|Msg 163409 of 164180 at 9/26/2020 3:30:29 AM by
OT: long-haulers --- another reason to quit screwing around (Trump-style) with Covid
As Their Numbers Grow, COVID-19 "Long Haulers" Stump Experts
Sept 23, 2020
For 32-year-old Hanna Lockman of Louisville, Kentucky, it all started March 12. She was at work when she suddenly felt a stabbing pain in her chest.
"It just got worse and worse and worse, to the point I was crying from the pain," she recalled in a recent interview. At 3 am, the pain sent her to the emergency department. "I had developed a dry cough, maybe a mild fever. I don't remember."
Five months, 16 emergency department trips, and 3 short hospitalizations later, Lockman can't remember a lot of things. She places the blame squarely on coronavirus disease 2019 (COVID-19).
"I joke, 'Well, COVID has eaten my brain, because I can't remember how to remember words, keep track of medication,' " she said. "My brain just feels like there's a fog."
Lockman considers herself to be a "long hauler," someone who still hasn't fully recovered from COVID-19 weeks or even months after symptoms first arose. She serves as an administrator of 2 "Long Haul COVID Fighters" Facebook groups, whose members now number more than 8000.
The longer the pandemic drags on, the more obvious it becomes that for some patients, COVID-19 is like the unwelcome houseguest who won't pack up and leave.
"Anecdotally, there's no question that there are a considerable number of individuals who have a postviral syndrome that really, in many respects, can incapacitate them for weeks and weeks following so-called recovery and clearing of the virus," Anthony Fauci, MD, director of the National Institute of Allergy and Infectious Diseases, said in July during a COVID-19 webinar organized by the International AIDS Society.
That appeared to be the case with the first severe acute respiratory syndrome (SARS), which emerged in 2002 and was also caused by a coronavirus. Some people who were hospitalized with SARS still had impaired lung function 2 years after their symptoms began, according to a prospective study of 55 patients in Hong Kong. But only 8096 people were diagnosed with SARS worldwide---a fraction of the COVID-19 cases reported each day in the US alone.
In a recent JAMA research letter, 125 of 143 Italian patients ranging in age from 19 to 84 years still experienced physician-confirmed COVID-19--related symptoms an average of 2 months after their first symptom emerged. All had been hospitalized, with their stays averaging about 2 weeks; 80% hadn't received any form of ventilation.
Physicians at a Paris hospital recently reported that they saw an average of 30 long haulers every week between mid-May, when the COVID-19 lockdown ended in France, and late July. The patients' average age was around 40 years, and women outnumbered men 4 to 1.
As with SARS, many COVID-19 long haulers are health care workers who had massive exposure to the virus early in the pandemic, neuroimmunologist Avindra Nath, MD, of the National Institute of Neurological Disorders and Stroke (NINDS), noted in a recent editorial.
Overall, approximately 10% of people who've had COVID-19 experience prolonged symptoms, a UK team estimated in a recently published Practice Pointer on postacute COVID-19 management. And yet, the authors wrote, primary care physicians have little evidence to guide their care.
Adults with severe illness who spend weeks in intensive care, often intubated, can experience long-lasting symptoms, but that's not unique to patients with COVID-19. What's unusual about the long haulers is that many initially had mild to moderate symptoms that didn't require lengthy hospitalization---if any---let alone intensive care.
"Most of the patients that I see who are suffering from [post--COVID-19] syndrome were not hospitalized," Jessica Dine, MD, a pulmonary specialist at the University of Pennsylvania Perelman School of Medicine, said in an interview. "They were pretty sick, but still at home."
Why some previously healthy, often young, adults still haven't recovered from the disease has stymied physicians.
"We in the medical field are very accustomed to taking care of respiratory syncytial virus and other pneumoviruses in young adults," Wesley Self, MD, MPH, an emergency medicine physician at Vanderbilt University Medical Center, said in an interview. With those infections, "people feel pretty sick for 2 to 3 days, and then they feel markedly better."
But COVID-19 is another matter, Self and his coauthors found in a recent study of 292 individuals with the disease who did not require hospitalization. "One of the goals of this particular study was to understand those with mild symptoms," Self said. "This was an understudied group."
More than a third of them hadn't returned to their usual state of health 2 to 3 weeks after testing positive, the researchers wrote in the Morbidity and Mortality Weekly Report. The older the patients, the more likely they were to say they their pre--COVID-19 health hadn't come back. But even a quarter of the youngest, those aged 18 to 34 years, said they had not yet regained their health.
"That certainly was a surprise to us," Self's coauthor and Vanderbilt colleague William Stubblefield, MD, an emergency medicine specialist, said in an interview.
Self and others say they suspect that severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection triggers long-lasting changes in the immune system. In some organs, especially the lungs, those changes persist far past the point at which patients have stopped shedding the virus, Self said. "Frankly, we don't know how long that lasts." To help answer that question, Self and his coauthors are conducting a follow-up study to assess outpatients' health 6 months after their COVID-19 diagnosis.
Long-Haulers Are Redefining COVID-19
Without understanding the lingering illness that some patients experience, we can't understand the pandemic.
August 19, 2020
Lauren Nichols has been sick with COVID-19 since March 10, shortly before Tom Hanks announced his diagnosis and the NBA temporarily canceled its season. She has lived through one month of hand tremors, three of fever, and four of night sweats. When we spoke on day 150, she was on her fifth month of gastrointestinal problems and severe morning nausea. She still has extreme fatigue, bulging veins, excessive bruising, an erratic heartbeat, short-term memory loss, gynecological problems, sensitivity to light and sounds, and brain fog. Even writing an email can be hard, she told me, "because the words I think I'm writing are not the words coming out." She wakes up gasping for air twice a month. It still hurts to inhale.
Tens of thousands of people, collectively known as "long-haulers," have similar stories. I first wrote about them in early June. Since then, 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,'" says David Putrino, a neuroscientist and a rehabilitation specialist at Mount Sinai Hospital who has cared for many long-haulers.
Of the long-haulers Putrino has surveyed, most are women. Their average age is 44. Most were formerly fit and healthy. They look very different from the typical portrait of a COVID-19 patient---an elderly person with preexisting health problems. "It's scary because in the states that are surging, we have all these young people going out thinking they're invincible, and this could easily knock them out for months," Putrino told me. And for some, months of illness could turn into years of disability.
Our understanding of COVID-19 has accreted around the idea that it kills a few and is "mild" for the rest. That caricature was sketched before the new coronavirus even had a name; instead of shifting in the light of fresh data, it calcified. It affected the questions scientists sought to ask, the stories journalists sought to tell, and the patients doctors sought to treat. It excluded long-haulers from help and answers. Nichols's initial symptoms were so unlike the official description of COVID-19 that her first doctor told her she had acid reflux and refused to get her tested. "Even if you did have COVID-19, you're 32, you're healthy, and you're not going to die," she remembers him saying. (She has since tested positive.)
Long-haulers had to set up their own support groups. They had to start running their own research projects. They formed alliances with people who have similar illnesses, such as dysautonomia and myalgic encephalomyelitis, also known as chronic fatigue syndrome. A British group---LongCovidSOS---launched a campaign to push the government for recognition, research, and support.
All of this effort started to have an effect. More journalists wrote stories about them. Some doctors began taking their illness seriously. Some researchers are developing treatment and rehabilitation programs. Representative Jamie Raskin of Maryland introduced a bill that would allow the National Institutes of Health to fund and coordinate more research into chronic illnesses that follow viral infections.
It's not enough, argues Nisreen Alwan, 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."
Only then will we truly know the full stakes of the pandemic. As many people still fantasize about returning to their previous lives, some are already staring at a future where that is no longer possible.
A few formal studies have hinted at the lingering damage that COVID-19 can inflict. In an Italian study, 87 percent of hospitalized patients still had symptoms after two months; a British study found similar trends. A German study that included many patients who recovered at home found that 78 percent had heart abnormalities after two or three months. A team from the Centers for Disease Control and Prevention found that a third of 270 nonhospitalized patients hadn't returned to their usual state of health after two weeks. (For comparison, roughly 90 percent of people who get the flu recover within that time frame.)
These findings, though limited, are galling. They suggest that in the United States alone, which has more than 5 million confirmed COVID-19 cases, there are probably hundreds of thousands of long-haulers.
These people are still paying the price for early pandemic failures. Many long-haulers couldn't get tested when they first fell sick, because such tests were scarce. Others were denied tests because their symptoms didn't conform to a list we now know was incomplete. False negatives are more common as time wears on; when many long-haulers finally got tested weeks or months into their illness, the results were negative. On average, long-haulers who tested negative experienced the same set of symptoms as those who tested positive, which suggests that they truly do have COVID-19. But their negative result still hangs over them, shutting them out of research and treatments.
Several studies have found that most COVID-19 patients produce antibodies that recognize the new coronavirus, and that these molecules endure for months. Their presence should confirm whether a long-hauler was indeed infected. But there's a catch: Most existing antibody studies focused on either hospitalized patients or those with mild symptoms and swift recoveries. By contrast, Putrino told me that in his survey of 1,400 long-haulers, two-thirds of those who have had antibody tests got negative results, even though their symptoms were consistent with COVID-19. Nichols, for example, tested negative for antibodies after twice testing positive for the coronavirus itself. "Just because you're negative for antibodies doesn't mean you didn't have COVID-19," Putrino said.
Organizations and governments have been slow to recognize what long-haulers call "long COVID." In July, the U.K. allocated $11 million (£8.4 million) for research into the long-term consequences of COVID-19, but "to be eligible, you have to have been admitted into hospital," says Trisha Greenhalgh, a primary-health-care professor at the University of Oxford. "That makes no sense." Meanwhile, the CDC's website still does not mention this phenomenon, and its list of symptoms barely reflects the full range of neurological problems. As late as June 25, the agency's deputy director for infectious diseases said "we don't yet know" whether COVID-19 "could persist for more than a few months." By then, thousands of long-haulers already did know, and had been talking about it.