Sunday, January 16

I rested my way to recovery from a long Covid. I urge others to do the same | Fiona lowenstein

WWithin days of being discharged from the hospital in March of last year, it was clear that he was not improving in any recognizable way. My Covid symptoms morphed and any attempt to overcome fatigue, migraines, and flu-like symptoms failed, often exacerbating their intensity. At the end of March, one thing became clear: Covid-19 would not go away. for me, or for many of the people I met – and the road to recovery ahead of us would be a marathon, not a sprint. He would have to pace himself accordingly.

I devised a daily schedule. I slept as much as I could and allowed myself hours to complete my morning routine. Activities like making breakfast or brushing my teeth often had to be done while sitting, with allotted time to rest afterward. This slow morning routine allowed me to work a few hours at my computer each afternoon, which I usually had to interrupt at 3 or 4 in the afternoon when I started to feel the start of an “accident.” Then he would spend the rest of the night napping or watching television, or, during periods of intense sensitivity to light and sound, which generally followed the evenings when doing on-air interviews or more strenuous assignments, he would lie still in the dark. .

I fell into this routine because it worked and I was listening to my body, but also because my financial privilege meant that I could. My small savings along with some financial support from my parents and my partner allowed me to quit most of my paid work for those first few months to focus on resting and walking.

I am not the first person to remain ill after a viral infection, and I am certainly not the first person to use rest and pace in my recovery. A few months after I became ill, I began to associate 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 Y insufficient funds for research. Many people with ME / CFS swore by rest and rhythm, describing its effectiveness against a ME / CFS symptom called “post-exertional malaise” (PEM), which the CDC define as “worsening of symptoms after minor physical or mental exertion, with symptoms usually worsening 12 to 48 hours after activity and lasting days or even weeks.” This described my “accidents” after work hours at my desk, and is now an emerging hallmark symptom for many with Long Covid.

Unfortunately, the importance of rest and rhythm for people with ME / CFS and PEM has sometimes been downplayed in favor of more aggressive presumed treatment measures. 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 their fear of exercise that the researchers argued kept patients sick. These statements have has since been discredited, and the Centers for Disease Control (CDC) and other health agencies have stated that ME / CFS is a disease of biomedical origin What can be worsened by exercise, rather than a disease whose supposedly psychological roots can be conquered through GET and a bastard form of CBT.

However, the remnants of this debate persist and are now plaguing discussions of prolonged Covid treatment. Some GET promoters argue that Covid’s long-standing origins are largely psychological. Others who promote versions of gradual exercise therapy may be unaware of its negative impacts for people with post-exertional discomfort.

Before I became ill from prolonged Covid, I was a healthy and capable 26-year-old in excellent physical shape. He ran, biked, boxed, taught yoga, and lifted weights. I also tended to be quite competitive, especially when it came to breaking 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 is real, not in my head or under my control, but claims that long time Covid patients like me are lazy or cause our own illnesses sadly persist.

Of course, patients’ recovery stories, including my own, should be taken with a grain of salt. What works for one patient does not work for everyone, and this is especially true in the case of “prolonged Covid,” a blanket term that often includes people whose symptoms and experiences range from post-ICU syndrome, visible organ damage, multisystem symptoms after a mild or asymptomatic infection. Therefore, it is useful to examine the research on the effectiveness of rest and pacing versus gradual exercise therapies.

In December, Patient-led research collaboration – that I work with as a long-time Covid patient advocate – posted A study of 3,762 long-time Covid patients who became ill for the first time between December 2019 and May 2020. The researchers found that 89% of respondents reported experiencing post-exertional discomfort, with physical activity and stress listed as the most common crash triggers, followed by exercise and mental health. activity. The study also found that “pacemaker” was listed as the most common treatment that patients found helpful.

These findings are consistent with similar research on ME / CFS. TO 2019 survey of 1,428 ME / CFS patients found that gradual exercise therapy “produces large negative responses” in 57-74% of patients, while stimulation was favored as the most effective treatment for 44-82% of patients .

On Monday, the CDC released its Interim Guidance on Extended Covid, so I and other patient advocates provided comments. The CDC guide is a big step in the right direction for Long Covid patients, as well as people with ME / CFS and related illnesses, as it recognizes and define correctly post-exertional discomfort, recognize the importance of rest and rhythm as a treatment for Long Covid, protects against misdiagnosing symptoms as psychological, and precautions beware in the use of stress tests for patients with PEM.

However, the guide also includes a confusing section on the use of “conservative physical rehabilitation”, stating that “gradual return to exercise as tolerated could be helpful for most patients” and citing a 30-person study of mostly hospitalized patients with “rehabilitation needs self-identified “who were enrolled in a six-week program of aerobic exercise and strength training in the UK. It is unclear why this small study is being used to promote treatments for the majority of patients with prolonged Covid, including those with PEM and a possible exercise intolerance. I hope the CDC clarifies this point so that patients with post-exertional discomfort 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 other patients asking for advice on recovery. Your questions are usually the same: Have you recovered? How did you do it?

It is difficult to give answers for several reasons. First, how many have pointed out, recovery from a prolonged Covid is not a light switch that you can just flip. This is a new virus and it may take years for us to understand the true long-term impacts on those who have contracted it. I experienced debilitating symptoms daily from mid-March to June of last year, during which time the only treatments I followed (other than the initial supplemental oxygen in the hospital) were rest and pacing. In June I began to experience major improvements that allowed me to regain my old way of life. I was able to accept a full-time job, walk and bike around town as needed, and return to a regular exercise schedule. Today I can comfortably work full time and exercise six times a week. The few symptoms I have left are minor and manageable. I firmly believe that this recovery was only possible thanks to my early access to care and three months of intense, sustained and radical rest.

Second: Since I am not a doctor, I do not prescribe treatments for patients, especially since I know first-hand the desperate hope that can arise from believing that something could cure you of your illness. However, I feel confident suggesting rest and pacing as crucial first steps for anyone contracting Covid-19. For those who have just developed long-term symptoms, I think it can make the difference between a quick recovery and a long-term disability.

Finally, I know that while rest and rhythm are the safest, cheapest and most effective treatments to widely prescribe to people with long-term Covid, they are very inaccessible to people who work and / or care for dependent people. The ability to plan long breaks between exertion periods is a privilege that was only available to me because of my Carer and financial support. Many of my friends in the Long Covid community who are still ill were handling full-time work or household responsibilities, such as taking care of children, while I rested and walked.

There is no question that economic inequality plays a role in long Covid recoveries. TO recent study on Covid long found that patients with incomes below $ 75,000 had a 40% higher prevalence of symptoms 30 days after onset, possibly indicating the impact of the ability to rest and walk early in the illness. The effectiveness of rest and pacing make clear the need for greater protection in the workplace and an expansion of disability benefits for people with prolonged Covid. Recovery should not just be an option for those of us with the financial privilege of accessing early care and taking time off from work, but a reality for all who have remained ill after a Covid-19 infection.

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