Long COVID and social struggle

Long COVID has infected tens of millions of people in the United States. Roughly 17 million people are reported having Long COVID in the United States as of March 2024 by the CDC Household Pulse Survey. Many millions have found themselves unable to work for months or even years. People with Long COVID have faced a lot of harmful stigma from medical providers, social service agencies, and even friends and family. As is normally the case, the burdens of Long COVID have fallen disproportionately on working people, particularly on people who suffer from racism and other oppressions. However, research on racial/ethnic disparities has been hampered by different definitions of Long COVID and by the strong probability that racially oppressed groups are less likely to be diagnosed with Long COVID if they have it.

As happened a generation ago when the needs of People Living with HIV/AIDS were downplayed and ignored by the government and by employers, the media were slow to cover Long COVID. Then, when they did begin to cover it, they have by and large treated people with Long COVID as victims, that is, as objects of pity, rather than as humans with their own subjectivities and their own thoughts and ability to organize.  Many people with Long COVID, despite this, have been organizing to make demands on the system and to support each other in a variety of ways.

People with Long COVID are accomplishing some of their immediate goals, though many critical goals remain unmet. Long hauler activists are deeply engaged in advocacy and organizing. Many long haulers suffer from profound fatigue and cognitive dysfunction, which means that for many, their activism is exhausting. External obstacles can seem enormous, both in size and number. Many of them are housebound, bedbound, or otherwise meet the ADA definition of disability, a person who has a physical or mental impairment that substantially limits one or more major life activities. Even when some obstacles get overcome (such as personal ones like obtaining insurance company recognition that one’s medical costs are legitimate or public ones like having a news outlet recognize the existence of Long COVID), other obstacles come up in their place. Some challenges are foundational, like winning a universally accepted working definition of Long COVID, or even winning acceptance of its very existence.

Since the beginning of the pandemic, mainstream awareness, acceptance, and dialogue have increased. The media frequently portray long haulers as pitiful victims. While most people wouldn’t wish it on their worst enemy, having the media frame it in terms of “pity” can lead many readers to feel an implicit superiority over the “victims.” There’s a tone of reassurance that Long COVID is rare and it happens to “them,” not to the reader–as if long haulers aren’t also those readers, or citizens of society.

In spite of such media “recognition,” long haulers still fight for basic needs and for the condition to be addressed with commensurate urgency. Friends, family, medical professionals, researchers—and sometimes even others within the Long COVID and disability community—deny, diminish, and disregard their symptoms and experiences. The early pandemic refrain that “We’re All In This Together” mocks people with Long COVID like a broken promise—an insult to those whose “real life” can’t go “back to normal.”

A report issued by the U.S. National Academies of Sciences, Engineering, and Medicine in June 2024 aimed to summarize the research and issue a consensus definition of Long COVID that would help dispel doubts about its reality, make it easier for patients to receive needed care and benefits, and reduce stigma towards people with Long COVID. It has generally been received favorably by Long COVID groups, although a number of significant shortcomings have also been pointed out.

In part, this report responds to prior scientific and popular skepticism about Long COVID. For example, a pre-print study authored by Queensland Australia’s Chief Health Officer Dr John Gerrard, tried to eliminate both the term and very concept of Long COVID itself by claiming that its use causes “unnecessary fear” and “hypervigilance”. The embargo date of this study, noticeably on the Second International Long COVID Awareness Day (15 March, 2024), was particularly cruel to millions who looked forward to that single day for recognition, solidarity, and action. The study’s title also claims “expert reaction” while millions with Long COVID are the true experts of the condition’s reality and experience. (See these two statements for how AIDS activists have expressed this over the years.)

This patient expertise comes from several sources. First, the name itself is a patient-coined phrase tweeted with a hashtag by Dr. Elisa Perego on May 20, 2020. Patients have found and educated each other about their various similar patterns of lingering or new post-infection symptoms. Another source of expertise is their daily experience of living with the condition. Yet another is that some long haulers spend a great deal of time reading the literature and talking with others, developing a fairly high level of expertise, while long hauler organizations systematize and organize what they’re learning (see groups listed below). There are of course other kinds of expertise that researchers may develop through their research and medical knowledge—but Long COVID patients and organizations also include people who have medical backgrounds and who conduct research on the condition such as those in the Patient Led Research Collaborative.

Learning from struggles around another pandemic: HIV/AIDS

Many long hauler activists are inspired by ACT UP and TAG, the HIV/AIDS activists who fought years ago for visibility, demanded respect, and ignited action so that others could live and be free. Likewise, ongoing COVID harm reduction efforts such as local mask blocs draw ideas and inspiration from the AIDS-era struggles for needle exchange programs and condom distribution. Indeed, it’s not uncommon to find Narcan being distributed along with masks, and for those distributing masks to provide training to those who take Narcan.

Vito Russo’s “Why We Fight” speech at an ACT UP demonstration in Albany, NY in 1988 echoes in the minds and conversations of long hauler activists. Some of the major points that Russo makes and that seem particularly germane are:

• On pity: “… newspapers and magazines and television shows, which are interested in me as a human-interest story—only as long as I’m willing to be a helpless victim, but not if I’m fighting for my life.”
• On stigma: “It’s not happening to us in the United States, it’s happening to them—to the disposable populations…. The media tells them that they don’t have to care, because the people who really matter are not in danger. Twice, three times, four times—the New York Times has published editorials saying, don’t panic yet, over AIDS—it still hasn’t entered the general population.”
• On inaction: “You know, for the last three years, since I was diagnosed, my family thinks two things about my situation. One, they think I’m going to die, and two, they think that my government is doing absolutely everything in their power to stop that. And they’re wrong, on both counts.”

We would add, based on Sara Johnson’s own experience, that when you’re sick for years on end, every moment feels unbearable. After four years, the lack of government and other urgency to research, treat, prevent, or support Long COVID should fairly be characterized as inaction, apathy, and indefensible.

Larry Kramer, who had been a founder of Gay Men’s Health Crisis and later was the primary founder of ACT UP, addressed the issue of politicization of AIDS science and AIDS struggles in 1983 on Vito Russo’s “Our Time” Episode 4, March 3, 1983, AIDS. He argued that “Gay Men’s Health Crisis is not allowed to be political. And it is time to be very, very political.”

While aspects of COVID have been made worse with inappropriate politicization, engaging politically on behalf of long haulers is now necessary. But you can’t support people with Long COVID without acknowledging that COVID is an issue and a public health failure.

Organizing by long haulers

If we talk about organizing by long haulers, it makes sense to mention the most visible people or groups out there. (All descriptions below came from each org’s website).

Some of the most visible groups organizing for long haulers and their needs are:

• The Sick Times: Journalist-founded website chronicling the Long COVID crisis and other chronic conditions associated with infections;
• Moonshot: The Long COVID patient community coming together to advocate for at least $1 billion per year beyond the RECOVER program allocated to the NIH for Long COVID research and clinical trials. The Moonshot program had a first success when Bernie Sanders, on April 9, 2024, announced his $10 billion bill to address the Long COVID crisis;
• Patient Led Research Collaborative: A group of Long COVID patients and patients with associated illnesses such as ME/CFS and POTS, who are also researchers. Their mission is to facilitate patient-led and patient-involved research into Long COVID and associated conditions while following rigorous research methodology, and to advocate for policies that enable patients, particularly the most marginalized, to access care and live with dignity;
• Long COVID Kids: Charity supporting and advocating for children and young people living with Long-COVID related illnesses and their caregivers. Advocacy and awareness expands beyond children to things relevant to adults with Long COVID, like the UK COVID Inquiry;
• Long COVID Justice: A project of Strategies for High Impact takes part in and leads grassroots, collective efforts to confront the Long COVID crisis, while centering racial, social, economic and disability justice. Their work is done by and for chronically ill and disabled people, their families and communities;
• Long COVID SOS: UK-based charity by people with lived experience of Long COVID, playing a major role in generating awareness through social media and press campaigning to national and international organizations as well as the research community;
• Pandemic Patients: 501(c)(3) patient advocacy organization that works to relieve the harm caused by COVID-19. Through direct services and support, Pandemic Patients helps Long COVID patients with legal issues related to disability and employment. Notably, Pandemic Patients assists Long COVID patients obtain disability benefits through their workplace disability insurance policies and the Social Security Disability Insurance (SSDI) program.

This is an impressive list, and we would emphasize that there are many local organizations as well. New participants in these groups find relief and joy in meeting others who understand the stigmas of living with Long Covid and/or being COVID-cautious in a world where governments and culture have normalized denial.

It is worth mentioning some of the forms of organization that have not been set up (as far as we know) that were during the early years of HIV/AIDS. So far, people with Long COVID have not set up a direct action group like ACT UP. They also have not set up the plethora of local service and education nongovernmental organizations like Gay Men’s Health Crisis and San Francisco AIDS Foundation, nor specialized service organizations like PAWS to take care of the pets of people who were too sick to take care of them. This lack of service organizations probably stems from some of the differences between the diseases. For HIV/AIDS, gay activism was fairly well established in many areas by the early 1980s. Further, those who set up the service organizations, and kept them going, were a mix of the infected and the uninfected, and many of the infected felt healthy much of the time. With Long COVID, the lack of these service organizations, and the lack of government programs, means that people’s daily services and needs aren’t being met, especially during periods when they are homebound and bedbound. Since their families don’t believe in the reality of Long COVID, they also often do not provide for their daily dressing, bathing, and feeding needs. People with Long COVID lack services to help them apply for and navigate insurance mazes, and there are no organizations to provide wraparound services for various unmet personal, legal, and medical needs.

Demands of March 24, 2023 Long COVID March

Some direct actions have taken place. At this demonstration in Washington, DC, people with Long COVID issued the following list of demands:

1. Declare Long COVID a National Emergency.
2. Implement Emergency Use Authorization for drug repurposing and trials.
3. Establish annual funding for Long COVID programs and research to find a cure.
4. Ensure racial and gender health equity in research, access to clinical trials, antiviral drug repurposing, preventative measures, educational campaigns, and social services.
5. Enact Clean Indoor Air Laws to prevent SARS-CoV-2 forward transmission in public spaces and forced-congregant settings.
6. Implement respirator use and clean air protections in health care facilities. Additionally, devise strategies to ensure immunocompromised patients or those with Long COVID are given reasonable accommodations and are not penalized. Enforce protected class status for people with Long COVID as disabled.
7. Fast-track compassionate allowance and sufficient social support for people with Long COVID in addition to increased funding for Home and Community Based Services.
8. Develop guidelines for physicians on Long COVID and continuing education on breaking research.
9. Acknowledge that Long COVID affects children and implement specialized care immediately.
10. Public tracking of SARS-CoV-2 in wastewater at Publicly Owned Treatment Works and provide affordable PCR testing nationwide.
11. Establish regular White House press communication regarding progress toward stated goals and real time data for COVID transmission awareness.

Difficulties that people with Long COVID might have in organizing

Organizing is never easy. Some people in the Long COVID and other COVID-related groups often talk about efforts to organize around AIDS issues in the 1980s and after, and in doing so may romanticize ACT UP and harm reduction organizations.

As we mentioned above, there are some fundamental differences between the context that facilitated the organizing of ACT UP and those available to Long COVID organizers. Most importantly, ACT UP, as well as earlier AIDS groups like STOP AIDS and the Gay Men’s Health Crisis, arose from within LGBT (as it was framed at that time) communities that had already coalesced as a result of struggles around gay liberation and the entrepreneurial economic efforts of some gays and lesbians. (Harm reduction, and particularly user activist groups, built upon infrastructures around drug treatment, HIV outreach and research projects focusing on people who inject drugs and other people who use drugs, and drug-using members of the gay community. Since these were less developed organizationally than the LGBT community, and also due to the repression and stigmatization of the War On Drugs, they were slower to develop.) Long COVID, although by no means equally prevalent in all population groups, is much less concentrated in already-mobilized communities—although the number of people with Long COVID is far greater in the United States than the number with AIDS, or even with HIV, ever was.

Somewhat counterbalancing these limiting factors is the existence of email and social media. These allow people with Long COVID to find each other and to communicate fairly easily. For HIV organizing, perhaps you went to a bar to meet people. For Long COVID, much of this takes place online. In terms of organizing, however, face to face meetings in bars and homes offer many advantages, including the opportunity to get to know other people in more depth and the ability to form a small crowd who can walk together to attend a direct action.

As with AIDS, organizing around Long COVID is likely to be weakened by the racial/ethnic and class divisions that exist in society. The implications of these divisions may be somewhat different from in the 1980s, however. AIDS organizers were probably less aware of these divisions and their intersectional complications than organizers today. On the other hand, rooted as they were in oppressed LGBT and drug-using communities, many of them had experience working in a variety of movements against oppression. Long COVID has emerged in a society in which major political leaders are consciously using racism as a political cudgel, and many people with Long COVID undoubtedly buy into these efforts. On the other hand, current Long COVID organizers seem primarily to be opponents of such racism. Regardless, as with AIDS, one issue that will face Long COVID groups is likely to be racial segmentation of organizations and competition for funding by groups rooted primarily in different racial/ethnic/class groups.

Another issue is likely to be organizational form. Many current Long COVID groups are nonprofit organizations with boards of directors and the like, rather than grassroots democratic movement groups. The NGO format serves reasonably well as a conduit for funding to provide social and medical services, but stifles the freewheeling creativity of groups run democratically by a membership.

Enemies and friends in the long run

Everyone at some level feels sorrow about the difficulties and pains of people with Long COVID. Even the media express pity and regret the fate of the “victims,” as we discussed above. When considering what it will take to get “the system” to meet the needs and demands of the Long COVID community, however, we have to think through the needs and interests of the powerful and why this means some demands may be more easily met, whereas others may be resisted. Then, based on this discussion, we can consider who might be lasting friends of the movement for COVID justice–that is, who shares needs, interests and to some extent experiences and ideals with people living with Long COVID.

The core interests of the powerful are their ability to compete economically and military with other countries and other businesses. From this perspective, a person living with Long COVID is less able to contribute to profits, competitiveness, and potential war than she or he was before getting sick. From this perspective, then, people with Long COVID are dis-abled. As such, unless they can “get better,” they are similar to old people like one of the authors of this article—their upkeep and care are drains on the resources available to the rich and powerful, and they have only limited ability to help make profits or other needed resources. We can see what this means in practice by thinking about events at the beginning of the COVID-19 pandemic. Hospital capacities were being severely strained, so some patients had to be moved out. In states like New Jersey, this meant that the governor and hospital managers decided to off-load senior citizens to nursing homes, despite the self-evident facts that this would mean that huge numbers of the elderly would get sick and die. We doubt that this action was taken on the basis of careful profit-and-loss calculations on the part of the governor. Most likely, it was thought of in terms of “Who can we most afford to lose? Whose survival and recovery is most important? Whose lives are most useful?” Or perhaps they did not think much about it at all, given the system’s indifference to the fates of the aged.

Similar logics are likely to apply in meeting Long COVID community needs and demands. Demands for research to cure Long COVID or to eliminate its symptoms—and thus restore “patients” to being so-called full-value workers, consumers, and breeders/raisers of children will meet a friendlier reception than demands for adequate and easy-to-get-and use health insurance or for adequate disability payments (which the powerful view as costs without increasing profits or competitiveness.) In Marxist terms, such payments are a drain on surplus value, whereas research on a cure is an investment to develop pharmaceutical profits while restoring the sick to being fully-exploitable providers of labor power.

The powerful also care about social stability and, to some extent, about their reputations and image. To the extent that the Long COVID community can threaten these, it can generate some clout to force gains and wins that might otherwise be rejected. ACT UP and other groups in the early AIDS era won some useful changes precisely to the extent they could attack social stability or the images of the powerful.

What are the implications of this analysis for the Long COVID community? Allies will be needed during the struggles ahead. There will be many allies for the demands that help the ruling class meet its goals, like demands for research into cures or COVID prevention. For other types of demands—those that either carry costs to the system in order to improve the lives of people living with Long COVID or to make society more caring and supportive—it is important to think of shared support for specific demands, such as universal free health care, and also in terms of shared interest in creating a gentle and caring society.

Cooperation and shared struggles already are being forged with the “disability community” and with nurses’ unions around some of these demands. These alliances grow out of shared needs, shared frustrations, and shared experience with the need to make demands to get gains on many needs.

There are other potential allies. Most working class people, whether employed, unable to get work, or too tied down with family responsibilities to have time and energy to work, understand the need for economic and social support and for good, accessible and reliable health insurance and disability benefits. They and their friends and families know that their ability to work, to tend to the needs of children or ailing relatives, can easily disappear in an instant by way of workplace injury, catching COVID, tripping down stairs or being hit by a car, or being victimized by a cop. Members of oppressed groups, such as Black or Indigenous people, or LGBTQ people, also tend to be aware of these needs and threats, particularly if they are poor or working class.

These groups are probably the most structurally-inclined to ally with people with Long COVID. Within each of them, there are groups who understand the need to make trouble, to organize, to act up, to win gains from the powerful.

And within these groups, also, are the activists who have socialist or anarchist or emergent ways of acting based on understanding that wresting gains from the powerful is useful, and often necessary, but that the capitalist system is in a deep crisis—a crisis of climate change, of low levels of profit generation (relative to what they already have), and of imperial rivalry among nations. All of this means that all gains for us are only temporary and ever-threatened—and thus that groups with needs the system cannot meet over the long run need to find ways to work together to end capitalism and replace it with a world where everyone cares for each other. People with Long COVID share this need, and will share in the joys of living in a world transformed.

Featured image credit: NIAID; modified by Tempest.

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