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Chronic Illness

COVID Long Haulers Protest in DC: "Pandemics Are Chronic"

As the COVID-19 public health emergency ends, patients rally for a cure.

Key points

  • The COVID-19 public health emergencies declared by the US and the WHO have just officially ended.
  • Advocacy groups supporting COVID long haulers and post-viral patients demonstrated on the National Mall.
  • Protesters called attention to the "Millions Missing" by setting up hundreds of empty beds.
#ME Action Network / Used with permission.
Source: #ME Action Network / Used with permission.

It was a march on Washington of people too sick to leave their beds.

A day after the federal COVID-19 public health emergency ended, protesters lined up hundreds of empty beds in the nation’s capital.

They symbolized the millions of patients with chronic illnesses—including long COVID—who have gone missing from their lives and society. And they suggest the millions of dollars missing from research budgets to find a cure. It was a call to educate clinicians on a massive scale, fund economic support for patients, and empower patients to partner with scientists driving research forward.

Advocacy groups set up 300 cots in tight rows on the National Mall in Washington, D.C. With red blankets topped with white pillows, the beds seemed reminiscent of the women with red cloaks and white bonnets in The Handmaid’s Tale, a metaphor that for chronic illness sufferers might be fitting given their own movement building solidarity amid gaslighting.

Some 16 million Americans are believed to have long COVID.

“Every one of those numbers has a name, and every name is at the core of a story of profound loss,” said Jaime Seltzer during a press conference at the foot of the Washington Monument. Seltzer directs scientific and medical outreach for the #MEAction Network.

Last week, the World Health Organization officially ended its public health emergency for COVID-19. On May 11, the Biden administration ended the US federal public health emergency after more than three years.

#ME Action Network / Used with permission.
Source: #ME Action Network / Used with permission.

The White House declaration came on the eve of a protest aptly timed for May 12, the international awareness day for myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS. About half of COVID long haulers meet the definition of ME/CFS, therefore encompassing at least 9 million Americans.

Neither long COVID or ME/CFS has a single FDA-approved treatment. But both can dramatically diminish one’s day-to-day functioning.

That emboldens the Millions Missing campaign—co-organized by the Body Politic and ME Action Network. These direct actions began with a demonstration on Capitol Hill in 2016 and grew to more than 100 cities by 2019.

The COVID-19 pandemic has only multiplied the ranks of these “millions missing.”

This latest demonstration comes six months after a similar demonstration outside the White House, which occurred a day after President Joe Biden had declared the pandemic “over” in an interview with CBS’ 60 Minutes.

A New Phase in the Disability Rights Movement

The installation of empty beds aimed to capture some of the same spirit permeating the HIV movement of the 1980s. They recall iconic imagery like that seen when the AIDS Quilt was displayed on the Washington Mall, or when disabled activists crawled up the steps of the US Capitol demanding the passage of the Americans With Disabilities Act.

Millions Missing organizers call for a wider cultural movement supporting disabled people, particularly those with invisible disabilities such as long COVID and ME/CFS.

#ME Action Network / Used with permission
Source: #ME Action Network / Used with permission

“We need to build a scientific, political, and social structure that differs not just a little from the current state of things, but to take the kind of care of one another that is nothing less than revolutionary,” Seltzer said.

Research for post-viral diseases is chronically underfunded. Seltzer cited statistics arguing that to reach parity with other diseases, the National Institutes of Health would need to increase funding 20 times higher than current levels.

“People with epilepsy, AIDS, and autism have all had to fight for their lives. Despite popular conception, scientific progress isn't an engine that runs on its own. It needs all of our fuel—our fire—to make it move,” Seltzer said.

Seven other speakers spoke alongside Seltzer. Several noted they expected to feel symptom flares for days after as a result of attending.

Translating Protest Into Policy

One of those speakers was Gabriel San Emeterio, co-founder of the organization Long COVID Justice and faculty member at CUNY’s Silberman School of Social Work.

San Emeterio recalled his own experiences advocating in the HIV movement and highlighted how the HIV community galvanized to win passage of the historic Ryan White Act. That law, passed in 1990, as part of the federal HIV response, now authorizes programs totaling more than $2 billion delivering life-saving care for HIV.

And just as activism led to establishing an NIH Office of AIDS Research in 1988, San Emeterio argued that the NIH should also create an office centralizing research on long COVID, ME/CFS, Lyme, and post-infectious diseases.

Their organization created the "Pandemics Are Chronic" pledge, which lays out principles for society to center disabled and chronically ill people in policymaking and healthcare.

“Patients must be leading the charge on research into deciding how the research funding is allocated, and which clinical trials to prioritize,” San Emeterio said.

Federal efforts to create such infrastructure are building. At a press briefing on May 9, White House Press Secretary Karine Jean-Pierre cited the Biden Administration’s efforts to set up an office focused on long COVID within the Department of Health and Human Services. The White House also touted its $5 billion initiative called Project NextGen aimed at staying out in front of the virus that causes COVID-19.

The Millions Missing demonstration also comes just weeks after patients gathered on Capitol Hill, urging members of Congress to advance Sen. Tim Kaine’s CARE for Long COVID Act. That legislation would fund federal initiatives that build on decades of research into post-infectious syndromes, streamline the process for applying for disability, and prioritize research helping children with long COVID.

Empowering Patient Voices Across Society

At root, advocates argue, the people living with the condition are the experts in their bodies.

“A broader understanding of how society deals with disease will help us to grow our networks of mutual aid and movements to transform the systems that erase anyone with chronic, transient, intermittent illness and progressive disability,” said Dona Kim Murphey. “That is every last one of us.”

Murphey, a neurologist, historian of science, and community organizer, has both an M.D. and a Ph.D., but she argued that her most important role as a COVID long hauler is as a patient and “citizen scientist.”

Living through the aftermath of long COVID was a lens for viewing the many social questions she’s studied for decades, about who ultimately owns science. Who gets to decide what questions are valid? Who frames the research? Who analyzes the data?

And in the end, the ultimate message is for patients to “become the authors of our own destinies. When we transform the conditions of our own suffering, those conditions will be transformed for others too.”

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