By David Tuller, DrPH
The Journal of Orthopaedic & Sports Physical Therapy recently published an editorial called “Humility and Acceptance: Working Within Our Limits With Long COVID and Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome.” The editorial emerged from a collaboration between rehabilitation specialists and patients, mostly from Canada. It confronts the conundrum of whether those experiencing what is called Long COVID should be advised to exercise, explicitly linking the issue to the history of misguided interventions for ME/CFS and the symptom of post-exertional malaise.
It is indisputable that people can become deconditioned during post-viral convalescence, to a surprising degree. Thirty years ago, a bout of bronchitis that lasted a couple of weeks left me exhausted and winded for what seemed like months. I was shocked at how debilitated I was. And as I gradually regained my strength, I gradually did more and returned to my former level of fitness. I didn’t need a rehabilitation program, other than some initial reassurance from my doctor that what I was experiencing was well within the parameters of a normal recovery.
The presumption behind the recommendation of graded exercise therapy in ME/CFS is that patients are deconditioned the same way I was post-bronchitis. Yet they get stuck in that phase because they mis-interpret their symptoms as arising from something more insidious and dangerous—specifically, underlying pathophysiological processeses–and spend too much time in bed. Within this framework, a program of slow increases in activity has been posited to lead to improvement and full recovery from ME/CFS.
Simon Decary, the lead author of the JOSPT editorial, is a physiotherapist and assistant professor of rehabilitation at the University of Sherbrooke, in Quebec. I asked him about his interest in this area and how the editorial came about. He began working with hospitalized COVID-19 patients last year, he said, and then became involved in efforts to develop rehab programs with an exercise-based approach.
During that process, he was contacted by ME/CFS and Long COVID patients who explained to him about the symptom of post-exertional malaise. He reviewed the PACE trial and related research and recognized that it provided a deeply flawed body of evidence. Here’s what he said:
“I took the time to read everything that was sent to me about PACE etc. As a researcher in patient-centred care, I was and still am traumatized by what I read. A small group of clinicians realized that our colleagues were doing nonsense with patients all over again and that the evidence could not keep up with the speed at which clinicians were implementing exercise-based therapy. So we asked patients to design the safety message: “What would you have liked to know at the beginning of your disease that you “think could have prevented at least some disabilities?” This is how the editorial came to be.”
Here’s a key passage from the editorial:
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 se- verity 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…Clinicians may be promoting a dangerous message that could lead people with long COVID down a path of endless cycles of over- exertion and relapse.
The editorial highlights data from surveys of Long COVID patients in which significant numbers reported deterioration after exertion. To be sure, it is hard to tell from questionnaire whether all of those reporting such difficulty have what is defined in ME/CFS as PEM. But even assuming biases in the data, it is clear that the phenomenon is not unknown among the wave of Long COVID patients. Given that, advising caution in dispensing guidance about exercise is certainly warranted. The editorial recommends pacing and suggests that clinicians monitor patients for PEM using the DePaul Symptom Questionnaire.
One of the infuriating aspects of the whole debate is how those who promote the psychogenic paradigm for ME/CFS treatment—and by extension for Long COVID as well—presume that critics are motivated by a lack of understanding of mind-body interactions and a prejudice against psychiatry. This notion is unjustified and insulting. The research behind the psychogenic approach has been exposed as subpar and the results are not actionable.
It is understandable that those who have invested their reputations and careers in it have trouble accepting what has happened, and why. If they need help in coping, they should certainly seek it out. But public health authorities should not rely on their misguided and poorly designed “science” for solutions. And as this cogent editorial suggests, it is unacceptable to inflict these bogus results on patients seeking legitimate medical care.