptoms strikingly similar to those of myalgic encephalomyelitis (ME). Community-based physical therapists, including those in private practice, unaware of safety issues, are preparing to help an influx of patients with long COVID.
In this editorial, we expose growing concerns about long COVID and ME. We issue safety recommendations for rehabilitation and share resources to improve care for those with postviral illnesses.
The Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Community to the Rescue
One community that understands the impact of living with prolonged debilitating symptoms and multisystem dysfunction from postviral illness is the myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) community. Myalgic encephalomyelitis/ chronic fatigue syndrome is a severe multisystemic disease characterized by the hallmark symptom of postexertional malaise (PEM), a disabling and often delayed exhaustion disproportionate to the effort exerted. Millions of patients live with ME/CFS, and in 80% of them the illness followed an infection.
The scale of the COVID-19 pandemic concerns the ME/CFS community, because the postviral illness will affect many. In response to the increasing emphasis on exercise-based rehabilitation for long COVID, those in the ME/CFS community have raised their voices to warn clinicians of the dangers of recommending such protocols.
The history of ME/CFS with exercise is one of false hope.
More than 3 decades of trying exercise in this population can be summed up in one sentence: exercise can be harmful, sometimes life threatening, and should be avoided.
Postexertional malaise manifests as an abnormal physiological response to physical or cognitive exertion. It can be triggered after a daily activity, such as a shower, and result in a severe combination of flu-like and neurological symptoms and crushing fatigue. In most patients, the onset of PEM is often delayed by 24 to 72 hours, followed by unpredictable severity of immune, neurological, cognitive, and gastrointestinal symptoms that may persist for days, weeks, or permanently. Anecdotes of PEM are emerging from people living with long COVID.
The organization Patient-Led Research for COVID-19 describes PEM as a persistent symptom of COVID-19. In an online survey of 3762 people living with long COVID, 89.1% of respondents experienced “worsening or relapse of symptoms after physical or mental activity during COVID-19 recovery.” Postexertional malaise was most often triggered by physical activities and exercise. Close to 75% of people living with long COVID still experienced PEM after 6 months. Even accounting for sampling biases from this online survey, this description of symptoms after the 6-month mark makes the overlap between diagnoses of long COVID and ME/CFS a serious possibility. The potential global scale of people affected is staggering.
First, Do No Harm
The beloved “exercise is medicine” maxim is rooted in ancient Greek medicine,12 as is the oath of “do no harm.” Clinicians may be promoting a dangerous message that could lead people with long COVID down a path of endless cycles of overexertion and relapse. We propose 2 key, immediate patient-safety actions for all clinicians, including physical therapists in private practices, who are involved in delivering care for people with long COVID and ME/CFS.
Screen and continuously monitor for the presence or development of PEM during follow-up of people living with long COVID and ME/CFS. We propose that clinicians use the validated 10-item DePaul Symptoms Questionnaire (Appendix A in Cotler et al2). This questionnaire helps clinicians describe the frequency and intensity of PEM. For clinicians involved in developing service pathways for long COVID, an extended form is also available and should be combined with additional assessment procedures, such as orthostatic intolerance testing.
To all people living with long COVID and ME/CFS, promote the message “Stop. Rest. Pace.”
This approach, proposed by the ME/CFS community, emphasizes that clinicians’ main advice to patients should be to avoid continuous overexertion cycles of PEM and focus on rest and energy pacing. Pacing is an approach to activity management used within ME/CFS to prevent triggering PEM and may be acceptable for people living with long COVID who experience relapses with exercise.