People with infection associated chronic conditions (IACCs) use a broad range of strategies to fight for awareness and better care.
Key points you should know:
- While national-level lobbying often gets more attention than other forms of patient advocacy, advocates and activists with energy-limiting chronic illnesses use a range of strategies to pursue better systems and care.
- State- and local-level advocacy, improving provider education, and mutual aid are among these strategies.
- Direct action, which includes confrontational tactics like civil disobedience, has been used by some groups, but is an inherently more challenging strategy for people with energy-limiting chronic illnesses.
- Want to get involved? Research the landscape, seek help from others, and work in coalitions.
When the North Carolina legislature introduced a bill to ban mask wearing in spring 2024, Triangle Mask Bloc took notice.
The mask bloc swung into action: they mobilized volunteers, shared talking points with speakers at a legislative session on the bill, and organized multiple “phone zaps,” phone banks in which community members called legislators to ask them to oppose the bill.
Ultimately, the ban became law, but advocates’ work has been credited with ensuring the final bill included a medical exemption. “It was really … eye-opening to me to see how many disabled people around the country and within the state really got involved and wanted to speak out, even if it was just from their home,” said a Triangle Mask Bloc member. (All mask bloc organizers quoted in this story requested anonymity out of concerns for their safety.)
Across the U.S. and around the world, politicians have falsely declared the pandemic “over,” and they continue to ignore Long COVID despite its impact on society. There are still zero approved cures for it, myalgic encephalomyelitis (ME), or other related chronic diseases; patient-led advocacy and activism are as important as ever. Advocates emphasize that a broad range of strategies — going beyond efforts aimed at national governments — is needed to secure better care and outcomes for patients.
Federal policy changes can have big impacts, but are often slow, and may not affect other systems and structures that chronically ill patients rely on, such as healthcare provision or access to personal protective equipment like masks and hand sanitizer. Strategies like state and local advocacy, provider education, mutual aid, and direct action can sometimes produce change more quickly and can strengthen broader care structures, all while building community.
In the U.S., these strategies have become increasingly important as the federal government has attacked COVID-19 prevention and Long COVID efforts.
Although the terms “advocacy” and “activism” are sometimes used interchangeably, “advocacy” usually refers to strategies that seek change by influencing actors within existing sociopolitical systems, while “activism” usually refers to strategies that operate on the ground, within local communities, or outside existing systems.
Here are just some of the strategies advocates and activists are using.
State and local advocacy: A vital forum
State and local governments are a vital forum for advocacy for chronically ill communities. Some policies — such as regulations governing access to Medicaid, or mask bans — are usually enacted by state and local institutions. And advocates may find it easier to form relationships with policymakers or influence decision-makers at the subnational level.
The fight against mask bans has been a crucial form of advocacy at the state level. Mask bans harm people with Long COVID and other chronically ill or immunocompromised people by criminalizing a vital tool they use to protect their health. Mask blocs have been key leaders in many of the fights against mask bans.
In New York, advocates launched Jews for Mask Rights in response to Gov. Kathy Hochul’s June 2024 announcement that she was considering a mask ban, purportedly in part to counter antisemitism. Mask ban proponents have attacked pro-Palestinian protesters for mask wearing.“I was frankly flabbergasted that anybody would say that the Jewish community was calling for a ban on masks,” said Michal Richardson, a volunteer with Jews for Mask Rights.
Richardson and other members of the group wrote a sign-on letter calling on the state to protect New Yorkers’ right to wear masks, which has over 2,500 signatures from members of the Jewish community. In January, nearly 100 organizations, including Jews for Mask Rights and the grassroots group Long COVID Justice, sent letters to the New York government opposing a mask ban.
I was frankly flabbergasted that anybody would say that the Jewish community was calling for a ban on masks.
Michal Richardson, a volunteer with Jews for Mask Rights
In the spring, Jews for Mask Rights was among those that mobilized to combat Hochul’s attempt to insert the mask ban into New York’s budget bill. While the final bill included provisions that increase penalties for wearing a mask while committing certain crimes, the ban on masking itself was successfully defeated.
Groups also provide broader education on the dangers of mask bans. Long COVID Justice has collaborated with others to conduct webinars, provide toolkits, and lead “political education around mask bans and the implications of them beyond healthcare concerns,” such as their impact on civil liberties, said Long COVID Justice director Emi Kane.
Advocates also press state and local governments for improved healthcare. In Germany, Berlin Buyers Club, also known for their eye-catching stickers and billboards that have made their way around the world, has challenged the Berlin government’s claims that people with Long COVID and ME can access care. In March 2025, Berlin Buyers Club organized multiple protests, including an event on International Long COVID Awareness Day, as well as a rally outside the Berlin House of Representatives. The group compiled more than 20 pages of testimonials from patients about their inability to access care and sent the document to journalists and politicians.
Some U.S. state health departments have conducted research and run programs related to Long COVID, and advocates have played vital roles in these programs. Minnesota’s Long COVID program was threatened by state Republicans during the budgeting process this spring, but local advocates pushed back and successfully saved the program.
Provider education: Closing the knowledge gap
Standard medical education does not teach much about infection-associated chronic conditions (IACCs) like Long COVID and ME, contributing to underdiagnoses, inadequate treatment, and medical gaslighting. Some advocates are working to close this knowledge gap.
The ME advocacy group #MEAction has led multiple medical education efforts since launching in 2015. In its early years, the organization developed a continuing medical education (CME) class centered on the documentary Unrest, which depicts #MEAction co-founder Jennifer Brea’s struggle to receive a diagnosis and care.
#MEAction’s efforts to promote the CME included a multiyear “Postcards to Doctors” campaign in which hundreds of volunteers sent over 6,000 postcards; the campaign helped spur over 700 providers to take the Unrest CME, according to #MEAction. To reach medical students, #MEAction created a study aid on IACCs, which are now recommended by the CDC.
In 2022, #MEAction launched a new provider education effort through a partnership with Mayo Clinic. Through the subsequent “Teach ME, Treat ME” campaign, #MEAction organizers worked with state and local ME groups to set up 20 educational events promoting the resulting Mayo CME course. “We were giving the community more ways to engage that’s not just lobbying or sharing their personal stories,” said Adriane Tillman, communications and campaign strategist for #MEAction.
“Teach ME, Treat ME” led to over 400 clinicians receiving education on the disease. And #MEAction and Mayo found, in an analysis to be published in an upcoming study, that the education efforts led to more Mayo practitioners correctly diagnosing ME.
Stephanie Grach, Mayo Clinic internist and research chair for fibromyalgia, ME, and POTS, who has served as a lead collaborator with #MEAction, said that since “Teach ME, Treat ME,” she’s seen more practitioners, both inside and outside Mayo, giving ME patients better guidance. Other physicians’ referral notes to her have “more discussion about pacing … instead of the historical guidance about incorporating more exercise.” Grach said, “When we elevate the base of knowledge … that really helps facilitate the acceleration of care.”
When we elevate the base of knowledge … that really helps facilitate the acceleration of care.
Stephanie Grach, Mayo clinic internist and lead collaborator on “Teach ME, treat ME”
Mutual aid: “Meeting our needs outside of institutions”
Mutual aid is a form of voluntary, non-hierarchical collaboration to share and distribute skills and resources. Among COVID-conscious people, mask blocs have been the beating heart of mutual aid: distributing protective gear, facilitating COVID-safer socializing, and serving as platforms for further organizing.
Mask blocs often describe their work as filling gaps left by the state. “We are … trying to meet our needs outside of the institutions that are actively hostile to our existence,” said an organizer with COVID Safe Colorado.
The groups’ central function is distributing high-quality masks through methods including home deliveries, mail orders, and stocking drop-off points. Like clean air groups, some blocs also have lending libraries of devices such as air purifiers, and help build community by organizing events.
“For me, as a Black person from the South … mutual aid has always been necessary for our survival in the midst of state violence and neglect,” said a COVID-conscious community member who has organized with Triangle Mask Bloc.
Other organizations carry out other forms of mutual aid, or help build support networks. The LongCovidAidBot X account provides a virtual mutual aid space where people with Long COVID can share needs and support each other directly. Platforms like Long COVID Solidarity and Co-Resting, and communities like the Long COVID Collective, connect people with Long COVID, ME, and other energy-limiting illnesses to each other.
Direct action: A challenge when energy is limited
Mutual aid is also a form of direct action, in which people use their power to try to directly achieve their goals (in contrast to indirect methods, such as asking elected officials to act). Others include strikes, pickets, and forms of civil disobedience, such as blockades or occupying a public space.
The HIV/AIDS activists of ACT UP famously engaged in high-profile direct actions, such as wrapping the home of an oppositional senator in a giant condom. While ACT UP used multiple tactics, many have credited its use of direct action as key to its success.
But such actions are not possible for many people with energy-limiting chronic illnesses. “When people say we should be throwing coffins in front of the CDC,” said #MEAction’s scientific director Jaime Seltzer, “they’re not aware … of the incredible toll that in-person protest takes on participants.”
Sam Pearce, an activist and South African representative to the World ME Alliance, said, “The reason we’re not doing [actions like ACT UP’s] is because most of us are just far too ill.” Pearce has written in The Sick Times calling for less severe patients to take action on behalf of the most severely ill.
Still, some groups do carry out direct action. #MEAction, which was partly modeled on ACT UP, organizes annual #MillionsMissing protests that have included activists lying in front of the White House and laying out shoes in public spaces to symbolize “missing” people with ME. #MEAction’s New York chapter also organized a campaign to protest Columbia University’s conference invitation to a discredited doctor who has peddled unscientific “psychomatic” theories of ME and other chronic illnesses.
In Austin, Texas, Clear the Air ATX dropped a banner reading “Long COVID is a public health emergency!” over a busy highway on Long COVID Awareness Day this year. “People … don’t understand that this is a collective issue they are a part of,” KD Drackert, one of Clear the Air ATX’s founders, told Deceleration.
And Pearce and other South African activists, including SICK Pride co-founder Mlindeni Gabela, have organized SICK Pride events at a public park in Cape Town, which “was about making us visible in a way that wasn’t going to disable us,” Pearce said. “We can’t march, but we can lie down in a park and take up space.” The third annual SICK Pride event will take place on November 16.
We can’t march, but we can lie down in a park and take up space.
Sam Pearce, ME activist
Want to get involved?
Here are some tips for getting started:
- Understand the landscape. Before starting something new, “Go looking around and find out what’s already there,” said Seltzer. “Make sure that you’re not replicating work that [already] exists.”
- Help is available. If you do want to start a new group, ask for advice and use existing resources. Want to start a mask bloc? Talk to existing mask blocs and check out the How to Start a Mask Bloc zine.
- No action is too small. “You don’t have to be part of an organization to do something that’s really helpful to your community,” said the Triangle Mask Bloc member. “If you want to [distribute] masks and you have a connection to your local library, you can try to do that there.”
- Work together. There is power in numbers; there is power in movements. “If we want to get care and support for our communities, the only feasible way is to work in the largest coalition possible,” said Ben HsuBorger, #MEAction’s U.S. Advocacy Director. “All of us may have very different stories about how we became disabled … but the social structures that are limiting our access to resources and healthcare oftentimes cross diagnoses.”
“Coalitional grassroots movement building is actually the only thing that will really sustain us in the long term,” said Kane, of Long COVID Justice.
Chelsea Rudman is a writer with Long COVID who lives in Maryland.
Editor’s note: Berlin Buyers Club founder Sophie Dimitriou also recently wrote a reported story for The Sick Times about a specific issue within Germany’s health and pension systems.
Editor’s note: The Sick Times collaborated with Long COVID Justice to develop the Long COVID Essentials resource sheets. Our newsroom operates independently of financial supporters.
All articles by The Sick Times are available for other outlets to republish free of charge. We request that you credit us and link back to our website.
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[…] Mutual aid and community-based organizing are more important than ever. Look to this map for a non-comprehensive list of mutual aid groups across the country, as well as your local mask bloc for ways to plug in. […]