“The common thread through these comments was a basic one. Each of the patients had already been infected with COVID-19 and presumably had recovered, yet each was still dealing with symptoms of the disease – sometimes vague, sometimes nonspecific – that simply would not go away.
– Carolyn Barber, Scientific American
Carolyn Barber – M.D., author, and recipient of CNN’s 2020 “Champions for Change” award – believes that of all the facets of the virus we have dealt with in 2020, what has become known as “long Covid” may ultimately prove the most difficult to recognize, much less to combat.
(Carolyn Barber. “The Problem of ‘Long Haul’ COVID.” Scientific American. December 29, 2020.)
The Centers for Disease Control and Prevention's announced in July that a third of COVID-19 patients continue to display symptoms for months after they test negative. The terms “COVID long-haulers,” “long COVID,” and “Post COVID Syndrome,” have all been used interchangeably in recent months to describe individuals who have been infected with the SARS-CoV-2 and continue to experience symptoms after “recovery.”
Published studies and surveys conducted by patient groups indicate that 50% to 80% of patients continue to have bothersome symptoms three months after the onset of COVID-19 – even after tests no longer detect virus in their body.
(Angelo Carfì et al. “Persistent Symptoms in Patients After Acute COVID-19.” Journal American Medical Association. August 11, 2020.)
(Mark W. Tenforde, MD, PhD et al. “Symptom Duration and Risk Factors for Delayed Return to Usual Health Among Outpatients with COVID-19 in a Multistate Health Care Systems Network.” MMWR Morb Mortal Wkly Rep. July 31, 2020.)
Currently, researchers can’t accurately predict who will become a long hauler. However, continued symptoms are more likely to occur in people over age 50, people with two or three chronic illnesses, and people who became very ill with COVID-19.
King’s College researchers, reviewing their data from the COVID Symptom Study, identified patterns that suggested long COVID was twice as common in women as men, and the median age was 45. And, a non–peer reviewed study of approximately 4,100 people from the same data set found that older people, women, and those with more than five symptoms during their first week of illness were more likely to develop long COVID.
(Daniel Sleat, Ryan Wain, and Brianna Miller. “Long Covid: Reviewing the Science and Assessing the Risk.” Tony Blair Institute For Global Change. October 2020.)
Harvard Health has found long-haulers include two groups of people affected by the virus:
Those who experience some permanent damage to their lungs, heart, kidneys, or brain that may affect their ability to function.
Those who continue to experience debilitating symptoms despite no detectable damage to these organs.
(Anthony Komaroff, MD. “The tragedy of the post-COVID 'long haulers.'” Harvard Health Letter. October 15, 2020.)
A recent survey by the grassroots group COVID-19 “Survivor Corps” found that fatigue was the most common of the top 50 symptoms experienced by the more than 1500 long haulers who responded, followed by muscle or body aches, shortness of breath or difficulty breathing, and difficulty concentrating.
Cough is the most common persistent symptom seen at the new COVID-19 Recovery Clinic (CORE) at Montefiore Medical Center in New York, codirector Aluko Hope, MD, MSCE, said in an interview. Between Hope, a pulmonary and critical care specialist, and the clinic’s other director, general internist Seth Congdon, MD, the clinic sees a wide range of patients, including some who were never hospitalized.
(Rita Rubin, MA. “As Their Numbers Grow, COVID-19 “Long Haulers” Stump Experts.” JAMA. September 23, 2020.)
The Long Haul is the other side of Covid. A significant number of people have still had problems with the disease after months. The long-haulers that could turn out to be a huge public-health problem. In fact, researchers estimate about 10% of COVID-19 patients become long haulers, according to a recent article from The Journal of the American Medical Association and a study done by British scientists.
(Rita Rubin, MA. “As Their Numbers Grow, COVID-19 'Long Haulers' Stump Experts.” JAMA Network. September 23, 2020.)
The Fog That Never Lifts
Ed Yong, British science journalist and a permanent staff member at The Atlantic, says, “No matter the exact diagnosis, the COVID-19 pandemic will almost certainly create a substantial wave of chronically disabled people.”
David Putrino, a neuroscientist and a rehabilitation specialist at Mount Sinai Hospital who has cared for many long-haulers, relates …
“I’ve received hundreds of messages from people who have been suffering for months – alone, unheard, and pummeled by unrelenting and unpredictable symptoms. It’s like every day, you reach your hand into a bucket of symptoms, throw some on the table, and say, ‘This is you for today.'”
(Ed Yong. “Long-Haulers Are Redefining COVID-19.” The Atlantic. August 19, 2020.)
Nisreen Alwan is a public-health professor at the University of Southampton who has had COVID-19 since March 20. She says that experts and officials should stop referring to all nonhospitalized cases as “mild.” They should agree on a definition of recovery that goes beyond being discharged from the hospital or testing negative for the virus, and accounts for a patient’s quality of life. “We cannot fight what we do not measure,” Alwan says. “Death is not the only thing that counts. We must also count lives changed.”
As many people still fantasize about returning to their previous lives, some are already staring at a future where that is no longer possible. Alison Sbrana, who has ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) and dysautonomia (a disorder of the autonomous nervous system), now spends her few productive weekly hours moderating the Body Politic support group. As an advocate for chronic illness and disability, she directs people to credible resources on aspects of disabled life, including care and benefits.
Sbrana says …
“That frontier, in which long-haulers attempt to access social support is about to be a shit show. Some want their employers to make accommodations, such as reduced hours or long-term sick leave, so they can keep working at a time when their medical bills are mounting. Others cannot work, but are pressured to do so by bosses who don’t understand what long COVID is.”
(Ed Yong. “Long-Haulers Are Redefining COVID-19.” The Atlantic. August 19, 2020.)
“We keep seeing that people who don’t have a positive test result struggle to get paid time off work,” says Fiona Lowenstein, who founded Body Politic. Yet others “don’t want people to see them as complainers, push themselves, and then get sicker,” says Barbara Comerford, a New Jersey–based attorney who specializes in disability law and has represented many people with ME/CFS.
Lowenstein adds …
“If they lose their jobs, they’re in really bad shape. Other sources of disability benefits and care, including private insurance and Social Security, are notoriously hard to access. Long-haulers would need to provide a history of being unable to do substantial gainful employment, and ample medical documentation of their disability to prove that it’s expected to last at least a year. Many have neither.”
(Ed Yong. “Long-Haulers Are Redefining COVID-19.” The Atlantic. August 19, 2020.)
The effects of the COVID-19 pandemic are devastating. Mammoth cases of infection and tremendous death tolls tell one side of the horrendous story. Long Covid tells the other, less-reported chapter – the side of the coronavirus that will affect millions of people's health and finances for years to come. As vaccines offering protection now begin to navigate their way into a desperate population, a wake of broken individuals is washing up on the shores, and these long-haulers are in need of immediate attention and care.
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