Over the holidays, I bumped into a friend I hadn’t seen in a while on the outdoor patio of a party, and was naturally curious to know what was new in his world.
“I have Long COVID” he said.
Sadness began to weigh on me as he disclosed that the brain fog he’d suffered since his second COVID infection had left him unable to work more than a few hours a day. He was planning a leave of absence from his job. Just months ago, I’d seen him practically glowing after his wedding here in San Francisco.
“Me too,” I said.
Like me, my friend is in his 30s and was fit and healthy when he got Long COVID. Like me, he had the much-vaunted “hybrid immunity” of all the vaccines plus previous infection. Like me, he feels abandoned by the leaders of our government, from the most progressive politicians to the most conservative, who seem intent on maintaining the façade that COVID is “over” and that things are back to “normal.”
The problem is, it’s not true. We are not back to normal.
My own Long COVID set in after my third infection in December, 2022, bringing with it debilitating fatigue, a constant sore throat, high blood pressure, high cholesterol, exercise intolerance, and other symptoms. To cope, and with only begrudging approval from doctors, I researched off-label uses of different medications, some of which eased my symptoms and helped me keep working. I wrote about what helped in case it helps others.
Many people in my life in San Francisco have since confided in me that they, too, suffer post-COVID conditions, from persistent pain in the lungs to fatigue to heart problems. I recently joined a Long Covid support group at work and found many others suffering and hoping for a cure like me.
Back in the Midwest over the holidays, almost everyone I told about my Long COVID had their own stories. A neighbor I bumped into at the DMV told me that she and three of her friends have Long COVID. The building manager where my mom lives says her memory is shot and she’s always out of breath. The neighbor who cares for my mom’s cat has lost her sense of smell entirely. My uncle has fatigue and brain fog. My aunt couldn’t taste the food at dinner.
What are we doing?
Besides us patients, there’s another group of people that doesn’t think things are back to normal: researchers who study Long COVID. The UCSF Department of Medicine recently hosted three of the nation’s leading researchers, including UCSF’s own Dr. Michael Peluso, for a discussion of the latest research.
The researchers noted several alarming findings, including that people with “mild” COVID infections remain at greater risk for two dozen different health problems two years out from their infection; that the risk of damage from COVID is higher than the flu in every organ system except the lungs; and that each re-infection increases your risk of developing Long Covid. A major study from the Canadian government last month put the chance of Long COVID after three infections at 38 percent. 38 percent!
The researchers also noted that more than 100 studies now show viral persistence, including in some people without Long COVID symptoms. Viral persistence means, as Dr. Peluso states, “at least pieces of the virus persisting beyond the first couple of weeks when we would expect them to go away.” Dr. Peluso, who started his career as an HIV researcher, said, “The scale of Long COVID is huge and is on par [with] HIV.”
I was so shaken at the beginning of my Long COVID journey that I felt an obligation to engage the democratic process to help others and prevent more people from suffering like me. I pulled together every scrap of energy I had and wrote a detailed letter to San Francisco’s State Senator, Scott Wiener, hopeful that I could reach him as a fellow gay man, and as a legislator who speaks of the lessons of HIV, of the responsibility to help the marginalized, and of California’s “history of acting when the federal government is moving either too slowly or not acting.”
I’m sorry to say that, after a year of email exchanges with Wiener’s office, I was notified last month that he would not take any legislative action on Long COVID in 2024.
I had done everything I could think of. I told my story, provided research, linked the issue to the senator’s stated values, and offered thoughtful policy ideas hoping something would stick—masks in health care settings so people don’t get sick from going to the doctor, or something as simple as vaccine reminders. I connected his office to Dr. Peluso, who stressed California’s dire need for more funding of Long Covid clinical care. I told the senator that I was worried about the young Long COVID sufferers contemplating suicide on social media, pointing out one of his own constituents in San Francisco.
Scott Wiener did nothing. No one from his office bothered to reach out to Dr. Peluso. The senator’s office says he won’t put forward any legislation because he is uncertain any bill could pass. This despite his vow to try to legalize psychedelics for a fourth time in 2024.
It’s extremely taxing for Long COVID sufferers to advocate for ourselves while trying to keep our lives together. Yet we advocate. “Democracy doesn’t work” shouldn’t be the lesson going into 2024.
Galen Panger lives with his partner in Noe Valley and works at Google as a user experience researcher. He received his Ph.D. from the School of Information at the University of California, Berkeley, and his Bachelor’s in Public Policy from Stanford University.
