Within a few days of being discharged from the hospital in March last year, it was clear I was not improving in any sort of recognizable way. My Covid symptoms morphed, and any attempt to push through the fatigue, migraines, and flu-like symptoms failed, often exacerbating their intensity. By late March, one thing became clear: Covid-19 was not going away – for me, or for many of the people I knew – and the road to recovery that lay ahead would be a marathon, not a sprint. I would have to pace myself accordingly.
I devised a daily schedule. I’d sleep as much as possible, and allow myself hours to complete my morning routine. Activities like making breakfast or brushing my teeth often had to be done while seated, with time allotted for rest afterward. This slow morning routine allowed me a few hours of work at my computer each afternoon, which I usually had to cease by 3 or 4pm when I began to feel the beginnings of a “crash.” I’d then spend the rest of the evening napping or watching television, or – during periods of intense light and sound sensitivity, which typically followed afternoons when I did on-air interviews or more exhausting tasks – lying still in darkness.
I fell into this routine because it worked, and I was listening to my body, but also because my financial privilege meant I could. My small savings along with some financial support from my and my partner’s parents allowed me to quit most of my paid work during those early months to focus on rest and pacing.
I am not the first person to remain ill after a viral infection, and I am certainly not the first person to utilize rest and pacing in my recovery. A few months after I fell ill I began to connect with people with myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS), a debilitating chronic post-infectious condition that affects millions of people, but has been historically unrecognized and underfunded for research. Many people with ME/CFS swore by rest and pacing, describing its effectiveness against an ME/CFS symptom called “post-exertional malaise” (PEM), which the CDC defines as “the worsening of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or even weeks.” This described my “crashes” after hours of work at my desk, and is now an emerging hallmark symptom for many with Long Covid.
Unfortunately, the importance of rest and pacing for people with ME/CFS and PEM has sometimes been downplayed in favor of more aggressive measures of supposed treatment. In 2011, a now-discredited study in the Lancet argued that a form of cognitive behavioral therapy (CBT), and what the researchers called “graded exercise therapy” (GET), were the most effective forms of treatment for ME/CFS because they forced patients to overcome a fear of exercise that the researchers argued was keeping patients ill. These claims have since been debunked, and the Centers for Disease Control (CDC) and other health agencies have stated that ME/CFS is an illness with biomedical origins which can be made worse by exercise, rather than an illness whose supposedly psychological roots can be conquered via GET and a bastardized form of CBT.
However, remnants of this debate persist and are now plaguing treatment discussions about long Covid. Some promoters of GET argue that long Covid’s origins are largely psychological. Others promoting versions of graded exercise therapy may be unaware of its negative impacts for people with post-exertional malaise.
Before I got sick with long Covid, I was a healthy, able-bodied 26-year-old in prime physical shape. I ran, biked, boxed, taught yoga, and lifted weights. I also tended to be quite competitive, especially when it came to beating my own personal records and pushing myself beyond my limits. I shouldn’t have to share these details for people to believe that my illness was real – not in my head, and not within my control – but claims that long Covid patients like me are lazy or causing our own illnesses unfortunately persist.
Of course, stories of patients’ recoveries, including my own, should be taken with a grain of salt. What works for one patient does not work for all, and this is especially true of “long Covid” – an umbrella term that often includes people whose symptoms and experiences range from post-ICU syndrome, to visible organ damage, to multi-systemic symptoms following a mild or asymptomatic infection. Thus, it’s helpful to examine the research on the effectiveness of rest and pacing versus graded exercise therapies.
In December, the Patient-Led Research Collaborative – which I work with as a long Covid patient advocate – published a study of 3,762 long Covid patients who first became sick between December 2019 and May 2020. The researchers found that 89% of respondents reported experiencing post-exertional malaise, with physical activity and stress listed as the most common triggers for crashes, followed by exercise and mental activity. The study also found that “pacing” was listed as the most common treatment that patients found helpful.
These findings are in line with similar ME/CFS research. A 2019 survey of 1,428 ME/CFS patients found that graded exercise therapy “brings about large negative responses” in 57-74% of patients, while pacing was favored as the most effective treatment for 44-82% of patients.
On Monday, the CDC released its interim clinical guidance on long Covid, for which I and other patient advocates provided feedback. The CDC guidance is a huge step in the right direction for Long Covid patients, as well as people with ME/CFS and related illnesses, in that it acknowledges and properly defines post-exertional malaise, recognizes the importance of rest and pacing as a treatment for Long Covid, guards against misdiagnosing symptoms as psychological, and cautions care in the use of exercise testing for patients with PEM.
However, the guidance also includes a confusing section about the use of “conservative physical rehabilitation,” stating, “gradual return to exercise as tolerated could be helpful for most patients,” and citing a 30-person study of mostly hospitalized patients with “self-identified rehabilitation needs” who were enrolled in a six-week program of aerobic exercise and strength training in the United Kingdom. It is unclear why this small study is being used to promote treatments for most patients with long Covid, including those with PEM and potential exercise intolerance. It is my hope that the CDC clarifies this point so that patients with post-exertional malaise are not mistakenly prescribed harmful exercise treatments.
As a Long Covid patient advocate and journalist covering Covid-19 patient issues, I frequently receive messages from fellow patients asking me for tips on recovery. Their questions are often the same: have you recovered? How did you do it?
It’s difficult to provide answers for several reasons. First, as many have pointed out, recovery from long Covid is not a light switch you can simply flip. This is a novel virus, and it may take years until we understand the true long-term impacts on those who have contracted it. I experienced daily debilitating symptoms from mid-March through June of last year, during which time the only treatments I pursued (other than initial supplemental oxygen in the hospital) were rest and pacing. In June I started to experience major improvements that allowed me to mostly regain my old way of life. I was able to accept a full-time job, walk and cycle around the city as needed, and return to a regular exercise schedule. Today, I can comfortably work full-time and exercise six times per week. My few remaining symptoms are minor and manageable. I strongly believe this recovery was only possible because of my early access to care and three months of intense, sustained, radical rest.
Second: as I am not a physician, I don’t prescribe treatments to patients, especially because I know first-hand the desperate hope that can come from believing something might cure you of your illness. I feel confident, however, in suggesting rest and pacing as crucial first steps for anyone who contracts Covid-19. For those who have only just developed long-term symptoms, I believe it can make the difference between swift recovery and long-term disability.
Finally, I know that while rest and pacing are the safest, cheapest, and most effective treatments to prescribe widely to people with long Covid, they are highly inaccessible to people who work and/or care for dependents. The ability to plan long breaks between periods of exertion is a privilege that was only available to me because of my live-in caregiver and financial support. Many of my friends in the Long Covid community who remain ill were managing full-time work or household responsibilities like childcare, while I was resting and pacing.
There is no doubt that economic inequality plays a part in long Covid recoveries. A recent study on long Covid found that patients with incomes under $75,000 had a 40% higher prevalence of symptoms 30 days after their onset, possibly indicating the impact of the ability to rest and pace early in one’s illness. The effectiveness of rest and pacing make obvious the need for greater workplace protections and an expansion of disability benefits for people with long Covid. Recovery should not just be an option for those of us with the economic privilege to access early care and take time off from work, but a reality for everyone who has remained ill after a Covid-19 infection.