Siobhán Donohue

Advocacy isn’t posting. It’s doing. I’ve stayed quiet at times because I hate the spotlight. I don’t want to be here. I want to play tennis with my daughter. I want to take the mask off, take my wife on a date, and not think about any of this. But I can’t unsee what I’ve seen. And I can’t unhear what I’ve heard. I’ve spent over 1,000 hours listening to people with Long Covid. Every story. Every symptom. Every dismissal. Every collapse. Everything. And once you understand how this actually works, how it dismantles human functioning, and how individuals have dismantled awareness of this disease and its prevention, you don’t get to walk away. Let’s get something straight about advocacy. Advocacy is not clout chasing. It’s not selling protocols. It’s not cosplaying as a clinician. It’s not gatekeeping illness categories. It’s not belittling patients. It’s not blocking people who ask hard questions. And it’s definitely not showing up for a day or a month of awareness and disappearing the rest of the year. Advocacy is doing. What have I actually done? I’ve written to professional organizations across behavioral medicine, cognitive science, and education pushing for masking, remote accommodations, and evidence-based guidance. I’ve drafted letters supporting disability claims grounded in scientific evidence. I’ve advocated for children and families facing harassment for masking. I’ve spoken at school board meetings. I’ve created templates for families navigating unsafe environments. I’ve directly contacted educators, administrators, policymakers. I built an Illinois Air Quality Dashboard linking indoor air quality, absenteeism, and public health risk. I’ve developed tools for people trying to stay safe in an environment that has abandoned prevention. I submitted a PCORI grant to center patient voices in research design and to build infrastructure for trials. 50+ hours of work. No guarantee of funding. Still did it. I don’t have Long Covid. This work pulled me away from my primary research area. It complicates my career. It costs time, energy, and honestly, peace. I haven’t earned a cent from Long Covid. I’ve been asked to join podcasts. I declined. I’ve been asked to write for organizations. I declined. I’ve been asked to lead grant efforts for trials. I declined. If I don’t clearly see how people with Long Covid benefit, I don’t invest my time. If I detect conflict of interest, I decline. But I have stayed here because I know how to evaluate evidence. I know how to build systems. And I’ve listened long enough to know who is being failed. There are people out there who are ignored, misdiagnosed, talked down to, sold false hope, or told this is all in their head. That part, I won’t tolerate. What’s broken right now? We have grifters selling snake oil. Researchers collapsing distinct conditions into convenient narratives. Professionals minimizing or dismissing patients. I’ve stepped back from certain spaces because many of them are no longer centered on patients. At the same time, prevention has been erased. The disease itself is being erased. Both ends of an aerosol-transmitted disease. Same result. And during moments where there should be unity, there’s fragmentation, ego, and noise. The reality? Entire countries are redefining conditions in ways that blur critical distinctions. People without medical training positioning themselves as authorities. Patients being told not to protect themselves. And here in Illinois, we’re fighting just to get basic clean air education and AQ monitors into schools. A bill that might not even survive. I’m not here to build a following. I’m not here to sell you something. I have donated to individuals and even helped raise over $1k for a charity (although, I'm not entirely sure to what extent that really helps families with LC). I’m here because prevention matters. And patients deserve better. And the truth still matters, even when it’s inconvenient. I’m continuing this work through infrastructure, tools, advocacy, and direct support. And I’ll be putting more of my own money into it. I’m building something called LANTERN. More on that soon. If you call yourself an advocate, ask yourself this: What have you actually done to make someone safer, heard, or better supported? Not talked about. Not posted about. Done. This space doesn’t need more voices. It needs more people willing to do the work.

Enormously massively huge studies have shown that each wave of Covid infections causes damage to people's immune systems. The science is incontrovertible. And yet you will not find a single media article about the current meningitis outbreak that mentions that.

I run a small business. We're a Covid conscious company. We: 🏠 Minimise working together (allow WFH) 🔲 Monitor CO2 🌪️ Have air filtration on timers 😷 Provide 3M Aura masks 🧪 Have LFTs (& will buy them) 💷 Provide paid sick leave for isolation/illness It's not hard. 1/🧵

1. Sometimes, the absurdity of the situation we're all in just hits me. Going forward, ongoing and continuous transmission of SARS-CoV-2 will lead to an ever-increasing percentage of the global population developing chronic illnesses due to sequelae of infection.

Six Years and Six Winters Without Getting Sick I haven’t been sick since 2018. No flu. No colds. No COVID. Nothing. Same for my wife. Same for my son. Six winters. Six holiday seasons. While people around us got hammered by one infection after another, we stayed healthy. There’s no fucking secret. We wore masks, everywhere. Not those useless blue surgical masks that leave gaps the size of freight trains around your cheeks. Not the limp cloth things that might as well be made of tissue paper. Real respirators. N95s and KN95s that actually seal to your face and filter the goddamn air you breathe. Here’s what they don’t tell most: There’s a significant difference between a mask and a respirator. A surgical mask is just fancy fabric that catches, well, spit. An N95 has an electrostatic charge that grabs particles and holds them. Think about rubbing a balloon on your head and watching your hair stick to it. That’s the science working to keep viruses out of your lungs when you breath, instead of letting them waltz right in. I know a nurse. Seventy-three years old. She worked in a busy family practice through the worst of the pandemic. Small exam rooms. Sick patients all day long. She wore an N95 every single shift until she retired last year. Guess what? She never caught COVID. People want this to be complicated. They want it to be about genetics or expensive supplements or some elaborate wellness routine they can sell you. Most of the time, it’s not complicated at all. If a virus spreads through the air, the air you breathe is where the battle happens. A properly fitted respirator changes everything. Can’t take vaccines? Mask up. Immune system issues, well now you have an option, for many viruses. Once I found masks that actually fit my face (Dräger X-plore 1950 for me ), the discomfort I’d imagined just wasn’t there. I can talk, walk, shop, and travel without constantly fiddling with straps. Half the time I forget I’m wearing one until I catch my reflection somewhere. But here’s the real reason I keep doing it. Millions of people are living with Long COVID right now. They’re carrying damage to their hearts, blood vessels, brains, and immune systems. For them, another infection isn’t just a shitty week in bed. It’s another step toward disability. More pain. Another organ system pushed past its breaking point. They can’t afford to get hit again. When I put on a mask, I’m not just protecting my family. I’m breaking transmission chains that could lead straight to someone whose body is already hanging by a thread. The cashier at the grocery store. My neighbor. The person standing behind me in line whose immune system can’t take another round. We’ve normalized getting sick. People shrug and say everyone’s down with something this month. Everyone caught the latest bug going around. That’s one way to live, I guess. Another way is to admit we have tools that work. Simple tools. Effective tools. Tools that can cut your risk of infection dramatically. My family chose the second way. It’s not heroic. It’s not perfect. It’s just looking at what repeated infections do to people and deciding that wearing a piece of filtered material over my face in crowded spaces is worth it. You want to know how we’ve gone six winters without getting sick? That’s the answer. We wore real masks for ourselves and for all the people who can’t survive another hit. The science works. The question is whether you’re going to use it.