The Long Run

Covid and Social Dysautonomia

Covid Beach 1, by David Derish

In December 2021, data analyst Felix Richter wrote a paper headlined “The Countries Best and Worst Prepared for a Pandemic,” which has aged embarrassingly badly and which speaks volumes about capitalism, neoliberalism, and efficiency. Richter presents the conclusions of the 2021 Global Health Security Index, which measures a country’s preparedness for future health catastrophes by considering “prevention, detection and reporting, rapid response, health systems, compliance with international norms, and risk environment.” In 2021, the worldwide average was 38.9/100. The United States came in at about 76. In early 2020, Trump utilized the 2019 Global Health Security Index to make people less frightened. These predictions were all shown to be inaccurate in the most egregious way possible.

Long COVID, also known as COVID-19 post-acute sequelae, affects up to 1.3 million people in the United States. Tonix Pharmaceuticals conducted a study in which they discovered that approximately 52,000 out of 1 million patients had “long-COVID symptoms between 3 and 6 months” after an acute infection. Furthermore, more than 40% of patients with “long COVID experience fibromyalgia-like, multisite pain.” These symptoms may be severe and have a negative impact on a person’s health, employment, and personal well-being. Long-term COVID sufferers are a neglected group of chronic pain sufferers whose illness is still poorly understood by the general public.

A MSNBC blog post titled “Latest Study on Long Covid Reveals Bad News for Just About Everyone” by Ja’han Jones highlights Long Covid’s “life-altering power.” “The people inviting you to ignore the serious and potentially long-term impacts of COVID won’t be there to console you as you cope” with it “for years to come,” writes Jones. The COVID virus is responsible for the deaths of more than one million people in the US. “The politicians and other hucksters inviting you to go maskless, vax-less and ignore COVID’s force will not be there to console you should you catch the virus.” It’s true what Jones says: no one knows whether the state will help those of us who may become crippled in the future.

To date, no other viral outbreak has generated as much political fervor and controversy as the COVID-19 virus. Many people are vehemently opposed to recognizing long COVID because they feel it is a hoax or has ended, both of which exacerbate the situation. There’s a range of people who are ready to move on because of “the economy,” “inflation,” or because they hate wearing masks, want things to go back to how they were, or view the COVID vaccine as a violation of their civil liberties. All of these folks are certain that the epidemic is over and refuse to acknowledge or consider evidence to the contrary.

However, this normalization of COVID transmission is equivalent to the normalization of incapacitating long COVID. In a society that is increasingly intolerant of people with disabilities, we are creating a new generation of people with chronic illnesses.

To understand how we arrived at this point of extreme selfishness and denial of the truth, the state’s sorry response to this pandemic, and the general public’s selfishness, we must go back to neoliberalism, which makes long COVID so easy for some to deny.

Neoliberalism originated in the 1970s as an attack on “social welfare in the United States and Europe, as well as postcolonial state” sovereignty, according to Lisa Duggan, author of “Mean Girl: Ayn Rand and the Culture of Greed.” Neoliberals wanted to reform global capitalism by limiting government participation on behalf of workers by undermining government efforts at wealth redistribution. From the 1980s to 2008, neoliberal policies succeeded in widening global inequality by undermining workers and “emphasizing individual responsibility over social concern.” But neoliberalism has survived the 2008 financial crisis by becoming even more fascist.

With Trump’s election and the rise of “alt-right forces” and “conservative evangelical Christians,” the last four years have been a complete disaster. Neoliberalism is not limited to just Trump. Duggan argues that the ideology of neoliberalism can be expressed in a great many different ways, some of which include “soft” multiculturalism, inclusiveness, and self-help. Duggan cites Clinton’s welfare reform, which applied a neoliberal logic to public social service, and Obama’s choice to let Wall Street and lobbyists control the 2008 financial crisis and his administration’s decision to ignore the SAFE Act, which would have prevented another crisis—pursuing Dodd-Frank instead.

“The utopian theory of neoliberal freedom and the practical class project” of placing oligarchical elites at the center of economic and state power are incompatible, according to David Harvey. Neoliberalism’s utopian advertising leads some to believe it reduces the size of the state and lets the market run itself. According to Duggan, it’s not about restructuring the government to favor corporations. As a result of the reorganization of political and economic structures, many of the barriers that once existed between the market and the state, as well as “the body, family, and emotional life,” have been eliminated.

Research conducted by the University of Virginia found that people who live in more individualistic communities are more likely to ignore COVID-19 lockdown orders. The fact that risk is both social and individual poses a threat to the ruling class’s power. Neoliberalism has stripped us of our ability to act and argue for a common public good or public interest. Unchecked racist violence, economic insecurity, and a rapidly spreading contagious disease have brought to the forefront the question of how we will socially manage risk.

Politically speaking, it is difficult to acknowledge that a significant number of long COVID patients in the United States are in need of treatment and financial assistance. In order for the government to preserve its legitimacy, it is necessary for it to appear uninformed. This is due to the fact that once this is acknowledged, policies, institutions, and businesses are obligated to take action in response to the situation.

When financial constraints and the need for stimulus checks continued to grow, Trump’s response to the epidemic began to change. One of the most memorable Trump slogans is “the cure can’t be worse than the disease.” According to Pretz, “politicians on both sides of the aisle” immediately abandoned lockdown measures.

Because long COVID can’t be detected through normal testing and appears to be something else, it is easy to disregard the possibility that it is present. The situation, however, becomes increasingly dire as new illnesses continue to emerge. But if we fail to admit that a significant number of the American population is sick and in need of medical care as well as financial assistance to keep them from losing their homes or apartments, the United States will not succeed in the near future.

Denialism has been a constant presence in the United States. It took a long time for this country to enact a mask mandate. Masks are no longer required anywhere. It was widely assumed that the virus spread through droplets, and we were told that we wouldn’t get it if we stood six feet apart from other people because the droplets couldn’t travel that far. But it took some time for many institutions to admit that yes, it is airborne and that it can move across an entire room using airflow like an aerosol, not like a droplet.

It was once encouraged for people to take free tests and not return to work until the results were negative. But at the start of the Biden administration, we lost access to free tests, and people stopped testing as a result. People can’t afford to go out and spend money every time they need a test, so no one tests.

There are currently no infection-prevention measures in place in the United States, and thus no way to prevent infections. It is now resurfacing as the uncontrolled spread of COVID causes an increase in infections. Treating COVID as an endemic has the same effect as covid denialism.

I spoke with Lauren Henderson, a Twitter user and pediatric concussion clinic neuropsychologist with a master’s in school psychology. In March 2020, she became ill but was never diagnosed. “I think we [her husband and daughter] caught it in early March and were all symptomatic by mid-March,” she said. “I had tachycardia and a mild fever after March 2020. I had a rebound or reinfection in mid-June 2020. My energy levels are fluctuating, and I’m getting headaches and encephalitis-like symptoms.”

Ondine Sherwood is a founding member of the UK-based charity LongCovidSOS, which has embarked on a campaign to “put pressure on the government to recognise the needs of those with Long Covid and to raise awareness among the general public and employers so that people with this condition are not discriminated against.” Sherwood says LongCovidSOS grew out of the Body Politic COVID-19 Support Group, which is a US-based support group for patients and caregivers. Now, group members have access to care and support, information, a sense of belonging, and the opportunity to advocate for themselves.

In 2020, Lauren made the decision to document her experience with COVID on Twitter. “There have been and continue to be numerous ethical concerns raised by this project, which I self-assigned,” she tells me. “I’ve been on Twitter every day since Spring 2020, and some days I’ve felt raw and upset.”

Henderson says she has received mostly positive feedback.

“I’ve gotten a wide range of reactions, not all of which have been positive. I believe it [the denial of chronic illness] is a systemic problem. I believe most of us have been trained to deny the existence of chronic illness, particularly these symptoms,” has been encouraging. It’s been an honor and a moving experience to be a part of the other people who are pursuing scientific insights. It’s been thrilling to make connections and watch scientific understanding evolve in real time. Other people with LC symptoms and other sequelae with whom I correspond provide me with a lot of support. I believe there is a desire for something meaningful, useful, to emerge from the struggle.”

Sherwood tells me, “There are certainly many people with long COVID who refuse to accept it.” She goes on,

Some of the internet hate directed at people who discuss their symptoms is horrible. People tell you, ‘Oh, you’re weak and frail, and it’s all in your brain. And get more exercise and fresh air.’ And there’s almost hatred; it’s not a lot of people. They are most likely a small minority, but they are aggressive. I believe they deny the existence of this illness because they don’t want to think about it. They refuse to believe it. They want to do whatever they want and mingle with large groups of people, so they’d rather pretend it doesn’t exist and criticize those who don’t.

In terms of the actuality of long COVID, despite its detractors, it stands to reason that someone infected with a very inflammatory disease will experience long-term nervous system difficulties. As with fibromyalgia, the validity of long COVID has been called into question. After years of lobbying and advancements in neuropathy, the theory that nerve fibers and brain inflammation are connected is more accepted. There are those who believe that fibromyalgia is an “imagined” condition and do not believe it is a “real” condition.

Sherwood claims that her country was unprepared for the possibility of long-term consequences. “There was no planning for the possibility that people would still become ill. It was either you died, ended up in the hospital, or got better. There was no other option. We were not prepared for the morbidity aspect.”

“I believe it is critical that people with long COVID who are disabled by it be recognized as disabled.” Some in the UK want COVID to be recognized as an occupational illness, says Sherwood.

Long COVID is an occupational illness. People who have caught COVID at work are losing their jobs. The issue is that people who are not completely disabled can’t return to work. Depending on what their job was. Some people can return to work part-time, but if their jobs are physically demanding or require long hours, it’s difficult. People have lost jobs and doctors and need help. Sherwood tells me that “some people may have much milder symptoms, but it still has an impact on their lives.”

It’s work or starve for the working class, who must always have their own steady income, either their own or that of a dependent (parent, spouse, or child). Lockdowns force workers to choose between eviction, losing health care benefits, starving, or spreading disease. A long illness and disability pose a risk to the work discipline required of workers under capitalism.

Care work is undervalued and unstable, which will have long-term effects. Since care work is feminized, it is underpaid and precarious, performed by low-wage immigrant workers in the gig economy who face widespread harassment, violence, and wage theft. According to Sarah White Kimmerle, capitalism is “hampered by both capitalism’s dependence on women’s domestic work as well as their undervalued care work and often precarious part-time employment” and the “sexist ideas that persist and ensure the gendered division of labor is reproduced over and over again.”

The crisis of care has been described by writers such as Gabriel Winnant as the result of austerity and deindustrialization, which have been exacerbated by the rapidly aging population. In the middle of a global epidemic and a healthcare crisis, at a moment when our society should be investing in recruiting more healthcare workers, “many nurses have been laid off, while billionaires grew their fortunes to the tune of $1 trillion.”

A person’s actions encourage the illness to spread and mutate further when they say things like “I’m unwell, but I have to go to work,” or “my job puts me at danger, but I can’t afford to lose it,” or “I had to take care of a loved one who is sick, but I have no paid leave.” They are also putting the lives of individuals they care about in jeopardy. But they don’t have much of a choice.

People are eager to go back to normal, whether it’s because of the economy, inflation, masks, or they think the COVID vaccine shields them from all variables. But it is impossible for life to go on normally with long COVID transmission becoming normal. This is not an endemic, but a policy failure. As long as we hold firm to the notion that risk is individual, not shared, we will never get out of this pandemic.

Marian Jones