Conferences and advocacy events for IACCs must require masking

Advocates, clinicians, and researchers must prioritize prevention and demonstrate the gravity of infection-associated chronic conditions like Long COVID by providing and wearing masks at public events.

Audience members at a conference wear masks while watching a presentation. — Luis Quintero / Pexels

When I was diagnosed with myalgic encephalomyelitis (ME) in 2019, after nearly twenty years of symptoms, I was outraged by the lack of treatments and support and I was determined to advocate for better care. I registered for advocacy week with Solve ME and co-founded the MEAction Maryland State Chapter.

I met with my representatives each year from 2020 to 2022, when advocacy week meetings were virtual. In 2023, I signed up for in-person meetings — but when I learned that masks would not be required, I switched to virtual attendance. I refused to use my limited energy and risk infection advocating alongside people unwilling to make meetings safe and accessible. After seeing maskless photos from in-person events, I stopped signing up for the advocacy weeks.

Many people with ME risk permanent deterioration to participate in advocacy. The least organizers and science conferences can do is protect us from further disablement from preventable infections by requiring masks.

My online community is full of masked faces, wheelchairs, walking sticks, ostomy bags, feeding tubes, central lines, and other medical devices. I want to see this reality reflected at in-person events and medical conferences.

Advocates, clinicians, and researchers who work with infection-associated chronic conditions (IACCs) must demonstrate the gravity and urgency of preventing these highly disabling diseases and provide meaningful access and inclusion for those most affected by modeling proper mask wearing and requiring masks at events.

Depending on the location of events, organizers may not be able to legally require masks, but they can do more to encourage their use. For example, if an event is held at a hotel where staff are unmasked, organizers and speakers can mask and inspire attendees to mask up, too. One line of text on a poster or in an email saying “masks encouraged” is not enough for meaningful harm reduction, accessibility, and inclusion.

One line of text on a poster or in an email saying “masks encouraged” is not enough for meaningful harm reduction, accessibility, and inclusion.

Many people and institutions refuse to acknowledge that the COVID-19 pandemic is still raging. Our leaders say “we have the tools” to manage COVID-19 while defunding drug and vaccine development, failing to reach vaccination targets, and dismantling surveillance.

With no systemic support, people living with these conditions rely on advocacy organizations to lead by example and protect them against infections. IACC organizations must create risk communication plans with input from people with lived experience. COVID-19 is still circulating, and infectious diseases have always left people with permanent disabilities and chronic conditions following acute infection. Organizers for advocacy events and medical conferences should assume that people who are high-risk will be present and require well-fitting, high-quality masks for all participants who are able to wear them.

Still, many advocacy groups have posted public photos that show them failing to implement these best practices. The Ehlers-Danlos Society, Immune Deficiency Foundation, and Dysautonomia International have posted photos of advocates in crowded indoor spaces without masks or visible airborne protections.

One common excuse I see from these organizations is that they are following Centers for Disease Control and Prevention (CDC) and World Health Organization (WHO) guidelines. However, even with minimal transmission, WHO recommends the use of masks when people are in crowded, enclosed, or poorly ventilated spaces and for people at high risk of severe complications. And CDC guidelines state that people with disabilities may be more likely to get very sick from COVID-19.

Organizers often say that they ask those who are sick to stay home — but this ignores the fact that many SARS-CoV-2 infections are asymptomatic and contribute to transmission. Masks are the best tool we have to prevent airborne infections, with research showing that N95 masks are highly effective when worn by the infected person. And any mask is better than no mask.

Rather than providing meaningful inclusion at their conference in Houston in July, Dysautonomia International suggested that attendees eat alone in their hotel rooms or register for the livestream as alternatives to being around unmasked people. Similarly, attendees at the 2025 National Institutes of Health’s RECOVER-Treating Long COVID workshop were forced to sit on the ground outside the hotel to eat, as the conference failed to provide any outdoor seating options and did not require masks indoors.

The website for the ISLC-PAIS Conference held in August 2026 in Amsterdam claimed to “provide a COVID-safe environment,” but some people with Long COVID were disappointed after seeing photos and videos where many participants appeared maskless. Alongside measures to clean the air, the conference provided masks but did not require them.

The EDS Society held its Global Learning Conference in Dallas in July and posted a photo to Instagram with hundreds of attendees and no masks. I was fuming when I saw the photo, thinking about the unnecessary risk and high likelihood that people with EDS would become further disabled if they contracted an infection at the conference.

This isn’t an irrational fear. My friend and fellow ME advocate, Sammy Lincroft, passed away at age 25 due to an infection she contracted while living with Severe ME. Melinda Lipscomb, who co-founded and co-chaired the MEAction Maryland State Chapter with me, was forced to withdraw from advocacy after acquiring COVID-19 at a medical appointment, which drastically worsened her baseline function. We are losing incredible advocates to death and further disability.

Christina Doherty said she and her mother caught COVID-19 from attending the EDS Society conference in 2024. “I felt like I was lulled into a false sense of security,” Doherty told me. She wished that masks were visible and provided at each table, rather than hidden behind a desk.

Christina Doherty said she and her mother caught COVID-19 from attending the EDS Society conference in 2024. “I felt like I was lulled into a false sense of security,” Doherty told me.

Better protections are possible. MEAction required masks indoors for their 2026 Millions Missing events. Alice Wong, founder of the Disability Visibility Project, was unable to mask the last few years of her life due to a tracheostomy. She advocated for masks in healthcare and wrote, “Masking up could save my life.” After her passing in 2025, Wong’s celebration of life ceremony required masks, tested attendees at the door, included ASL interpretation and closed captions, provided livestream access, and shared resources for increasing accessibility at events, including for making in-person gatherings less likely to perpetuate transmission.

Reducing risk is important for protecting those most vulnerable, but the reality is that everyone is at risk of Long COVID, and reinfection increases that risk. Researchers and clinicians are devaluing the lived experience of people living with IACCs, excluding those most affected, and contributing to the stigmatization of masking when they refuse to practice infection protections. Seeing maskless faces lecturing about the highly disabling nature of Long COVID and ME undermines their message, as we saw at the 2024 Senate hearing.

I am appalled that some of the leading experts studying and treating Long COVID are unwilling to change their behaviors to reduce transmission and protect themselves. They seem to believe that they are immune to the devastating outcomes that they see every day. We already face an alarming lack of researchers and physicians focused on IACCs — I fear losing providers and researchers to the disabling effects of the diseases they study.

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Some organizations, such as the Long COVID International Conference, frame preventing infections as a “personal choice.” The November 2026 conference recommends testing and says, “Masks are optional but encouraged.” Organizers describe this as “a respectful and inclusive environment that supports personal choice.”

I’m frustrated that preventing infections is called a “personal choice” and “individual responsibility.” I choose to wear a respirator in public spaces and this choice reduces my risk of infection, but masks work best at preventing infection when everyone wears them. When my partner and I ask others to briefly use protections we have been practicing for years, we are often met with resistance or avoidance. We must reframe masking as an act of care, rather than a matter of preference.

I imagine a future where providers and organizations serving disabled and high-risk people effectively communicate and enforce layers of protections against airborne infections. Those should include providing and requiring well-fitting masks, using air filtration and air disinfection, opening windows, holding events outdoors, monitoring CO₂ levels as a proxy for ventilation, and requiring serial testing before attending. Organizers can also provide and encourage the use of other evidence-based precautions like hand sanitizer, nasal saline rinses, and mouthwashes.

Ignoring the risk of long-term effects from infection will not make this problem disappear. Tens of millions of Americans are living with IACCs, and Long COVID is now the most common chronic disease in children. There are no Food and Drug Administration–approved treatments for ME or Long COVID, which leaves prevention as the best option for limiting the long-term effects of infection. Providing and wearing high-quality masks at IACC events will demonstrate the magnitude and severity of the long-term effects of infection while contributing to harm reduction.

Masking is not a burden, it is an act of love.

Providing and wearing high-quality masks at IACC events will demonstrate the magnitude and severity of the long-term effects of infection while contributing to harm reduction.

Whitney Fox is a Baltimore-based disability advocate and writer living with ME. She is currently writing a memoir exploring her journey navigating ME, hEDS and complex comorbidities. You can find her on Instagram.

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