{"id":15983,"date":"2020-06-05T10:22:19","date_gmt":"2020-06-05T14:22:19","guid":{"rendered":"http:\/\/stateofthenation.co\/?p=15983"},"modified":"2020-06-05T10:26:47","modified_gmt":"2020-06-05T14:26:47","slug":"there-are-specific-reasons-why-coronavirus-syndrome-can-last-for-many-months","status":"publish","type":"post","link":"http:\/\/stateofthenation.co\/?p=15983","title":{"rendered":"There are specific reasons why Coronavirus Syndrome<\/i> can last for many months."},"content":{"rendered":"
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COVID-19 Can Last for Several Months<\/h1>\n

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The disease\u2019s \u201clong-haulers\u201d have endured relentless waves of debilitating symptoms\u2014and disbelief from doctors and friends.<\/h3>\n
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Getty \/ Paul Spella \/ The Atlantic<\/p><\/div>\n<\/div>\n<\/div>\n<\/div>\n

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Story by\u00a0Ed Yong<\/p>\n<\/div>\n<\/div>\n

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Editor\u2019s Note:\u00a0The Atlantic<\/em>\u00a0is making vital coverage of the coronavirus available to all readers. Find the collection\u00a0here<\/a>.<\/p>\n

For vonny leclerc<\/span>, day one was March 16.<\/p>\n

Hours after British Prime Minister Boris Johnson\u00a0instated<\/a>\u00a0stringent social-distancing measures to halt the SARS-CoV-2 coronavirus, LeClerc, a Glasgow-based journalist, arrived home feeling shivery and flushed. Over the next few days, she developed a cough, chest pain, aching joints, and a prickling sensation on her skin. After a week of bed rest, she started improving. But on day 12, every old symptom returned, amplified and with reinforcements: She spiked an intermittent fever, lost her sense of taste and smell, and struggled to breathe.<\/p>\n

When I spoke with LeClerc on day 66, she was still experiencing waves of symptoms. \u201cBefore this, I was a fit, healthy 32-year-old,\u201d she said. \u201cNow I\u2019ve been reduced to not being able to stand up in the shower without feeling fatigued. I\u2019ve tried going to the supermarket and I\u2019m in bed for days afterwards. It\u2019s like nothing I\u2019ve ever experienced before.\u201d Despite her best efforts, LeClerc has not been able to get a test, but \u201cevery doctor I\u2019ve spoken to says there\u2019s no shadow of a doubt that this has been COVID,\u201d she said. Today is day 80.<\/p>\n

COVID-19 has existed for less than six months, and it is easy to forget how little we know about it. The standard view is that a minority of infected people, who are typically elderly or have preexisting health problems, end up in critical care, requiring oxygen or a ventilator. About 80 percent of infections, according to the World Health Organization, \u201care mild or asymptomatic<\/a>,\u201d and patients recover\u00a0after two weeks, on average<\/a>. Yet support groups on\u00a0Slack<\/a>\u00a0and\u00a0Facebook<\/a>\u00a0host thousands of people like LeClerc, who say they have been wrestling with serious COVID-19 symptoms for at least a month, if not two or three. Some call themselves \u201clong-termers\u201d or \u201clong-haulers.\u201d<\/p>\n<\/section>\n

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I interviewed nine of them for this story, all of whom share commonalities. Most have never been admitted to an ICU or gone on a ventilator, so their cases technically count as \u201cmild.\u201d But their lives have nonetheless been flattened by relentless and rolling waves of symptoms that make it hard to concentrate, exercise, or perform simple physical tasks. Most are young. Most were previously fit and healthy. \u201cIt is mild relative to dying in a hospital, but this virus has ruined my life,\u201d LeClerc said. \u201cEven reading a book is challenging and exhausting. What small joys other people are experiencing in lockdown\u2014yoga, bread baking\u2014are beyond the realms of possibility for me.\u201d<\/p>\n

Even though the world is consumed by concern over COVID-19, the long-haulers have been largely left out of the narrative and excluded from the figures that define the pandemic. I can pull up\u00a0an online dashboard<\/a> that reveals the numbers of confirmed cases, hospitalizations, deaths, and recoveries\u2014but LeClerc falls into none of those categories. She and others are trapped in a statistical limbo, uncounted and thus overlooked.<\/p>\n

Some have been diagnosed through tests, while others, like LeClerc, have been told by their doctors that they almost certainly have COVID-19. Still, many long-haulers have faced disbelief from friends and medical professionals because they don\u2019t conform to the typical profile of the disease. People have questioned how they could possibly be so sick for so long, or whether they\u2019re just stressed or anxious. \u201cIt feels like no one understands,\u201d said Chloe Kaplan from Washington, D.C., who works in education and is on day 78. \u201cI don\u2019t think people are aware of the middle ground, where it knocks you off your feet for weeks, and you neither die nor have a mild case.\u201d<\/p>\n<\/section>\n

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The notion that most cases are mild and brief bolsters the belief that only the sick and elderly need isolate themselves, and that everyone else can get infected and be done with it. \u201cIt establishes a framework in which \u2018not hiding\u2019 from the disease looks a manageable and sensible undertaking,\u201d\u00a0writes Felicity Callard<\/a>, a geographer at the University of Glasgow, who is on day 77. As the pandemic discourse turns to talk of a second wave, long-haulers who are still grappling with the consequences of the first wave are frustrated. \u201cI\u2019ve been very concerned by friends and family who just aren\u2019t taking this seriously because they think you\u2019re either asymptomatic or dead,\u201d said Hannah Davis, an artist from New York City, who is on day 71. \u201cThis middle ground has been hellish.\u201d<\/p>\n

It \u201chas been like nothing else on Earth,\u201d said Paul Garner, who has previously endured dengue fever and malaria, and is currently on day 77 of COVID-19. Garner, an infectious-diseases professor at the Liverpool School of Tropical Medicine, leads a renowned organization<\/a>\u00a0that reviews scientific evidence on preventing and treating infections. He tested negative on day 63. He had waited to get a COVID-19 test partly to preserve them for health-care workers, and partly because, at one point, he thought he was going to die. \u201cI knew I had the disease; it couldn\u2019t have been anything else,\u201d he told me. I asked him why he thought his symptoms had persisted. “I honestly don\u2019t know,” he said. “I don\u2019t understand what\u2019s happening in my body.”<\/p>\n<\/section>\n

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On march 17,\u00a0<\/span>a day after LeClerc came down with her first symptoms, SARS-CoV-2\u00a0sent Fiona Lowenstein to the hospital<\/a>. Nine days later, after she was discharged, she started a Slack\u00a0support group<\/a>\u00a0for people struggling with the disease. The group, which is affiliated with a wellness organization founded by Lowenstein called Body Politic, has been a haven for long-haulers. One channel for people whose symptoms have lasted longer than 30 days has more than 3,700 members.<\/p>\n

\u201cThe group was a savior for me,\u201d said Gina Assaf, a design consultant in Washington, D.C., who is now on day 77. She and other members with expertise in research and survey design have now sampled 640 people from the Body Politic group and beyond.\u00a0Their report<\/a> is neither representative nor peer-reviewed, but it provides a valuable snapshot of the long-hauler experience.<\/p>\n

Of those surveyed, about three in five are between the ages of 30 and 49. About 56 percent have not been hospitalized, while another 38 percent have visited the ER but were not admitted. About a quarter have tested positive for COVID-19 and almost half have never been tested at all. Some became sick in mid-March, when their home countries were severely short on tests. (Most survey respondents live in the U.S. and the U.K.) Others were denied testing because their symptoms didn\u2019t match the standard set. Angela Meriquez V\u00e1zquez, a children\u2019s activist in Los Angeles, had gastrointestinal problems and lost her sense of smell, but because she didn\u2019t have a cough and her fever hadn\u2019t topped 100 degrees Fahrenheit, she didn\u2019t meet L.A.\u2019s testing criteria. By the time those criteria were loosened, V\u00e1zquez was on day 14. She got a test, and it came back negative. (She is now on day 69.)<\/p>\n<\/section>\n

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A quarter of respondents in the Body Politic survey have tested negative, but that doesn\u2019t mean they don\u2019t have COVID-19. Diagnostic tests for SARS-CoV-2 miss infections up to\u00a030 percent<\/a>\u00a0of the time, and these false negatives\u00a0become more likely<\/a> a week after a patient\u2019s first symptoms appear. In the Body Politic survey, respondents with negative test results were tested a week after those with positive ones, on average, but the groups did not differ in their incidence of 60 different symptoms over time. Those matching patterns strongly suggest that those with negative tests are indeed dealing with the same disease. They also suggest that the true scope of the pandemic has been underestimated, not just because of the widespread lack of testing but because many people who are getting tested are receiving false negatives.<\/p>\n<\/section>\n

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COVID-19\u00a0affects many different organs<\/a>\u2014that much is now clear. But in March, when many long-haulers were first falling sick with gut, heart, and brain problems, the disease was still regarded as a mainly respiratory one. To date, the only neurological symptom that the Centers for Disease Control and Prevention lists\u00a0in its COVID-19 description<\/a>\u00a0is a loss of taste or smell. But other neurological symptoms are common among the long-haulers who answered the Body Politic survey.<\/p>\n

As many people reported \u201cbrain fogs\u201d and concentration challenges as coughs or fevers. Some have experienced hallucinations, delirium, short-term memory loss, or strange vibrating sensations when they touch surfaces. Others are likely having problems with their sympathetic nervous system, which controls unconscious processes like heartbeats and breathing: They\u2019ll be out of breath even when their oxygen level is normal, or experience what feel like heart attacks even though EKG readings and chest X-rays are clear. These symptoms wax, wane, and warp over time. \u201cIt really is a grab bag,\u201d said Davis, who is a co-author of the Body Politic survey. \u201cEvery day you wake up and you might have a different symptom.\u201d<\/p>\n

It\u2019s not clear why this happens. Akiko Iwasaki, an immunologist at Yale, offers three possibilities. Long-haulers might still harbor infectious virus in some reservoir organ, which is missed by tests that use nasal swabs. Or persistent fragments of viral genes, though not infectious, may still be triggering a violent immune overreaction, as if \u201cyou\u2019re reacting to a ghost of a virus,\u201d Iwasaki says. More likely, the virus is gone but the immune system, having been provoked by it, is stuck in a lingering overactive state.<\/p>\n

It\u2019s hard to distinguish between these hypotheses, because SARS-CoV-2 is new and because the aftermath of viral infections is poorly understood. Many diseases cause long-lasting symptoms, but these might go unnoticed as trends unless epidemics are especially large. \u201cNearly every single person with Ebola has some long-term chronic complication, from subtle to obviously debilitating,\u201d says Craig Spencer of the Columbia University Medical Center, who caught the virus himself in 2014. Some of those persistent problems had been noted during early Ebola outbreaks, but weren\u2019t widely appreciated until 28,600 people were infected in West Africa from 2013 to 2016.<\/p>\n<\/section>\n

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The sheer scale of the COVID-19 pandemic, which reached more than 6 million confirmed cases worldwide in a matter of months, means that long-haulers are now finding one another in sufficient numbers to shape their own narrative.<\/p>\n

As the pandemic\u00a0<\/span>continues, long-haulers are navigating a landscape of uncertainty and fear with a map whose landmarks don\u2019t reflect their surroundings. If your symptoms last for longer than two weeks, for how long should you expect to be sick? If they differ from the official list, how do you know which ones are important? \u201cI\u2019m acutely aware of my body at all times of the day,\u201d LeClerc told me. \u201cIt shrinks your entire world to an almost reptilian response to your surroundings.\u201d<\/p>\n

If you\u2019re still symptomatic, could you conceivably infect someone else if you leave your home? Garner, the infectious disease expert, is confident that this far out, he\u2019s not shedding live virus anymore. But Meg Hamilton, who is a nursing student in Odenton, Maryland\u2014and, full disclosure, my sister-in-law\u2014said that her local health department considered her to be contagious as long as she had a fever; she is on day 56, and has only had a few normal temperature readings. Davis said that she and her partner, who live in different apartments, talked through the risks and decided to reunite on day 59. Until then, she had been dealing with two months of COVID-19 alone.<\/p>\n<\/section>\n

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The isolation of the pandemic has been hard enough for many healthy people. But it has exacerbated the foggy minds, intense fatigue, and perpetual fear of erratic symptoms that long-haulers are also dealing with. \u201cIt plays with your head, man,\u201d Garner said. Some feel guilt over being incapacitated even though their cases are \u201cmild.\u201d Some start doubting or blaming themselves. In her fourth week of fever, Hamilton began obsessively worrying that she had been using her thermometer incorrectly. \u201cI also felt like I wasn\u2019t being mentally strong enough, and by allowing myself to say that I don\u2019t feel good, I was prolonging the fever,\u201d she said.<\/p>\n

Then there\u2019s the matter of who to tell\u2014and when. At first, Hamilton kept the news from her parents. She didn\u2019t want them to worry, and she assumed she\u2019d be better in two weeks. But as two weeks became three, then four, then five, the omission started feeling like an outright lie. Her concern that they would be worried morphed into concern that they would be mad. (She finally told them last week; they took it well.)<\/p>\n

Other long-haulers have been frustrated by their friends\u2019 and families\u2019 inability to process a prolonged illness. \u201cPeople know how to react to you having it or to you getting better,\u201d LeClerc said. But when symptoms are rolling instead of abating, \u201cpeople don\u2019t have a response they can reach for.\u201d They ask if she\u2019s improving, in expectation that the answer is yes. When the answer is instead a list of ever-changing symptoms, they stop asking.\u00a0Others pivot to disbelief<\/a>. \u201cI\u2019ve had messages saying this is all in your head, or it\u2019s anxiety,\u201d LeClerc said.<\/p>\n<\/section>\n

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Many such messages come from doctors and nurses. Davis described her memory loss and brain fog to a neurologist, who told her she had ADHD. \u201cYou feel really scared: These are people you\u2019re trying to get serious help from, and they don\u2019t even understand your reality,\u201d she said. V\u00e1zquez said her physicians repeatedly told her she was just having panic attacks\u2014but she knows herself well enough to discount that. \u201cMy anxiety is thought-based,\u201d but with COVID-19, \u201cthe physical symptoms happen first,\u201d she said.<\/p>\n

Athena Akrami, a neuroscience professor at University College London, said two doctors suggested that she was stressed, while a fellow neuroscientist told her to calm down and take antidepressants. \u201cI\u2019m a very calm person, and something is wrong in my body,\u201d said Akrami, who is now on day 79, and is also a co-author on the Body Politic survey. \u201cAs a scientist, I understand there are so many unknowns about the virus, but as a patient, I need acknowledgment.\u201d Every day, Akrami said, \u201cis like being in a tunnel.\u201d<\/p>\n

To be sure, many health-care workers are also exhausted, having spent several months fighting a new disease that they barely understand, without enough masks and other protective supplies. But well before the pandemic, the health-care profession had a long history of\u00a0medical gaslighting<\/a>\u2014downplaying a patient\u2019s physical suffering as being all in their head, or caused by stress or anxiety. Such dismissals particularly affect women, who are \u201cless likely to be perceived as credible witnesses to our own experiences,\u201d said LeClerc. And they\u2019re especially common when women have subjective symptoms like pain or fatigue, as most long-haulers do. When Garner\u00a0wrote about those same symptoms<\/a>\u00a0for the\u00a0British Medical Journal<\/em>\u2019s blog, \u201cI had an unbelievable feeling of relief,\u201d Callard, the geographer, told me. \u201cSince he\u2019s a guy and a professor of infectious disease, he has the kind of epistemic authority that will be harder to discount.\u201d<\/p>\n<\/section>\n

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Garner\u2019s descriptions of his illness are similar to those of many long-haulers who have been taken less seriously. \u201cIt wasn\u2019t like he wrote those posts in some arcane language that\u2019s steeped in authority,\u201d said Sarah Ramey, a musician and author in Washington, D.C. \u201cIf you took his words, put my name on them, and put them up on Medium, people would say, \u2018Ugh, who is this person and what is she talking about?\u2019\u201d<\/p>\n

Ramey can empathize\u00a0<\/span>with long-haulers. In her memoir,\u00a0The Lady\u2019s Handbook for Her Mysterious Illness<\/em>, she writes about her 17-year ordeal of excruciating pain, crushing fatigue, gastro-catastrophes, and medical gaslighting. \u201cBeing isolated and homebound, incredible economic insecurity, the government not doing enough, testing not being up to snuff\u2014all of that is the lived experience of someone like me for decades,\u201d she says. \u201cThe illness itself is horrible and ravaging, but being told you\u2019ve made it up, over and over again, is by far the worst of it.\u201d<\/p>\n

Formally, Ramey has\u00a0myalgic encephalomyelitis\/chronic fatigue syndrome<\/a>\u00a0(ME\/CFS) and\u00a0complex regional pain syndrome<\/a>. Informally, she\u2019s part of a group she has dubbed WOMIs\u2014women with mysterious illnesses. Such conditions include ME\/CFS, fibromyalgia, and postural orthostatic tachycardia syndrome. They disproportionately affect women; have unclear causes, complex but debilitating symptoms, and no treatments; and are hard to diagnose and easy to dismiss.\u00a0According to the Institute of Medicine<\/a>, 836,000 to 2.5 million people in the U.S. alone have ME\/CFS. Between 84 and 91 percent are undiagnosed.<\/p>\n

That clusters of ME\/CFS have followed many infectious outbreaks<\/a>\u00a0is noteworthy. In such events, some people get better quickly, others are sick for longer with\u00a0postviral fatigue<\/a>, and still others are suffering months or years later.\u00a0In one Australian study<\/a>, 11 percent of people infected with Ross River virus, Epstein-Barr virus, or the bacterium behind Q fever were diagnosed with ME\/CFS after six months. In a study of 233 Hong Kong residents who\u00a0survived the SARS epidemic of 2003<\/a>, about 40 percent had chronic-fatigue problems after three years or so, and 27 percent met the CDC\u2019s criteria for ME\/CFS. Many different acute pathogens seem to trigger the same inflammatory responses that culminate in the same chronic endgame. Many individuals in this community are worried about COVID-19, according to Ramey: \u201cYou\u2019ve got this highly infectious virus sweeping around the world, and it would be unusual if you didn\u2019t see a big uptick in ME\/CFS cases.\u201d<\/p>\n<\/section>\n

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ME\/CFS is typically diagnosed when symptoms persist for six months or more, and the new coronavirus has barely been infecting humans for that long. Still, many of the long-haulers\u2019 symptoms \u201csound exactly like those that patients in our community experience,\u201d says Jennifer Brea, the executive director of the advocacy group #MEAction.<\/p>\n

LeClerc, Akrami, and others have noted that their symptoms reappear when they try to regain a measure of agency by cleaning, working out, or even doing yoga. This is post-exertional malaise\u2014the defining feature of ME\/CFS. It\u2019s a severe multi-organ crash that follows activity as light as a short walk. It\u2019s also distinct from mere exhaustion: You can\u2019t just push through it, and you\u2019ll feel much worse if you try. The ME\/CFS community has\u00a0learned<\/a>\u00a0that resting as much as possible in the early months of postviral fatigue is crucial. Garner learned that lesson the hard way. After writing that \u201cmy disease has lifted<\/a>,\u201d he did a high-intensity workout, and\u00a0was bedridden for three days<\/a>. He is now reading literature about ME\/CFS and listening to his sister, who has had the disease. \u201cWe have much to learn from that community,\u201d he says.<\/p>\n

The symptoms of ME\/CFS have long been trivialized; its patients disbelieved; its researchers underfunded<\/a>. The condition is especially underdiagnosed\u00a0among black and brown communities<\/a>, who are also disproportionately likely to be infected and killed by COVID-19. If the pandemic creates a large population of people who have symptoms that are similar to those of ME\/CFS, it might trigger research into this and other overlooked diseases.\u00a0Several teams of scientists<\/a>\u00a0are already planning\u00a0studies of COVID-19 patients<\/a>\u00a0to see if any become ME\/CFS patients\u2014and why. Brea says she would welcome such a development. But she also feels \u201ca lot of grief for people who may have to walk that path, [and] grief for the time we could have spent over the last four decades researching this so we\u2019d have a better understanding of how to treat patients now.\u201d<\/p>\n<\/section>\n

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Some long-haulers will get better. The Body Politic Slack support group has a victories channel, where people post about promising moments on the road to recovery. Such stories were scarce last month, but more have appeared in the past weeks. The celebrations are always tentative, though. Good days are intermingled with terrible ones. \u201cIt\u2019s a reverse-circling of the drain,\u201d V\u00e1zquez said. \u201cIt has gotten better, but I track that trajectory in weeks, not days.\u201d The COVID-19\u00a0dashboard<\/a> from Johns Hopkins shows that about 2.7 million people around the world have \u201crecovered\u201d from the disease. But recovery is not a simple matter of flipping a switch. For some, it will take more time than the entire duration of the pandemic thus far.<\/p>\n

Some survivors will have scar tissue<\/a>\u00a0from the coronavirus\u2019s assault on their lungs. Some will still be weak after lengthy stays in ICUs or on ventilators. Some will eventually be diagnosed with ME\/CFS. Whatever the case, as the pandemic progresses, the number of people with medium-to-long-term disabilities will increase. \u201cSome science fiction\u2014and more than a few tech bros\u2014have led us to believe in a nondisabled future,\u201d says Ashley Shew of Virginia Tech, who studies the intersection between technology and disability. \u201cBut whether through environmental catastrophe, or new viruses, we can expect more, exacerbated, and new disabilities.\u201d<\/p>\n<\/section>\n

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In the early 1950s, polio permanently disabled\u00a0tens of thousands of people<\/a>\u00a0in the U.S. every year, most of whom were children or teenagers who \u201csaw their futures as able and healthy,\u201d Shew says. In the \u201960s and \u201970s, those survivors became pioneers of the disability-rights movement in the U.S.<\/p>\n

Perhaps COVID-19 will similarly galvanize an even larger survivor cohort. Perhaps, collectively, they can push for a better understanding of neglected chronic diseases, and an acceptance of truths that the existing disability community have long known. That health and sickness are not binary. That medicine is as much about listening to patients\u2019 subjective experiences as it is about analyzing their organs. That being a survivor is something you must also survive.<\/p>\n

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\nhttps:\/\/www.theatlantic.com\/health\/archive\/2020\/06\/covid-19-coronavirus-longterm-symptoms-months\/612679\/<\/a><\/p>\n<\/section>\n","protected":false},"excerpt":{"rendered":"

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