Opinion: Is it time for an ACT-UP for Long COVID?
https://48hills.org/2024/10/opinion-is-it-time-for-an-act-up-for-long-covid/
While I’m far from the only person worried about Long COVID and our society’s general inclination to look away and pretend it’s not there, people like me certainly feel badly outnumbered. It’s beginning to feel reminiscent of how people with AIDS and their loved ones felt circa 1986—and maybe it’s time for the same kind of response.
For those of you lucky enough not to have lived through that era, by the end of 1986, AIDS had killed nearly 25,000 Americans, but president Ronald Reagan had yet to speak the word “AIDS.” His press secretary had joked about it and the White House press corps laughed. While individual scientists were doing important work, the bureaucracies running the NIH and FDA seemed very much to be in business-as-usual mode. Because the casualties had largely been gay men and injection drug users, it seemed like no one with any power cared whether we lived or died.
So, a group of New Yorkers – mostly gay men – decided it was time to start raising hell. Calling themselves ACT UP, they disrupted the New York Stock Exchange and, as chapters sprang up nationwide, they staged protests that shut down the FDA and NIH. Eventually, people like Anthony Fauci began to see they had a point. I joined the Los Angeles ACT UP chapter in 1988 and ended up getting arrested half a dozen times in protests at the LA federal building, the County Board of Supervisors and the U.S. Capitol, among others. We won major improvements in HIV/AIDS care in the Los Angeles County health system, which cared for thousands of people with AIDS who had no health insurance. When I landed in San Francisco in 1993, I connected with ACT UP Golden Gate.
now, we’ve arrived at what seems in some ways like an eerily similar place. When needed precautions to curb a highly infectious airborne virus spurred frustration and political pushback, officials largely threw up their hands and gave up. Even measures that don’t involve mandates or restrictions on behavior have mostly either been dropped or never happened in the first place. (...)
If I sound alarmed, well, I am. As longtime readers may know, I have some first-hand experience with Long COVID, though in milder form than many experience. My January 2022 infection left me with peripheral neuropathy—painful nerve damage—in my legs and feet. It’s incurable and nearly impossible to treat, as conventional pain drugs don’t help. I will likely never live another day without pain and walking more than six or seven blocks at a stretch is a struggle. I used to enjoy hiking, but will probably never do it again. Still, I don’t have the more debilitating symptoms like crushing fatigue or dysautonomia—disruption of the part of the nervous system that controls automatic functions like heartbeat, blood pressure, digestion and breathing—that afflict some Long COVID sufferers. Lots of people have it way worse than I do.
We know that COVID can have lasting impacts on many parts of the body, including the brain. A recent study of 52 COVID survivors—about half with mild to moderate initial illness and half with more severe disease—found that compared to healthy controls, both groups “had a significantly higher score of cognitive complaints involving cognitive failure and mental fatigue” 27 months after their original illness, with no significant difference based on the severity of that initial illness. On a series of tests, researchers found “changes in brain function” that may explain the reported problems.
Just as scary, a study of people aged 65 and up just published in the Journal of Alzheimer’s Disease reports that “people with COVID were at significantly increased risk for new diagnosis of Alzheimer’s disease within 360 days after the initial COVID diagnosis.” This review of the medical records of over six million patients found that the risk escalated with advancing age. As with many of these long-term impacts, the mechanisms involved remain unclear.
Survivors of an initial SARS-CoV-2 infection also have increased rates of high blood pressure, now documented in multiple studies. High blood pressure increases your risk of deadly cardiovascular complications like heart attack and stroke.
I can’t help but wonder whether these issues have affected me, but there’s no way to be sure. My blood pressure, well-controlled for a dozen years with a very low dose of medication, began ratcheting upward about a year and a half ago, necessitating three medication adjustments since then. I’m also definitely more forgetful than I was, mostly little things like walking into a room and forgetting why I went there. But those things can happen to older people with or without COVID, and it’s hard to know cause-and-effect in a given individual.
But I sure as hell know I don’t want to get this virus again and risk these and other issues getting worse. Unfortunately, avoiding it is getting harder by the day, and neither government at any level nor public health authorities seem to care.
A RADICAL IDEA: DO WHAT WORKS
We know what to do. As Clean Air Club founder Emily Dupree and co-author Shelby Speier wrote in Sick Times in May, “We possess the technology to make public spaces safer. Studies show HEPA air purification and far-UVC lamps drastically reduce the number of airborne pathogens in a room and therefore lessen the likelihood of COVID-19 transmission. When combined with other layers of protection, these tools have the potential to finally make our shared spaces more accessible during an airborne pandemic.”
A key word here is accessible. Failure to address indoor air quality and other prevention measures makes public spaces seriously dangerous for those at highest risk, including the elderly, the immunocompromised and those with long-term health issues, including Long Covid.
Such simple, factual messages are rarely heard in official statements about COVID. “What I find the most frustrating about official handling of COVID and prevention is the lack of care, education, and honoring the science around COVID,” comments Clear the Air ATX founder and Long Covid activist Katie Drackert. “Telling people to ‘stay home when they feel sick’ for a virus that spreads asymptomatically? Well, they are just straight up ignoring science.”
• Remember: covid is not over, 50% of infections are asymptomatic, minimum 10% of infections end up in long COVID, re-infections wreck us, COVID spreads and moves like cigarette smoke, think of the people around you and you as people who are all day smoking, it becomes more visual to understand how COVID moves.
• There is no way to “train” the immune system because it is not a muscle. there is a common misconception that exposure to harmful germs strengthens the immune system. viral diseases like COVID, flu, measles weaken the immune system, leaving the possibility of lasting damage. The reality is that you don't build your immunity with repeated infections, vaccines strengthen the immune system by teaching it to recognize pathogens without all the risks. Focusing on infection prevention is key.
• Rapid antigen tests give many false negatives.
• Solving the pandemic was never in the cards for the capitalist world.
• Instead, the explicit goal of the ruling class has been to make the pandemic simply disappear from public perception. Any reminder of the existence of a highly-transmissible, highly-dangerous, mass-disabling disease could trigger panic, or worse: organized, militant labor action. Averting this crisis required a careful campaign of culture-crafting; the people themselves needed to become convinced that there was no reason to fight. Consent for protracted mass infection needed to be manufactured.
“The cold truth of the matter is that the motive behind COVID minimization is greed and social control. (…) Solving the pandemic was never in the cards for the capitalist world. Instead, the explicit goal of the ruling class has been to make the pandemic simply disappear from public perception.” Let Them Eat Plague! http://clarion.unity-struggle-unity.org/
#MaskUp #WearAMask #CovidRealist #CovidIsAirbone #LongCovid #YallMasking #DisabledLiberation #DisabilityJustice
.
Prof. Emily M. Bender(she/her)
Nate Gaylinn
Broadwaybabyto
gren
Mitch M
RedGlow
Kyzrati
Health Self Defense ❤️🔥😷
Andrew丨BUY INDIEPOCALYPSE
Esther Alter