Long COVID Gains Acceptance as Many Questions Remain Unanswered
By Susan Carr | Senior Writer, ImproveDx
…covid-19 has brought the complexity of science and policy making in the context
of uncertainty into sharp focus.1(1) — Harry Rutter, Miranda Wolpert, Trisha Greenhalgh
The past year has been an exercise in humility. For all that was quickly learned about the new SARS-CoV-2 virus and COVID-19, there have been constant reminders of what is not yet known, including the infection’s long-term implications.
In March and April 2020, most COVID-19 patients who managed their symptoms at home and recovered considered themselves fortunate and looked forward to returning to normal in a few weeks, as if they had had the flu or a bad cold. But as April became May, June and beyond, some patients were not able to shake symptoms that came and went like an unpredictable tide. Many drew on past experience and assumed they could tough out the tail end of the illness. Some found that friends, family members and even doctors they consulted for advice attributed their ongoing symptoms to stress, nerves, lack of resolve or a different, underlying condition. It was only when these patients turned to social media for peer support, discovered a growing community of “long haulers,” and started collecting data that the media and medical establishment began to pay attention and realize that for some, COVID is a long-term, perhaps chronic, debilitating illness.2-5
Because terminology and definitions are still being developed and data is scarce, the percentage of patients with persistent or chronic symptoms is not yet known.
One of the first studies to measure ongoing symptoms was performed in Italy from late April to late May 2020. It found that 87.4% of patients “reported persistence of at least 1 symptom, particularly fatigue and dyspnea.6 The 143 patients included in the study had been hospitalized, discharged, and then tested negative for COVID-19. All were receiving care in a post-acute outpatient service and were surveyed approximately 60 days following the onset of symptoms and 36 days since discharge.6
Symptoms of Long COVID
The Centers for Disease Control and Prevention identify the following as symptoms associated with long COVID:
The most commonly reported long-term symptoms include:
- Shortness of breath
- Joint pain
- Chest pain
Other reported long-term symptoms include:
- Difficulty with thinking and concentration (sometimes referred to as “brain fog”)
- Muscle pain
- Intermittent fever
- Fast-beating or pounding heart (also known as heart palpitations)
More serious long-term complications appear to be less common but have been reported. These have been noted to affect different organ systems in the body. These include:
- Cardiovascular: inflammation of the heart muscle
- Respiratory: lung function abnormalities
- Renal: acute kidney injury
- Dermatologic: rash, hair loss
- Neurological: smell and taste problems, sleep issues, difficulty with concentration, memory problems
- Psychiatric: depression, anxiety, changes in mood12
Other groups and researchers have also developed lists of symptoms associated with long COVID. For one example, see the COVID-19 “Long Hauler” Symptoms Survey Report.13
And in the United Kingdom, guidelines published by the National Institute for Health Care Excellence14 list symptoms for ongoing symptomatic COVID-19 and post-COVID-19 syndrome.
In the United States, the Centers for Disease Control and Prevention’s Morbidity and Mortality Weekly Report reported data collected on 274 symptomatic patients through phone interviews performed between April 15 and June 25, 2020.7 Although 7% had brief hospital stays for COVID-19, all had been tested as outpatients and managed the illness through self-care at home. Approximately one-third reported they had not yet returned to “normal health” 2 to 3 weeks after testing positive. The study points out in contrast that 90% of patients with influenza recover to normal health in 2 weeks. The authors recommend further study and observe that COVID is a prolonged illness for many patients, not just the elderly or those in poor health:
Notably, convalescence can be prolonged even in young adults without chronic medical conditions, potentially leading to prolonged absence from work, studies, or other activities.7(pp996-997)
Another study of COVID outpatients comes from the Faroe Islands, an archipelago in the North Atlantic, roughly halfway between Norway and Iceland. The islands have a population of fewer than 53,000 people. Between March 3 and April 22, 2020, all patients who tested positive for COVID-19, including children, were invited to participate in a study designed to assess persistence of symptoms.8 Out of 187 eligible patients, 180 participated, and only eight had been hospitalized. After 125 days, 53.1% reported they continued to experience at least one symptom. Although there was a correlation of increased age with symptom persistence, the authors did not find significant demographic trends and concluded that “…it might take months for symptoms to resolve, even among non-hospitalized persons with milder illness course in the acute phase.”8(np)
Studies like these don’t represent the large population of COVID patients who lack a positive test result either through inadequate or inaccurate testing. Patients who experience long COVID and don’t have a positive diagnosis of COVID-19 face many uncertainties. Lacking the objective confirmation of a diagnostic test may cast doubt on the validity or origin of symptoms and make it harder for patients to find appropriate treatment. Adding to the uncertainty, long COVID often features debilitating symptoms that fluctuate, with alternating “good” and “bad” days. For many, having had relatively mild symptoms at the outset also means their ongoing health problems seem inconsistent with the commonly held belief that mild symptoms should equate with ease of recovery.
Early reports that the effects of COVID-19 could be long-lasting initially came from patients and the networks they formed on Facebook and other social media platforms. One group, Patient-Led Research, published its first report in May, which was heralded by Francis Collins, MD, PhD, director of the National Institutes of Health as “the first detailed patient survey of post-COVID syndrome.”9(np) Based on an online survey, the report includes responses from 640 patients, roughly 50% of whom were never tested for COVID-19. Among those who had been tested, only 23% tested positive. The authors believe that including only patients who have tested positive would not accurately reflect the nature and incidence of COVID-19 and would do “a disservice to the thousands, if not hundreds of thousands, of people with prolonged symptoms who were unable to access a test early enough in their illness, if at all.”10(np)
Nisreen Alwan, an associate professor and consultant in public health in the United Kingdom who experienced intermittent, serious COVID symptoms for months, agrees that testing is a poor measure of long COVID. She recommends using a set of agreed-upon symptoms as “universal and simple criteria” for the incidence of infection as well as recovery. She calls for gathering data on cases regardless of severity and reconsidering the terminology used:
The “recovery” definition must include duration, severity and fluctuation of symptoms, as well as functionality and quality of life. Everyone who is symptomatic would remain a “case” until they fulfilled the recovery criteria or died.11(p170)
Diagnosis and Treatment of Long COVID
The symptoms of long COVID are numerous, diverse and may indicate other conditions. Physicians, scientists, and patients have noted, for example, that some long COVID patients meet the CDC’s criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Ed Yong, staff writer for The Atlantic, reports that some have mixed feelings about correlating their condition with ME/CFS, resisting the prospect of chronic disability and hesitating to associate themselves with a community of patients who have long been trivialized and discounted.15 On the other hand, some long COVID patients desperately want a more specific diagnosis for their condition and welcome the CFS/ME label, “treating any diagnosis as more of an anchor than an answer: It’s a starting point for understanding what’s happening to them.”15(np) It appears that the ME/CFS community may benefit from what is learned through research focused on long COVID and that COVID patients may benefit from what the ME/CFS community has learned about managing their disease and its impact on their daily lives.15,16
David Putrino, PhD, director of rehabilitation innovation for Mt. Sinai Health System in New York, reported during a Survivor Corps webinar17 that Mt. Sinai’s Center for Post-Covid Care avoids putting a name on the syndrome. After making a “presumptive positive diagnosis based on symptoms,” the Center concentrates on patient-centric treatment. Putrino explains that a COVID patient’s symptoms may fall into a number of different buckets, including dysautonomia and ME/CFS, but he feels it is too early to know what is causing symptoms to persist and to understand the likely prognosis for individual patients.
Long COVID patients dealing with fluctuating and disparate symptoms are likely to need help from a variety of medical professionals and benefit from a collaborative approach to care.18 The Center at Mt. Sinai is part of a growing network of post-COVID care centers in the United States, which are listed by state on an interactive webpage hosted by Survivor Corps, one of the largest online communities and data-gathering groups focused on long COVID. Last October, England’s National Health Service established funding for a network of more than 60 multi-specialty clinics for long-COVID care throughout the country.
Trish Greenhalgh, a practicing physician in the UK and professor of primary healthcare at the University of Oxford, points out that long COVID patients will most often turn to their general practitioners for help. Acknowledging that COVID-19 presents “a very, very uncertain, highly variable clinical picture,”2 Greenhalgh hopes that physicians will share honestly with long COVID patients the fact that “we actually don’t know how long this is going to last.”2 In a Practice Pointer for The BMJ, Greenhalgh et al. observe:
In these uncertain times, one key role that the primary care practitioner can play is that of witness, “honouring the story” of the patient whose protracted recovery was unexpected, alarming, and does not make sense.19(6-7)
Long COVID, the effects of which will challenge health systems, employers, and thousands of patients for years to come, presents an urgent need for patients, clinicians, researchers, policy makers and more to work together. Unfortunate missteps in the early reaction to long COVID have largely been corrected, thanks to the efforts of engaged patients. Going forward, honesty, compassion and collaboration should point the way to understanding and management.
Thank you to our reviewers: Jeannine Cyr Gluck, MLS; Mark L. Graber, MD; Lorri Zipperer, MA.