Cartoon – State of the Union on Retirement
Category Archives: Mortality
Children might play a bigger role in COVID transmission than first thought. Schools must prepare
Over the weekend, the World Health Organisation made an announcement you might have missed.
It recommended children aged 12 years and older should wear masks, and that masks should be considered for those aged 6-11 years. The German Society for Virology went further, recommending masks be worn by all children attending school.
This seems at odds with what we assumed about kids and COVID-19 at the start of the pandemic. Indeed, one positive in this pandemic so far has been that children who contract the virus typically experience mild illness. Most children don’t require hospitalisation and very few die from the disease. However, some children can develop a severe inflammatory syndrome similar to Kawasaki disease, although this is thankfully rare.
This generally mild picture has contributed to cases in children being overlooked. But emerging evidence suggests children might play a bigger role in transmission than originally thought. They may be equally as infectious as adults based on the amount of viral genetic material found in swabs, and we have seen large school clusters emerge in Australia and around the world.
How likely are children to be infected?
Working out how susceptible children are has been difficult. Pre-emptive school closures occurred in many countries, removing opportunities for the virus to circulate in younger age groups. Children have also missed out on testing because they typically have mild symptoms. In Australia, testing criteria were initially very restrictive. People had to have a fever or a cough to be tested, which children don’t always have. This hindered our ability to detect cases in children, and created a perception children weren’t commonly infected.
One way to address this issue is through antibody testing, which can detect evidence of past infection. A study of over 60,000 people in Spain found 3.4% of children and teenagers had antibodies to the virus, compared with 4.4% to 6.0% of adults. But Spain’s schools were also closed, which likely reduced children’s exposure.
Another method is to look at what happens to people living in the same household as a known case. The results of these studies are mixed. Some have suggested a lower risk for children, while others have suggested children and adults are at equal risk.
Children might have some protection compared to adults, because they have less of the enzyme which the virus uses to enter the body. So, given the same short exposure, a child might be less likely to be infected than an adult. But prolonged contact probably makes any such advantage moot.
The way in which children and adults interact in the household might explain the differences seen in some studies. This is supported by a new study conducted by the Centers for Disease Control and Prevention. Children and partners of a known case were more likely to be infected than other people living in the same house. This suggests the amount of close, prolonged contact may ultimately be the deciding factor.
How often do children transmit the virus?
Several studies show children and adults have similar amounts of viral RNA in their nose and throat. This suggests children and adults are equally infectious, although it’s possible children transmit the virus slightly less often than adults in practice. Because children are physically smaller and generally have more mild symptoms, they might release less of the virus.
In Italy, researchers looked at what happened to people who’d been in contact with infected children, and found the contacts of children were more likely to be infected than the contacts of adults with the virus.
Teenagers are of course closer to adults, and it’s possible younger children might be less likely to transmit the virus than older children. However, reports of outbreaks in childcare centres and primary schools suggest there’s still some risk.
What have we seen in schools?
Large clusters have been reported in schools around the world, most notably in Israel. There, an outbreak in a high school affected at least 153 students, 25 staff members, and 87 others. Interestingly, that particular outbreak coincided with an extreme heatwave where students were granted an exemption from having to wear face masks, and air conditioning was used continuously.
At first glance, the Australian experience seems to suggest a small role for children in transmission. A study of COVID-19 in educational settings in New South Wales in the first half of the year found limited evidence of transmission, although a large outbreak was noted to have occurred in a childcare centre.
This might seem reassuring, but it’s important to remember the majority of cases in Australia were acquired overseas at the time of the study, and there was limited community transmission. Also, schools switched to distance learning during the study, after which school attendance dropped to 5%. This suggests school safety is dependent on the level of community transmission.
Additionally, we shouldn’t be reassured by examples where children have not transmitted the virus to others. Approximately 80% of secondary COVID-19 cases are generated by only 10% of people. There are also many examples where adults haven’t transmitted the virus.
As community transmission has grown in Victoria, so has the significance of school clusters. The Al-Taqwa College outbreak remains one of Australia’s largest clusters. Importantly, the outbreak there has been linked to other clusters in Melbourne, including a major outbreak in the city’s public housing towers.
Close schools when community transmission is high
This evidence means we need to take a precautionary approach. When community transmission is low, face-to-face teaching is probably low-risk. But schools should switch to distance learning during periods of sustained community transmission. If we fail to address the risk of school outbreaks, they can spread into the wider community.
While most children won’t become severely ill if they contract the virus, the same cannot be said for their adult family members or their teachers. In the US, 40% of teachers have risk factors for severe COVID-19, as do 28.6 million adults living with school-aged children.
Recent recommendations on mask-wearing by older and younger children mirror risk-reduction guidelines for schools developed by the Harvard T. H. Chan School of Public Health. These guidelines stress the importance of face masks, improving ventilation, and the regular disinfection of shared surfaces.
The changing landscape
As the virus has spread more widely, the demographic profile of cases has changed. The virus is no longer confined to adult travellers and their contacts, and children are now commonly infected. In Germany, the proportion of children in the number of new infections is now consistent with their share of the total population.
While children are thankfully much less likely to experience severe illness than adults, we must consider who children have contact with and how they can contribute to community transmission. Unless we do, we won’t succeed in controlling the pandemic.
History tells us trying to stop diseases like COVID-19 at the border is a failed strategy
To explain why the coronavirus pandemic is much worse in the U.S. than anywhere else in the world, commentators have blamed the federal government’s mismanaged response and the lack of leadership from the Trump White House.
Others have pointed to our culture of individualism, the decentralized nature of our public health, and our polarized politics.
All valid explanations, but there’s another reason, much older, for the failed response: our approach to fighting infectious disease, inherited from the 19th century, has become overly focused on keeping disease out of the country through border controls.
As a professor of medical sociology, I’ve studied the response to infectious disease and public health policy. In my new book, “Diseased States,” I examine how the early experience of outbreaks in Britain and the United States shaped their current disease control systems. I believe that America’s preoccupation with border controls has hurt our nation’s ability to manage the devastation produced by a domestically occurring outbreak of disease.
Germ theory and the military
Though outbreaks of yellow fever, smallpox, and cholera occurred throughout the 19th century, the federal government didn’t take the fight against infectious disease seriously until the yellow fever outbreak of 1878. During that same year, President Rutherford B. Hayes signed the National Quarantine Act, the first federal disease control legislation.
By the early 20th century, a distinctly American approach to disease control had evolved: “New Public Health.” It was markedly different from the older European concept of public health, which emphasized sanitation and social conditions. Instead, U.S. health officials were fascinated by the newly popular “germ theory,” which theorized that microorganisms, too small to be seen by the naked eye, caused disease. The U.S. became focused on isolating the infectious. The typhoid carrier Mary Mallon, known as “Typhoid Mary,” was isolated on New York’s Brother Island for 23 years of her life.
Originally, the military managed disease control. After the yellow fever outbreak, the U.S. Marine Hospital Service (MHS) was charged with operating maritime quarantine stations countrywide. In 1912, the MHS became the U.S. Public Health Service; to this day, that includes the Public Health Service Commissioned Corps led by the surgeon general. Even the Centers for Disease Control and Prevention started as a military organization during World War II, as the Malaria Control in War Areas program. Connecting the military to disease control promoted the notion that an attack of infectious disease was like an invasion of a foreign enemy.
Germ theory and military management put the U.S. system of disease control down a path in which it prioritized border controls and quarantine throughout the 20th century. During the 1918 influenza pandemic, New York City held all incoming ships at quarantine stations and forcibly removed sick passengers into isolation to a local hospital. Other states followed suit. In Minnesota, the city of Minneapolis isolated all flu patients in a special ward of the city hospital and then denied them visitors. During the 1980s, the Immigration and Naturalization Service denied HIV-positive persons from entering the country and tested over three million potential immigrants for HIV.
Defending the nation from the external threat of disease generally meant stopping the potentially infectious from ever entering the country and isolating those who were able to gain entry.
Our mistakes
This continues to be our predominant strategy in the 21st century. One of President Trump’s first coronavirus actions was to enforce a travel ban on China and then to limit travel from Europe.
His actions were nothing new. In 2014, during the Ebola outbreak, California, New York and New Jersey created laws to forcibly quarantine health care workers returning from west Africa. New Jersey put this into practice when it isolated U.S. nurse Kaci Hickox after she returned from Sierra Leone, where she was treating Ebola patients.
In 2007, responding to pandemic influenza, the Department of Homeland Security and the CDC developed a “do not board” list to stop potentially infected people from traveling to the U.S.
When such actions stop outbreaks from occurring, they are obviously sound public policy. But when a global outbreak is so large that it’s impossible to keep out, then border controls and quarantine are no longer useful.
This is what has happened with the coronavirus. With today’s globalization, international travel, and an increasing number of pandemics, attempting to keep infectious disease from ever entering the country looks more and more like a futile effort.
Moreover, the U.S. preoccupation with border controls means we did not invest as much as we should have in limiting the internal spread of COVID-19. Unlike countries that mounted an effective response, the U.S. has lagged behind in testing, contact tracing, and the development of a robust health care system able to handle a surge of infected patients. The longstanding focus on stopping an outbreak from ever occurring left us more vulnerable when it inevitably did.
For decades, the U.S. has been underfunding public health. When “swine flu” struck the country in 2009, the CDC said 159 million doses of flu shots were needed to cover “high risk” groups, particularly health care workers and pregnant women. We only produced 32 million doses. And in a pronouncement that now looks prescient, a Robert Wood Johnson Foundation report said if the swine flu outbreak had been any worse, U.S. health departments would have been overwhelmed. By the time Ebola appeared in 2014, the situation was no better. Once again, multiple government reports slammed our response to the outbreak.
Many causes exist for the U.S.‘s failed response to this crisis. But part of the problem lies with our past battles with disease. By emphasizing border controls and quarantine, the U.S. has disregarded more practical strategies of disease control. We can’t change the past, but by learning from it, we can develop more effective ways of dealing with future outbreaks.
Six months ago, Trump said that coronavirus cases would soon go to zero. They … didn’t.
But with new constraints on testing, Trump may get his wish eventually.
This was the briefing in which Trump made one of his most wildly incorrect assertions about what the country could expect.
“The level that we’ve had in our country is very low,” Trump said, referring to new confirmed infections, “and those people are getting better, or we think that in almost all cases they’re better, or getting. We have a total of 15. We took in some from Japan — you heard about that — because they’re American citizens, and they’re in quarantine.”
That part was generally true. At the time, there had been only a smattering of confirmed cases, with the addition of passengers from the cruise ship Diamond Princess pushing the confirmed total to more than 50.
“So, again,” he added later, “when you have 15 people, and the 15 within a couple of days is going to be down to close to zero, that’s a pretty good job we’ve done.”
It was a brash prediction and seemingly an off-the-cuff one. Trump’s point was less about what was going to happen than arguing that his administration had done a good job. But by linking those two things, he made it simple for observers to use his assertion that the number of cases would fade as a baseline for measuring everything that followed.
Over time, more cases from the period before Feb. 26 would be discovered, including two early deaths in California from covid-19, the disease caused by the virus. There were actually almost 200 cases that would eventually be confirmed by the time Trump was saying the country would go from 15 to zero.
The experts standing behind Trump would have known that Trump’s claims were inaccurate. As the briefing was underway, The Washington Post reported a confirmed case of “community spread” — a documented infection that couldn’t be traced to international travel. In other words, it was uncontained: The virus was moving from person to person without impediment or detection.
Although about 200 cases in that period eventually would be confirmed, even that number was far lower than the reality. Researchers can use documented cases to estimate the number of cases that weren’t being detected and that also weren’t later confirmed through testing. For example, an estimate produced by data scientist Youyang Gu puts the likely number of new infections on Feb. 26 somewhere in the range of 13,000 to 25,000.
On that day alone.
Within a month, the country would go from Trump’s 15 cases to nearly 88,000 cases. By April 26, the total was nearly a million. By May 26, 1.7 million. The most recent total is north of 5.7 million.
That steady increase is in part a function of Trump repeating the same mistake over and over, portraying the pandemic as ending or functionally ended. As cases faded a bit in May and June, he pushed for a return to normal economic activity, triggering a new surge in confirmed cases. That second increase has been fading for about a month, happily, but the country is still adding 33 percent more confirmed new cases each day than it did at the peak in April.
That’s confirmed cases, a metric that relies on testing. Gu’s estimates of the actual spread of the virus put the country about 40 percent below the peak in daily new cases, which was reached in early July.
Trump, of course, blames testing for revealing the scale of the pandemic in the first place. He has a point, in a way: Had the United States never managed to solve its problems with testing, something that took weeks, there wouldn’t have been millions of confirmed cases. There would still have been millions of cases or, perhaps, tens of millions of cases. We just wouldn’t have known how many there were.
It has been about two months since Trump held a political rally in Tulsa, contributing to a new surge of cases in the city. There, he made a tongue-in-cheek reference to asking his team to slow down on testing, because it was pushing the number of confirmed cases higher. As they say, though, each joke contains a grain of truth, and it was clear that Trump, in fact, would be happy to see the number of tests drop so that the number of confirmed cases did as well.
Data compiled by the COVID Tracking Project show that he has gotten his wish, to a degree. Over the past month, the number of tests being completed each day in the United States has dropped by nearly one-fifth.
Part of this is a function of interference from natural disasters, with storms in Florida and fires in California limiting testing capacity. Part of it, too, is probably a function of the drop in the number of cases coming back positive. Fewer new cases means fewer people feeling sick and seeking tests to confirm an infection. The drop in the percent of tests coming back positive reinforces that trend.
But, increasingly, part of it will stem from the administration de-emphasizing testing. New guidance published by the Centers for Disease Control and Prevention suggested that those who had been in contact with an infected person no longer needed to be tested, particularly when asymptomatic.
This, too, has been something Trump has talked about a lot, complaining that people without symptoms were being tested and confirmed as positive — and added to the total number of infections.
“Many of those cases are young people that would heal in a day,” Trump said in an interview on July 19. “They have the sniffles and we put it down as a test.”
The reason it’s important to track asymptomatic cases, of course, is that those people can still infect others. To defeat the pandemic, we need to contain it, and the new CDC approach runs the significant risk of leaving large holes in that containment effort. But, with the presidential election only about 70 days away, it will mean fewer confirmed cases.
The irony of Trump’s complaints about the virus from the outset is that the United States’ confirmed infection totals already have been minimized because of limited testing. The reason Trump was able to claim that there were only 15 cases six months ago was that the administration had spent the month since the first confirmed case in the country unable to put together a robust testing regimen that would allow the virus to be constrained. South Korea, where such a regimen was quickly implemented, actually did see its virus numbers drop to near zero.
In other words, Trump’s prediction was not only wrong, it was wrong in large part because Trump’s team hadn’t done what would have been needed to make it come true. Trump portrays himself as an unwitting victim of the pandemic, but his comment six months ago Wednesday is a good reminder that he can put a lot of the blame for his position on himself.
Cartoon – Pandemic Stages of Grief
Long-Haulers Are Redefining COVID-19
Without understanding the lingering illness that some patients experience, we can’t understand the pandemic.
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.
Without clear information from official sources, many long-haulers have found answers from one another. Support groups on Facebook have thousands of members. One Slack group, founded within a wellness organization called Body Politic, has almost doubled in size since June to more than 7,000 active participants from 25 countries. There are channels for discussing every organ system in the body. There are lists of sympathetic medical providers, and tips for convincing those who aren’t listening. Eerily, the group’s membership morphs as the pandemic spreads: “When Brazil had a huge spike, we had a massive influx of Brazilian patients,” said Nichols, who is an administrator.
The Body Politic group has its own team of researchers, whose survey of 640 long-haulers remains the most illuminating study of the long COVID experience. More than any formally published study, it cataloged the full range of symptoms, and explored problems with stigma and testing.
Many long-haulers start feeling better in their fourth or fifth month, but recovery is tentative, variable, and not guaranteed. Hannah Davis, an artist in New York City, still has fever, facial numbness, brain fog, and rapid heartbeats whenever she stands up, but she’s sleeping better, at least; at the end of July, she had her first relatively normal day since mid-March. Margot Gage, a social epidemiologist at Lamar University, has only now regained the ability to read without shooting pain, but still has debilitating headaches and fatigue. Hannah Wei, a product designer based in Ottawa who is a Body Politic researcher, has recovered from her neurological symptoms but not the scars the coronavirus left on her lungs. “Will I be living with this lasting damage, or will it eventually go away?” she says. “I don’t have the answers, and no one can tell me.”
The physical toll of long COVID almost always comes with an equally debilitating comorbidity of disbelief. Employers have told long-haulers that they couldn’t possibly be sick for that long. Friends and family members accused them of being lazy. Doctors refused to believe they had COVID-19. “Every specialist I saw—cardiologist, rheumatologist, dermatologist, neurologist—was wedded to this idea that ‘mild’ COVID-19 infections last two weeks,” says Angela Meriquez Vázquez, a children’s activist in Los Angeles. “In one of my first ER visits, I was referred for a psychiatric evaluation, even though my symptoms were of heart attack and stroke.”
This “medical gaslighting,” whereby physiological suffering is downplayed as a psychological problem such as stress or anxiety, is especially bad for women, and even worse for women of color. “Doctors not taking our conditions seriously is a common issue, and now we have COVID-19 on top of it,” says Gage, who is Black. When she sought medical help for her symptoms, doctors in two separate hospitals assumed she was having a drug overdose.
Such gaslighting still occurs, but has been reduced by the recent spate of media attention. Davis was stunned when she met with a cardiologist who used the term long-hauler without needing an explanation. Vázquez burst into tears after her new primary-care provider instantly believed her. “I went into that appointment armed with my notebook, ready to do battle,” she says. “Just having a doctor who believed that my symptoms were directly related to COVID-19 was transformative.”
Putrino, the Mount Sinai doctor, came to recognize long COVID on his own. Back in March, he realized that some patients who were referred to his hospital were in bad shape but weren’t sick enough to be admitted. His team created an app to keep track of these people remotely. By late May, they realized that “around 10 percent just weren’t getting better,” he told me. He has since started a program at Mount Sinai that’s dedicated to caring for long-haulers.
But such programs are still scarce, creating large geographical deserts where long-haulers cannot find help. Putrino cannot see patients who live outside New York State. Igor Koralnik, a neurologist at Northwestern Medicine who runs a similar operation, was booked solid through April 2021; he has since brought extra staff members so he could accept more patients. Canadian long-haulers “have just one clinic, in Toronto, and that’s it,” Wei says.
Putrino thinks that many long-haulers have symptoms that resemble dysautonomia. This is an umbrella term for disorders that disturb the autonomic nervous system, which controls bodily functions such as breathing, heart rate, blood pressure, and digestion. Damage to this system, whether inflicted by the virus itself or by an overly intense immune response, might explain why many long-haulers struggle for breath when their oxygen levels are normal, or have unsteady heartbeats when they aren’t feeling anxious. Things that were once automatic are now erratic.
More than 90 percent of long-haulers whom Putrino has worked with also have “post-exertional malaise,” in which even mild bouts of physical or mental exertion can trigger a severe physiological crash. “We’re talking about walking up a flight of stairs and being out of commission for two days,” Putrino said. This is the defining symptom of myalgic encephalomyelitis, or chronic fatigue syndrome. For decades, people with ME/CFS have endured the same gendered gaslighting that long-haulers are now experiencing. They’re painfully familiar with both medical neglect and a perplexing portfolio of symptoms.
These symptoms defeat intuitions that people have about work and rest, sickness and recovery. “You have to get away from this idea that you can do more each day, or that you can push through,” says Caroline Dalton of Sheffield Hallam University in England, who works for a COVID-19 rehabilitation program. Many long-haulers push themselves because they miss their lives, or need to return to work. But as her colleague Robert Copeland, a sport psychologist, explains, “managing your fatigue is now your full-time job.”
The trick, then, is to slowly recondition a patient’s nervous system through careful exercises, without triggering a debilitating crash. On Putrino’s team, a strength and conditioning coach devises workouts to slowly get patients accustomed to a higher heart rate. A nutritionist fashions personalized meal plans to compensate for any dietary deficiencies. A neuropsychologist—Gudrun Lange, who has long worked with ME/CFS patients and is helping the group pro bono—uses relaxation and somatic-awareness techniques to help long-haulers manage their feelings about their condition.
Putrino insists on seeing and caring for all the long-haulers that he can. His colleagues at Mount Sinai’s newly launched center for post-COVID-19 care have to follow guidelines that permit them to admit only patients with positive tests. Anyone the center can’t admit is referred to Putrino’s team, which also keeps in touch with the Body Politic group to track patients who fall through the cracks.
I asked him why he is so inclined to believe long-haulers when so many other medical professionals dismiss them. First, he said, “these people are telling us the same things over and over again.” But also, his wife has Ehlers-Danlos syndrome—a group of genetic disorders that affect the body’s connective tissues, and that commonly lead to dysautonomia. “I watched her go through the same thing: ‘You must have anxiety, or panic attacks, or every-excuse-under-the-sun,’” he told me. “Finally, after three years of searching, someone said, ‘Oh, you have dysautonomia and EDS.’ They put her on a treatment protocol, and she could live her life again.”
“If you listen to the population you’re trying to help, they’ll tell you what’s wrong,” he said.
Nichols is a few weeks away from meeting the CDC’s criteria for ME/CFS. She has post-exertional malaise. She has brain fog. On September 9, she’ll mark her sixth month of extreme fatigue. “Am I happy about it? No,” she said. “But I have to face reality. If this is what I have, this is what I have.” Lots of long-haulers are in the same boat. Many (but not all) cases of ME/CFS are triggered by viral infections, and new clusters have historically emerged after outbreaks. “When COVID-19 started to happen, I said to my husband, ‘Oh God, there’s going to be an avalanche of ME/CFS,’” Lange told me.
Some long-haulers are skeptical—and even angry—about the ME/CFS connection. They won’t countenance the prospect of being chronically disabled. They don’t want to be labeled with a condition that has long been trivialized. Nichols sympathizes; she used to trivialize it herself. “I falsely thought it was just people being too tired—and I feel terrible about that,” she said. Her plan is to use her imminent diagnosis as fuel for advocacy, “as a way of paying back the ME community for my disbelief.”
But COVID-19 is still a new disease, and ME/CFS is just one of several possible outcomes. Some long-haulers recover before the six-month threshold. Some don’t have post-exertional malaise. Some have lung damage and breathing problems that aren’t traditional ME/CFS symptoms. Some have symptoms that more closely fit with other chronic illnesses, including dysautonomia, fibromyalgia, or mast cell activation syndrome.
Putrino doesn’t want to assign any labels. “Let’s just start helping them,” he said, while simultaneously collecting data that will eventually show how much long COVID overlaps with other known syndromes. (Several other teams are conducting similar studies.) Even when symptoms such as fatigue are shared, their biological roots might differ—and those differences matter. Exercise might be devastating for someone with ME/CFS, but might benefit a patient with something else. Many long-haulers, meanwhile, are treating any diagnosis as more of an anchor than an answer: It’s a starting point for understanding what’s happening to them. Vázquez, for example, was diagnosed with MCAS, and although it’s not a perfect match for her symptoms, “it’s close enough,” she says.
No matter the exact diagnosis, the COVID-19 pandemic will almost certainly create a substantial wave of chronically disabled people. It might be hard to ignore this cohort because of the sheer number of them, the intense attention commanded by the pandemic, and the stories from celebrities such as the actor Alyssa Milano and the journalist Chris Cuomo. Then again, they might face the same neglect that people with ME/CFS have long endured. “We’ve been demanding for decades that people do something,” says Terri Wilder, who has ME/CFS and is an activist with #MEAction. “I’ve met with [NIH Director] Francis Collins. I’ve called Tony Fauci, and state senators. We still have no FDA-approved drugs, no systems of care. We only have 10 to 15 ME/CFS medical experts in the country. We all want our lives back, and we want this broken system fixed.”
The uncertainty that long-haulers are experiencing results from that long-standing neglect. But so does the help they’re getting from people with chronic illnesses, who have already walked the same path. When the pandemic began, “it was like watching the roller coaster go up the hill, and only people like us knew that the track was broken,” says Alison Sbrana, who has ME/CFS and dysautonomia. She now spends her few productive weekly hours moderating the Body Politic support group. She has invited ME/CFS and dysautonomia specialists to give seminars, and has directed people to credible resources on aspects of disabled life, including care and benefits.
That frontier, in which long-haulers attempt to access social support, “is about to be a shit show,” Sbrana says. 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. “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.
If they lose their jobs, “they’re in really bad shape,” she adds. 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.
Being a long-hauler in August is very different from being one in February. The first wave, who were infected early in the year, endured months of solitude and confusion. While the national narrative shifted from physical distancing to reopenings, their realities were pinned in place by fever or fatigue. Many had no idea that others were going through the same ordeal. They wondered why they were still sick, or how long they’d be sick for. “We didn’t know what tomorrow would bring,” Nichols said.
Long-hauler support groups act as windows in time. In the Body Politic community, “the earliest person we know got sick in January,” Davis says. “She posts from the future, two months ahead of everyone else.” Conversely, as veteran long-haulers watch new generations pass the same monthly milestones, some are struck by a strange sense of solidarity, validation, and jealousy. The newer long-haulers already know what to call themselves, have bustling communities to learn from, and have better access to tests and medical care. The older ones are battle-worn and weary. “There’s something about having got sick in March and April that’s a unique experience, almost like post-traumatic stress disorder,” Vázquez says.
Throughout the pandemic, systemic failures have been portrayed as personal ones. Many people ignored catastrophic governmental choices that allowed the coronavirus to spread unchecked, and instead castigated individuals for going to beaches or wearing masks incorrectly. So, too, with recovery. The act of getting better is frequently framed as a battle between person and pathogen, ignoring everything else that sways the outcome of that conflict—the disregard from doctors and the sympathy from strangers, the choices of policy makers and the narratives of journalists. Nothing about COVID-19 exists in a social vacuum. If people are to recover, “you have to create the conditions in which they can recover,” Copeland, the sport psychologist from Sheffield Hallam, says.
If those conditions don’t exist, they can be at least partly willed into existence. Here, too, the long-hauler story is a microcosm of the pandemic. In the U.S., citizens chose to physically distance themselves, take precautions, and wear masks long before leaders urged or ordered them to do so. Likewise, the long-haulers have taken matters into their own hands, pushing for respect, research, and support when none were offered.
But such effort comes at a cost. Long-haulers are precariously perched on a physiological precipice—a difficult position from which to fight for their future. “A lot of people who don’t have the energy to educate the world are educating the world,” Nichols said.
When COVID infection becomes a chronic disease
https://mailchi.mp/0e13b5a09ec5/the-weekly-gist-august-21-2020?e=d1e747d2d8
The minimal evidence of serious impact of COVID infection on young healthy individuals has been one of the bright spots of this pandemic. Overall, only a small percentage of those infected, mostly the elderly or those with pre-existing conditions, get very sick, and an even smaller number die.
But a new piece in The Atlantic lays out mounting evidence that many younger patients don’t spring back to good health after a few weeks, as common wisdom suggests; instead, they experience debilitating long-term effects, months after infection. The profile of the average patient with “Long-COVID” is just 44 years old, and previously fit and healthy.
She (the condition is much more common in women) likely suffered a mild initial infection. But now, months later, she still faces a wide range of symptoms. Some patients have significant chronic pulmonary or cardiac function abnormalities (like Georgia State’s star freshman quarterback recruit, sidelined for the year with post-COVID myocarditis).
But others are dealing with a different, but just as debilitating, set of symptoms resembling chronic fatigue syndrome (CFS).
And like CFS patients, many COVID “long-haulers” find their symptoms minimized by their doctors. Early studies show that large numbers of patients may be affected: in a series of 270 non-hospitalized patients, the CDC found a full third hadn’t returned to their usual health after two weeks (as compared to just 10 percent of influenza patients).
A handful of centers have taken the first step toward better understanding “Long-COVID”, establishing dedicated clinics to study and treat the growing number of patients for whom COVID-19 is turning out to be a chronic disease, leaving a wave of people with long-term disabilities in its wake.
The kids are not all right
https://mailchi.mp/0e13b5a09ec5/the-weekly-gist-august-21-2020?e=d1e747d2d8
Many children heading back to school—in whichever form that that may take this fall—have skipped their annual visit to the pediatrician. The graphic above highlights the sluggish rebound in pediatric ambulatory volume. While adult primary care visits have mostly bounced back, pediatric visits are still 26 percent below pre-COVID levels.
The drop in visits early in the pandemic also impacted immunizations, with 2.5M regular childhood vaccinations missed in the US during the first quarter of 2020—and early data suggests those seem to be rebounding at a similarly anemic rate.
This lack of pediatric routine care is particularly worrisome as COVID-19 cases in children are climbing, with a 90 percent increase from July to August. Though most of the nation’s largest public school districts have opted to begin the school year with online learning, some districts have already returned to in-person classes, and, unsurprisingly, new cases are already being reported.
While COVID-19 is normally neither severe nor fatal in children, infections among school-age kids put others at risk. According to the Kaiser Family Foundation, nearly a quarter of teachers (1.5M) are considered high-risk and almost six percent of seniors (3.3M) live with school-aged children.
Without the traditional back-to-school push for well-child visits, sports physicals, and immunization updates, healthcare providers must think creatively about how to give children with the care they need, whether through personalized communication from pediatricians that assuages parental concerns about office safety, or through more innovative means such as drive-thru vaccination services.
It looks like what happens in Vegas isn’t staying in Vegas.
Travelers returning from the Covid-19 hot spot are potentially spreading the virus to virtually every state in the nation, according to a new mobility data study conducted on behalf of the non-profit investigative news organization ProPublica.
The findings highlight the connection between travelers and the spread of the virus during the pandemic.
The ProPublica study looked at a total of 12 days of cellphone data in three batches: four days in May, when Nevada was still shut down; four days in June, just after Las Vegas reopened to tourism; and four days in mid-July. In May, travel from Las Vegas was mainly regional. But since Las Vegas reopened in early June, the mobility of smartphones leaving Las Vegas has become progressively more widespread and nationalized.
Over the final four-day period, in July, the study identified 26,000 smartphones on the Las Vegas Strip, many of which later appeared in 47 states within the same four-day period — every state in the continental United States except Maine.
“About 3,700 of the devices were spotted in Southern California in the same four days; about 2,700 in Arizona, with 740 in Phoenix; around 1,000 in Texas; more than 800 in Milwaukee, Detroit, Chicago and Cleveland; and more than 100 in the New York area,” reported ProPublica.
While the study did not determine how many of these travelers were infected with Covid-19 when they returned to their home states, it is reasonable to assume that many were. For the past several months, Las Vegas has been a hot spot for the disease.
Las Vegas is located in Clark County, Nevada, which is currently struggling with one of the highest rates of new COVID-19 infections in the country, with 26.9 new daily cases per 100,000 people tested over a rolling seven-day average, according to the Harvard Global Health Institute’s Covid-19 tracker. Any community with over 25 new daily cases is deemed to be at a tipping point where stay-at-home orders are necessary, according to Harvard researchers.
This isn’t the first data-driven study to show how travelers are spreading Covid-19 across the United States. In early July, the PolicyLab at Children’s Hospital of Philadelphia (CHOP) released research indicating that the novel coronavirus was spreading along the nation’s interstate highways.
“Travel is certainly a huge driving factor,” the researchers wrote at the time. “We see spread along I-80 between central Illinois and Iowa, as well as along the I-90 corridor across upstate New York.” They pointed to a rise in cases along the I-95 corridor and concluded that interstate travel was creating renewed risk to regions like the Northeast that had successfully flattened the curve of the novel coronavirus.
Yesterday, Clark County’s Twitter account announced a grim milestone: The number of deaths attributed to Covid-19 in the community has now topped 1,000.
Why Most Voters Oppose Schools Reopening
Even as test rates hover around six to seven percent and tens of thousands of new Covid-19 cases are being reported daily, school districts across the country will continue with plans to resume operations in the coming weeks. The latest survey data shows, however, that most Americans oppose reopening K-12 education in their states.
Parents have reason to be concerned that sending their children to school could bring the virus into their homes, as well as spike positivity rates in their communities. From July 30th to August 13th, over 75,000 new child Covid-19 cases were reported, according to the American Academy of Pediatrics. The outcome would be disastrous were even one asymptomatic carrier to attend classes in the coming weeks.
A recent survey conducted by the Financial Times-Peterson Foundation US Economic Monitor revealed that six in ten voters oppose reopening K-12 schools in their states, while as many as 81 percent urge the prioritization of health among students and faculty over the economy. Were children to get sick at school, not only would their health be endangered, but so would the health of their families. There would be no economy without healthy parents, which is why the vast majority of Americans urge the safety of American students over the state of the economy.
One of the more prudent concerns about the resumption of K-12 education is the social nature of a student’s daily life. School districts are assuring parents that they have put preventative measures in place, such as social distancing and classroom hybridization. But to assume students will have no interaction at all seems ludicrous. Children and teens have been out of the traditional school setting for over five months and they will be ready to interact with others.
Despite the urge shared by parents and children alike to return to normal, the average voter realizes that the pandemic in the United States is far from over. Parents want their children to stay healthy for many reasons—to ensure the physical health and wellbeing of the family, to ensure the economic livelihood of the family, and to avoid the unknown long term health risks associated with Covid-19. Around 65 percent of voters believe social distancing requirements and non essential business restrictions should be in place for at least another three months—a sacrifice many are willing to make for the sake of their families and children.
Such statistics also show that people recognize there will be several more months of abnormality and want decision makers to take action accordingly, even if it means deprioritizing the economy. Families and individuals have been economically crippled by the pandemic and the US government’s lack of public assistance. The official unemployment rate still hovers around ten percent according to the Bureau of Labor Statistics. Low income families are struggling and eviction rates are sure to spike as rent moratoriums expire. These families have enough to worry about without the added pressure of sending their children back to school at this time.
The reopening of K-12 school districts in the coming weeks presents medical and economic challenges for families in the pandemic era, especially those already disadvantaged or experiencing hardship. Societal immunity is a long way off; as thirty five percent of voters said they would not be likely to get a COVID-19 vaccine were one approved and available by the end of the year, meaning children of those thirty five percent would also be unlikely to get vaccinated. With the inability to ensure the health and safety of students and the unknown economic future to come, schools are better off staying online for the time being.
HENRY KOTULA 