“Millions Missing” protest at the Capitol demands myalgic encephalomyelitis funding, social support

Myalgic encephalomyelitis (ME), Long COVID, and other chronic disease advocates demonstrated outside the Capitol Building in Washington, D.C., this afternoon.

Organized by the advocacy group #MEAction, demonstrators demanded that the federal government fund ME research and preserve vital social support systems like Medicaid and telemedicine. The demands are in response to the Trump Administration’s assault on people with disabilities and scientific research this year, which has targeted many diseases, including ME and Long COVID, despite the ongoing pandemic.

“There is a campaign of revenge against infectious disease, public health, and infection-associated chronic conditions, in particular, because of the COVID-19 pandemic,” Jaime Seltzer, the scientific director of #MEAction, said in an interview with The Sick Times. Seltzer said the administration has also exhibited a palpable disdain for disabled people, who are being actively targeted by Trump.

“But we are here to help each other, and there is hope for the future,” she said. “As long as we stick together and continue to fight, we will emerge again.”

Demonstrators gathered in Upper Senate Park across from the U.S. Capitol building on Monday, holding signs calling for an urgent “SOS” for ME and Long COVID funding and the dignity of all disabled people. The May 12 protest was planned for World ME Day, which recognizes a disease that is among the most underfunded and stigmatized, despite its prevalence and exceptionally poor quality of life. Seltzer said that ME is the lowest-funded illness compared to its disease burden in the NIH portfolio.

A recent NIH RECOVER study in the Journal of General Internal Medicine found that the rate of ME cases was 15 times higher after 2020 than pre-pandemic. The researchers found that 4.5% of people infected with SARS-C0V-2 met the diagnostic criteria for ME. Other studies have similarly found that many people with Long COVID meet the criteria for ME.

The advocacy group is demanding $50 million in funding for an ME “research roadmap” that would outline how the federal government would advance research and clinical trials for the disease.

Millions Missing 2025 adds to growing global demonstrations

#MEAction, founded in 2015, has raised awareness about ME and other chronic diseases like Long COVID with international “#MillionsMissing” protests and demonstrations that center the millions who do not have the ability to leave their homes or beds, especially those with Severe ME. 

In 2023, the group constructed a provocative art installation of “bed activism,” with hundreds of cots at the Washington Memorial representing people with ME. Photos from a 2022 “lie-in” in front of the White House have been used widely across media platforms in articles on Long COVID and ME.

In a press release, #MEAction wrote that those with ME and Long COVID are some of the most vulnerable communities already on the margins of survival. U.S. House–proposed Medicaid cuts of nearly $1 trillion dollars over a decade would only exacerbate the crisis, they argue. Guardian columnist George Monbiot has called the neglect of ME “the greatest medical scandal of the 21st century.”

People around the world have also protested in recent days for ME research, funding, and support. These include other Millions Missing protests, #LiegendDemo demonstrations across Germany this past weekend, and a Not Recovered UK protest in the greater London area.

Since President Trump took office earlier this year, his administration has begun a war on science and public health, slashing at least $1.8 billion in research grants for numerous diseases and conditions, from HIV to cancer. These actions have contributed to numerous protests across the country, including Stand Up for Science.

Through executive orders and other cuts, the Trump administration has placed a clear target on COVID-related research and programs, including Long COVID, said #MEAction executive director Laurie Jones. The administration has defunded COVID-19 research and falsely claimed that the pandemic is “over.” The administration cut a federal advisory committee on Long COVID, the Office of Long COVID Research and Practice, and federal resources on Long COVID as a disability. 

The administration also attempted to axe Long COVID pathobiology research grants, a part of the NIH’s RECOVER program, last month — but the grants were restored thanks to community advocacy.

ME research has also been under attack. In March, the Trump administration cut $400 million in research funding to Columbia University, resulting in the shuttering of one of the few federally funded research centers for the disease. “Patients have given their literal blood for the ME/CFS research centers,” Seltzer said, “only to see their funding revoked and answers pulled just out of their reach.”

Patients have given their literal blood for the ME/CFS research centers, only to see their funding revoked and answers pulled just out of their reach.

Jaime Seltzer

Advocates risk their health for travel to D.C.

Demonstrators for the #MEAction protest have come from across the country to share their experiences with ME, Long COVID, and federal support systems like Medicaid. Shaina, who has had severe ME for over 20 years, is one of them. She traveled from Louisiana with her husband, David Burks. 

In an interview on May 8, Shaina said that when she lost Medicaid in the past, it exacerbated her severe illness and financial hardships. Unable to participate in earlier protests because of the severity of her ME, she looked forward to speaking at the event about her experience with Medicaid and ME. Still, she stressed the difficulty of in-person events and actions for people with energy-limiting diseases like ME and Long COVID.

“Just the travel alone can feel insurmountable,” Shaina said, explaining that a protest or demonstration “is a lot on a person like me.” People with ME experience post-exertional malaise (PEM), in which symptoms get worse with physical, cognitive, or emotional exertion. Some PEM “crashes” can permanently alter a person’s health baseline.

Burks said that he and Shaina also risk infections during travel and the protest, which can also worsen health baselines for people with infection-associated chronic diseases like Long COVID and ME. “We’re still masking,” he said, among other precautions.

Despite all the risks, Burks said it’s worth showing up at the demonstration to bring more awareness to the disease and how it affects people, particularly marginalized communities and people of color.

“I know people of color that are languishing out there [with Long COVID and ME] with no idea what’s going on,” said Shaina, who is Creole. Despite the widespread prevalence of ME and Long COVID following SARS-CoV-2 infection, many public health authorities have failed to properly educate people and medical providers about the diseases, leading to increased stigmas.

“We need people to have skin in the game, they need to understand that they’re not just fighting for us,” Shaina said, about a need for allies to help people advocate for ME, Long COVID, and other disabilities. “They’re fighting for themselves.”

We need people to have skin in the game, they need to understand that they’re not just fighting for us. They’re fighting for themselves.

Shaina

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The Sick Times will continue following Long COVID-related news from the Trump administration. Send us tips at editors@thesicktimes.org, or reach out to Betsy on Signal @betsyladyzhets.25 or Miles at milesgriffis.31.

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