Marin County Sheriff's Assistant Fred Marziano, 50, strolls through a neighborhood in Petaluma, California on a scooter. Marziano got COVID-19 in March 2020 and the symptoms never went away. He has retired as a sporty man and continues to suffer from shortness of breath, coughing, dizziness, fatigue and other symptoms. Photo: Yalonda M. James / San Francisco Chronicle via Getty Images
Lauren Nichols fell ill with COVID-19 on March 10, 2020 – and like many other people who were infected with SARS-CoV-2, she remained ill for a long time. "When we spoke on the 150th day, she had gastrointestinal problems for the fifth month and severe morning sickness," wrote reporter Ed Yong on The Atlantic. "She still has extreme fatigue, bulging veins, excessive bruising, an irregular heartbeat, loss of short-term memory, gynecological problems, sensitivity to light and sound, and brain fog."
These symptoms are some of the many symptoms people living with the misery of what is known as long COVID experience: fatigue, headaches, insomnia, cognitive difficulties, racing pulse, and palpitations. "Who they are and how many of them remain ill after a SARS-CoV-2 infection is unknown," writes Melissa Healy of the Los Angeles Times. “What drives their bizarre symptoms is still unclear. Your forecasts remain uncertain. And so the answer to the most pressing question is: How can they be helped? "
Long COVID is different from acute COVID-19 infection. In the acute phase of COVID-19, the immune system fights the virus. Symptoms can range from mild to severe to nonexistent. COVID-19 was notable for the number of people who are completely asymptomatic during infection, but these people are not immune to long-term COVID.
With long-term COVID, the acute phase of the disease ends, but debilitating symptoms begin or continue. According to Meghan O’Rourke from the Atlantic, between 10% and 30% of people infected with SARS-CoV-2 suffer from long-term COVID. This area suggests how little is known about postviral syndrome. In the early days of the pandemic, doctors noticed long COVID symptoms and the U.S. Centers for Disease Control and Prevention confirmed the existence of a long COVID in July 2020, Tanya Basu reported in MIT Technology Review. However, the National Institutes of Health (NIH) didn't get funding for research into the syndrome until 2021.
With the development and spread of multiple vaccines, the end of the pandemic is in sight. But a new public health crisis with long-term COVID may just be beginning.
Dr. David Putrino, director of rehabilitation innovation at Mount Sinai's health system in New York City, saw patients who were not getting better last May, he said during the "Covering Coronavirus: The Long Covid Nightmare" panel discussion from the University's Center for Health Journalism of Southern California. When the acute phase of the disease ended, puzzling symptoms continued or reappeared.
“They had persistent symptoms such as shortness of breath, headache and chest pain. And then they developed new symptoms like extreme fatigue, exercise intolerance, cognitive problems, difficulties like short-term memory loss, difficulty concentrating, ”he said. "This is where we began to suspect that what we saw was post-viral syndrome."
Recent research has shown that a staggering number of people who have been infected with SARS-CoV-2 may have long-term COVID. According to a research letter published in February by the Journal of the American Medical Association, "One-third of COVID-19 outpatients reported persistent symptoms."
Gosh, the economic impact of that. You speak of a large number of 20- to 40-year-olds – our workforce – who are now unable to work.
– Dayna McCarthy, rehabilitation
Long COVID affects a wide variety of people, including those who were very fit before they became ill, Healy wrote in the Los Angeles Times. "Athletes and fitness fans who have barely noticed they are sick find that months later they can no longer exercise due to palpitations, crunching fatigue, and muscle weakness."
This month, a study analyzing electronic health records in California found that nearly a third of people struggling with long-term COVID symptoms like shortness of breath, coughing, and abdominal pain did not show any signs for the first 10 days after testing positive had an illness for the coronavirus.
Long-term COVID patients are not the frail elderly who are so sick in the acute phase. Most of them are women, Putrino said to Yong. Their average age is 44 years. This pattern, Healy reported, "has in the past led doctors to dismiss symptoms as manifestations of female anxiety."
Skepticism leads to organization
Routine test results are often back to normal in long-term COVID patients, causing experts to worry that the disease is too easily dismissed. "Everything was negative," said Dayna McCarthy, a rehabilitation physician and senior clinician at the Mount Sinai Center for Post-COVID Care, of the beginnings of the long COVID. "Of course western medicine wants to say that you are fine," she said to O’Rourke.
In the meantime, long-distance riders feel sick to the point of disability, as reported by David Tuller in California Healthline. They formed their own support and research groups and called themselves "long-distance drivers". They found kinship with people suffering from diseases such as dysautonomia and myalgic encephalomyelitis, complex conditions that are similarly debilitating and can be easily dismissed because routine tests cannot confirm them.
Long-distance riders in the US formed a group that eventually found a home on the Slack instant messaging platform. In turn, researchers from the Slack group helped document the existence of the syndrome in May 2020, Basu reported in the MIT Technology Review. In the UK, a group called LongCovidSOS campaigned for their government's recognition, wrote Yong, urging research into her syndrome.
The success of these patient groups is remarkable. The NIH has even developed an official name for the syndrome: post-acute episodes of COVID-19.
Questions with no answers
Despite the official name, little is known about long-term COVID other than that some who get the virus have long-term symptoms, said Steven Deeks, an infectious disease doctor at the University of California in San Francisco. "We know the questions," he said. “We have no answers. Hard stop. "
Congress gave NIH $ 1.15 billion over a four-year period to aid research into the ongoing health consequences of SARS-CoV-2 infection and solve the mysteries of the long-standing COVID. The funding will support research projects that establish a continuum of recovery from COVID-19, quantify how many people have long-term COVID, and attempt to identify biological causes for the syndrome. The money will also help researchers identify chronic diseases caused by SARS-CoV-2 infection, such as: B. heart or brain disorders.
In the meantime, doctors are finding that the lack of basic information makes treating long COVID patients a challenge. "I've never tried to develop a program for a disease that we know so little about," said Dr. Juliet Morgan, neurologist and chief psychiatrist at the UCSF Weill Institute for Neurosciences. Morgan has started a support group for people with long-standing COVID that focuses on relieving symptoms through meditation and other mind-body techniques, including breath work.
Hospitals in 32 states and Washington, DC now have clinics dedicated to treating long-term COVID, Healy reported. Five clinics in the US are focused on long-term pediatric COVID patients, according to CBS News. Like adults, children who are asymptomatic or have mild symptoms can develop long-term COVID later on.
Despite the multitude of symptoms, doctors at the Mount Sinai Center for Post-COVID Treatment found that all patients had one symptom in common: they showed low levels of carbon dioxide. Some of the patients' symptoms improved when they started practicing simple breathing techniques.
There is also hope that vaccines can help people with long-term COVID. One small study found that "those who were vaccinated experienced an improvement in longer COVID symptoms than those who weren't vaccinated."
What happens after the pandemic?
Experts fear that our healthcare system is not designed to deal with the widespread and complicated symptoms of long-term COVID. "The care that long COVID demands is not high-tech, but time-consuming and attention-intensive," wrote O’Rourke. Doctors need to tailor care to patients "in ways that our healthcare system is not designed to do," McCarthy told O'Rourke.
Researchers working with long-term COVID patients are also concerned about underreporting of the syndrome, especially among people of color. For example, Mount Sinai sees mostly white patients with higher incomes, O’Rourke reported. However, the majority of people suffering from long-term COVID are unlikely to be white and wealthy, New York Times health reporter Pam Belluck said during the Long COVID Nightmare panel discussion.
COVID-19 has had "an outsized impact on color communities and urban communities," Belluck said. "It's not that you don't experience or won't experience these symptoms, it's just that our medical system has not yet been able to achieve them."
This is another aspect of Long COVID that has challenged healthcare providers. "I've watched health inequalities arise before my very eyes, and it was worrying and frustrating," said Putrino.
Public health considerations go beyond public health. "Geez, the economic impact of that," McCarthy told O'Rourke. "You speak of a large number of 20- to 40-year-olds – our workforce – who cannot work now."
Nisreen Alwan, a public health professor at the University of Southampton in England who has a long history of COVID, said officials should agree on a definition of recovery beyond hospital discharge or virus testing. The spectrum of recovery that the NIH is trying to establish should also take into account a patient's quality of life. "Death isn't the only thing that matters," Alwan told Yong. "We also have to count changed lives."
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Heather Tirado Gilligan
Heather Tirado Gilligan is a journalist who has written for publications including Slate, The Nation, CNN, and the Washington Post. She was previously the editor-in-chief of the California Health Report, a not-for-profit news agency focusing on health inequalities and access to health care. Heather received a masters degree in journalism from UC Berkeley and a doctorate in English from Rutgers University, where she studied race in American culture.
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