Mar’s Pandemical Survival Guide 2.0
AKA how to (try to) survive a pandemic that capitalism wants you to ignore
About mar: a queer, gender nonconforming, chronically ill, neurodivergent, fat, mixed race, person of color trying to survive in an ableist, capitalist world. You can find more of their writing on their Instagram and Substack.
Mom–
I love you
I miss you
I wish this would have saved you
Content warning: parent death, illness
My mom was chronically ill and immunocompromised when the pandemic started. In the early days of the pandemic, everyone I was close to more or less was on the same page (we all need to do what we can to reduce the spread of COVID and protect each other), so I didn’t really post much about it and I just followed information closely.
As the years progressed, a narrative started to form that, for most people, vaccines were enough protection and anyone else could protect themselves further if they wanted to. This narrative didn’t sit right with me–my mom was still immunocompromised and she had antibody tests that showed that vaccines did nothing for her. Plus, I was starting to read about Long COVID and how people were still dying and developing new illnesses even if they were vaccinated.
In the fall of 2022, my mom caught COVID and never really got better. After a few months of worsening symptoms, she was diagnosed with Interstitial Lung Disease (ILD) in April 2023. Part of her treatment plan included putting her on even more immunocompromising drugs. Near the same time, the COVID-19 Public Health Emergency was set to end in May. I was scared for her life.
And so, I started writing this document for her. I had realized that I had more capacity and had been following information about COVID and mitigation tools much closer than she had. So I started writing and researching, so I could put together a guide for her to protect herself.
As I dug into the information available, it became even more clear that my mom wasn’t the only person in danger–we all are. So the document evolved into something that anybody could pick up. I shared the document with my mom first, in late April, so she could arm herself with as many mitigation tools as possible.
On May 11th, 2023, I shared this document publicly, on the same day that the Public Health Emergency ended. Here is what I wrote then as part of the introduction:
My goal is to compile the various information that I have been consuming in order to share it with people who do not spend as much time reading about the pandemic as I do. I have been using information listed below to protect myself and my family from COVID, as well as interrupting chains of transmission and reducing overall spread, which makes everyone safer!
In this re-release, my goal remains the same. While a lot has changed in the last year, a lot of the information remains the same. People are still dying from COVID, people are still getting Long COVID (and there is still no cure), and the best way to prevent these things are through layered mitigation measures. In this re-release, I did my best to update things in a way that the information won’t become outdated quickly.
Since I originally published this document, my mom died in November 2023. She was in the hospital seeking care and developed a hospital-acquired COVID infection. She died a few weeks later.
My mom deserved better. We all deserve better. And I believe that we can build a better world. We can protect each other, and we have to protect each other, because it is very clear that our government and current systems will not.
I am writing this document from a disability justice, anti-capitalist lens. If you aren’t familiar with disability justice, please check out these readings from Sins Invalid. Essentially, my worldview is that we are all connected (especially when we are considering an airborne, communicable disease), no body is disposable, and that we need to think of ourselves and our collective futures, rather than give in to capitalism’s never ending demands on our bodies and lives.
The Death Panel Podcast refers to the COVID normalization process as the “sociological production of the end of the pandemic.” In terms of the seriousness of COVID-19, nothing materially has changed to signal “the end of the pandemic.” Yes, we have vaccines, but the vaccines do not prevent most infections, protection wanes over time, and the majority of people in the United States do not stay up to date with the latest vaccine. Yes, we have medications, but many people still struggle to access them and the virus is mutating and evolving to evade protection (monoclonal antibodies are no longer used as treatment or post-exposure prophylaxis[1] because they do not work against current COVID strains and the same thing might happen with Paxlovid[2]). Overall, hundreds or thousands of people are still dying weekly in this country alone and millions have long COVID, which has no cure. The only thing that has changed is the government response and public perception of COVID. So I am writing this document as a way to combat the sociological production of the end of the pandemic, as the pandemic very much isn’t over.
This document really only refers to the COVID situation in the United States. I am very much aware that this is a global pandemic and that due to imperialism and capitalism there are disparities in access to COVID vaccines and medications, but as I am only one person (who is chronically ill with a full time job, working on this in my spare time), I do not have the ability to write about global COVID perspectives currently. Much of the mitigation tools section can be useful to anyone globally though.
Please don’t be intimidated by the length and breadth of this document; it is not meant to be read fully in one sitting! Use the outline on the left to navigate towards topics you are interested in (or use the find function–command/control + F to search specific words). The first section of this document goes through why COVID is still a problem that everyone should take seriously and the next main section goes through mitigation tools you can use.
From here on, green text indicates Mar’s personal experience or opinions
Text that looks like this is a link to another resource or website
If you still take COVID seriously and are well aware of the risks involved with this pandemic, you do not have to read this section. Feel free to skip down to the Mitigations or Resources sections!
If you no longer mask often/ever or think of COVID as “not a big deal,” please read this whole section!
The fact is that COVID is still killing and hospitalizing thousands of people in this country each week. But even if you survive and aren’t hospitalized from COVID, there is a lot of damage that COVID can do. Below is a list of some of the currently known outcomes. Be warned, this list is extensive and can be a lot to read in one sitting. Please pace yourself and take breaks if you need to, but I encourage you to read the whole thing so you are aware of what we are up against.
A lot of the above list touch on the topic of Long COVID, also known as Post-Acute Sequelae of SARS CoV-2 infection (PASC). Long COVID has various definitions (mostly differ on length of time required to diagnose long COVID), but the general idea is that Long COVID is a term for a wide range of health symptoms/issues/conditions that present or reoccur after a COVID infection.
Long COVID symptoms vary widely (many of them are touched upon in the list above), but can also fluctuate or relapse over time.[41] The World Health Organization estimates that 1 in 10 infections (not people, infections) will lead to long COVID.[42] The CDC estimates that 1 in 5 people who recovered from the acute stage of COVID have Long COVID.[43] But other studies have shown numbers that are much higher than 1 in 5 (70% in a Hong Kong study[44]). A Canadian study showed that almost 40% of people who reported 3 or more infections reported Long COVID symptoms.[45]
There is currently no cure for long COVID. Many people with long COVID cannot work (or have a reduced ability to work)[46] and have difficulties accessing care.
There are resources such as Long COVID Families and Long COVID Justice that support and advocate for those who have long COVID.
There are certain groups of people who are more likely to have adverse impacts of COVID and/or develop long COVID. These include older adults, people who are immunocompromised, pregnant people, and people with certain medical conditions.[47] Additionally, a lot of marginalized demographics are more likely to develop long COVID or have severe COVID–including women,[48] queer and trans people,[49] BIPOC (Black, Indigenous, and People of Color),[50][51] fat people*,[52] neurodivergent people,[53] and more. The reason for this is likely related to discrimination/bias/oppression that impacts health, along with more structural issues such as healthcare access.
Almost every medical condition or disability (including mental health conditions such as depression or anxiety) are included in the lists of people who are more likely to experience adverse impacts of COVID.
I know there are so many people out there who think of themselves as young and healthy (even if they may have some health conditions). But health isn’t as binary of healthy vs unhealthy. All humans have various levels of health that fluctuate (and ultimately generally decline) throughout life. So if you read this section and think, “I don’t have any health conditions, so I shouldn’t worry about COVID,” I beg you to reconsider.
You may have health conditions that are undiagnosed or you may develop health conditions after one (or more) COVID infection.
I used to think of myself as healthy. If you asked me a few years ago, I would say apart from some anxiety, I’m relatively healthy. But in actuality, I am chronically ill. In 2023, I was diagnosed with endometriosis (a chronic inflammatory condition that does put me at a higher risk of developing Long COVID), but I have had symptoms for over a decade. So I was never actually in the healthy category, I was just undiagnosed. As someone with a fluctuating health condition, I don’t take my good days for granted. I want to preserve my health and my quality of life as much as I possibly can and I want that for you too. If you currently do not live with any debilitating chronic conditions, I don’t want you to know what that’s like. I want everyone to learn more so they can reduce chances of developing long COVID.
*I want to be explicit that the ob*sity paradigm is damaging and based in bad science. While the medical industry believes that fat people are inherently unhealthy, this isn’t true. And while there are many studies that show correlation between higher weight and various health conditions, correlation is not causation and these studies do not control for things such as anti-fat bias in medical treatment (fat people are withheld care due to their size)[54] and the effect of weight cycling (the process of losing and gaining weight)[55] and dieting.
We know COVID can damage almost every organ and system in the human body. We do not currently have a cure for Long COVID or a way to heal the damage COVID can inflict on the body. Even if you have had COVID once and think it didn’t impact you much, it doesn’t mean that future infections will be mild for you. And even if you do not currently have long COVID symptoms, it does not mean your lungs/heart/brain/other organs weren’t damaged by the infection.
The only way to prevent Long COVID is to not get infected with COVID.
The way to not get infected with COVID is for everyone (or as many people as possible) to take COVID precautions and care for yourself and those around you. We need to think collectively and long term, not individually and short term.
A few questions you should ask yourself:
While the end of the Public Health Emergency and the eradication of all COVID protections in this country implies that COVID is less of a threat than it used to be, that simply isn’t true. What we are living through is the normalization of a higher level of death and disablement in order to pretend like COVID is over. In this section, I will go over how to stay informed about the current status of COVID so that we can understand how high the risks are for everyone.
Unfortunately, due to the end of the Public Health Emergency and the production of pandemic minimization and normalization by the state, it is very hard to tell how widespread COVID is at any given moment. Earlier in the pandemic, there was more widespread testing and mandatory reporting of cases, hospitalizations, and deaths in a more clear manner.
Almost all of these metrics have been dismantled over time and the information that is available has become more obfuscated and difficult to find or interpret. If you want more of a history and rundown of how this has happened, I highly recommend you listen to the Death Panel podcast, particularly the episodes “Covid Year Three,” “Economic Endemicity Blue,” and “Covid Year Four.”
So for this section, I will focus on the metrics that are still available and where you can look to see information about current COVID conditions.
Due to the lack of accurate case data, one of the more accurate ways to measure the amount of SARS-CoV-2 circulating is to measure the amount in wastewater. WastewaterSCAN Dashboard reports wastewater levels of COVID across the US.
What is an acceptable number of lives lost daily to this pandemic?
Currently, our government and public health agencies seem okay with hundreds to thousands dying weekly. In 2022, CDC director Rochelle Walensky said “the overwhelming number of deaths, over 75%, occurred in people who had at least four comorbidities, so really these are people who were unwell to begin with, and yes, really encouraging news in the context of omicron.”[56] Essentially, they value the lives of people who have disabilities or other health issues less than healthy, abled people. That lives like mine are disposable. We do not have to accept this level of death.
[In the end of 2023 and the beginning of 2024, there were 29 weeks in a row with over 1,000 COVID deaths. That’s over half a year where the death rate was over 1,000 deaths a week (and at least 5 of those weeks were over 2,000 deaths).[57]]
These numbers are not counting people who die from Long COVID or other post-COVID related conditions, such as heart attacks and strokes. So the true COVID death count is hard to capture. In fact, deaths from COVID have likely been far undercounted overall.[58]
Despite undercounting, COVID is the third leading cause of death in the United States, behind heart disease and cancer.[59] And heart disease and cancer are both umbrella terms for multiple types of illnesses with different causes, so in the top three causes of death, COVID is the only one that refers to a single disease/cause. And COVID is the only one of the three that is a communicable disease, meaning more collective protections could reduce the amount of deaths. Please keep reading this document so that we can work together to reduce these abhorrent levels of death.
If you don’t want to monitor wastewater levels yourself or rely on lagging indicators like deaths, then how can you stay up to date on information about spread?
The People’s CDC is a volunteer-run resource that creates a weekly “Covid Weather Report” where they report on available data to try to make sense of the current status of Covid.
Infectious disease modeler, JP Weiland has been using modeling and current wastewater and variant data to try to forecast what will happen with COVID spread. His predictions have been fairly accurate overtime. You can find his forecasts on his Twitter or Bluesky.
COVID is still a very big deal. It continues to kill and disable people every day. Our government has eradicated most protections and wants us to forget about COVID and just continue to work. While after reading this section, you may feel powerless and hopeless, I am actually more optimistic. I think that if more people are aware of what the material conditions are, that more people will come together to create safer communities. The next section goes through COVID mitigation measures that you can take to reduce the likelihood of getting and spreading COVID.
We do not have to accept the normalization of death and disablement that our capitalist system wants us to accept. We can come together to reduce the spread of COVID using a variety of tools outlined in this section. I hope this section can be a good starting point for you to implement mitigation measures in your life that will reduce the spread of COVID.
Despite some pervasive myths, masks do work and so do mandates.[60][61] This section will go over the best masking strategies you can employ to protect yourself and others. I focus on high quality masks (such as KN95, KF94, and N95 respirators) as they are more effective than surgical or cloth masks (but of course a surgical mask is more effective than a cloth mask and a cloth mask is more effective than nothing).
The best mask for preventing COVID (and other airborne disease) spread is a high-quality, fit tested respirator. Some very smart people have created DIY ways to fit test their masks at home. Essentially, the process is to aerosolize a bitter or sweet solution and see if you can taste it through your mask.
Here is a good guide on DIY fit testing.
In order to do fit testing, you should have a wide variety of sample masks in order to test which style/brand of mask fits your face best. Here and here are some websites where you can buy sample mask packs.
Elastomeric respirators are reusable respirators that are very high quality. Envo, Flo Mask, and 3M are three of the more widely used brands. For a lot of people, elastomeric respirators have a more consistent fit than N95 and other disposable respirators.
I have a Flo Mask and I like it. For me, I do find that condensation tends to build up, but I have been rolling up tissue paper and taping it inside of the edges of the mask and it fixes it for me. I find the Flo Mask useful for situations where I will be taking a mask on and off (such as running errands) because unlike disposable respirators, the fit doesn’t change with use. With disposable respirators, the nose piece might need to be readjusted or might not conform to your face as well after multiple uses, but the Flo Mask shape stays exactly the same.
N95s, KN95s, and KF94s are all high quality respirators. N95s and KN95s filter out over 95% of very small particles (about 3 microns in size), while KF94s filter over 94%. They all pass certain standards in their respective countries–US, China, and Korea. Since they all provide high levels of protection, fit and comfort are more important than type of respirator. Below, I will lay out some differences in types of masks that may help you figure out the best type of mask for you.
These are the main two ways that respirators can be worn. Headband style respirators tend to provide better protection than earloop for most wearers.[62] Headband style may also be more comfortable for people prone to behind the ear discomfort. However, others prefer earloops for comfort or ease in donning and doffing. N95s tend to be headband, while KN95s and KF94s tend to be earloop.
There are many different styles of respirators including bifold, trifold, duckbill, and more. Again, it is recommended that you try out many types and see which one fits best for you (using a DIY fit test would be ideal).
A lot of people find that the 3M Aura N95 (trifold) fits their face comfortably and studies have shown that the high majority of people (around 80-90%) pass fit tests with the Aura.[63]
Many others swear by the Gerson 3230 N95 (duckbill), often saying it is one of the most breathable masks. Personally, I love the Gerson 3230 for long masking days. I am aware that the duckbill style is one of the least aesthetically pleasing masks, but honestly the breathability makes it so worth it.
Since everyone’s faces are shaped differently, it is really important to find the masks that work best for you. R/masksforeveryone and r/masks4all are good resources to look for advice on choosing the best masks for you.
Readimask is one of the only strapless, metalless N95s. They have a medical adhesive at the edge of the mask that connects with the face. I don’t think it is a mask type that many people like to use for day-to-day masking, but it can be super important for people who need to have medical procedures where you cannot wear metal, such as an MRI. They have an MRI-safe statement that you can show healthcare workers so that you can remain safely masked during the procedure.
Make sure you wash your hands after taking off your mask to be safe. Disposable respirators can be reused a number of times (most sources suggest about 40 hours of use is okay), but it is often recommended to rotate them, giving a chance for any potential COVID on the mask to die before handling it again. One recommendation is to have a paper bag system where you can leave used masks in a paper bag for a number of days as you rotate through them.
Try to keep your mask on for the whole time while you are at risk of exposure. I have never understood people who mask, but then take off their mask indoors to eat slowly. If you absolutely need to eat or drink, I recommend moving part of your mask so you can access your mouth and try not to breathe until your mouth is covered again. For even safer drinking while masked, there are sip valves that create a safe way to drink liquids with a straw without unmasking.
I just want to end this masking section with some final thoughts on masking and a few other resources that don’t really fit into the sections above. Masking remains one of the most effective tools to protect yourself from COVID and disrupt chains of transmission. I really only am spending time on talking about respirators (as opposed to surgical and cloth masks) because they are really the best protection we have, especially considering that most people are not masking anymore.
Of course a cloth mask is better than nothing. And a surgical mask is better than a cloth mask. A cloth mask on top of a surgical mask is better than either alone. But a respirator (N95, KN95, KF94, or elastomeric) is way more effective.[64] And a fit tested respirator is the gold standard.
Personally, I have mostly upped my mask game as COVID has progressed. In all of 2020, I wore cloth masks (because the CDC told us not to mask at first and to save better quality masks for healthcare workers). In early 2021, I started to read about double masking and for many months, I wore a surgical mask under my cloth masks. After I got vaccinated in mid 2021, I stepped back a little and only wore a surgical mask (because I was working a new job in a hot bakery and couldn’t breathe well while double masking and I hoped that the vaccine would do more to prevent transmission). When Omicron hit, I made the jump to respirators and haven’t looked back. I started off wearing Powecom KN95s (headband style at work, earloops for running errands) and had a brief 3M Aura time, but eventually made the jump to my current Gerson 3230. In 2023, I bought a Flo Mask and mostly use that or the Gerson (with occasional KN95 use for convenience).
Over the past few years, COVID has only gotten more transmissible and fewer people are masking. So while a cloth mask back in 2020 may have helped save me from COVID against the original strain when I mostly was in uncrowded rooms with other people masking, but now that I am often the only person masking in a room and current variants are more transmissible, I have had to step up my masking.
If you feel bad about waste created from masking (and aren’t interested in reusable elastomeric respirators), check out mask recycling resources like this one. They accept disposable masks and filters through the mail. I used this resource and really like it! You do have to make a purchase from them, but after a single purchase, they do continue to accept masks for recycling that aren’t from them.
Unfortunately, there are counterfeit respirators out there, so be sure to buy masks from a trusted source. Some trusted sources are Project N95, Armbrust, Bona Fide Masks, and Be Healthy. If you are unsure if your mask source is legitimate, you may want to ask the mask nerds at r/masksforeveryone or r/masks4all.
I hope you know this by now, but it took the CDC and WHO way too long to admit it and then the message wasn’t necessarily spread to the general public.[65]
So since COVID is an airborne virus, ventilation and filtration of air is another really vital mitigation measure. Here are a few key points that may help demonstrate the need for air mitigation measures:
Ventilation is simply adding in fresh air to an indoor space. Simple ways of improving ventilation are opening windows and doors when possible and running fans.
There are also some HVAC system improvements that can be made to improve ventilation; energy recovery ventilators (ERV) and heat recovery ventilators (HRV) can be used to bring in outside air[69] and save energy.
It can be difficult to assess how well ventilated a space is compared to how many people are in it. One tool that can help with this assessment is a CO2 monitor, which measures the amount of CO2 in the air, effectively measuring whether ventilation is good or poor.
COVID advocates often recommend the Aranet4 brand. Some recommend this one as a cost effective alternative, but warn about the small battery life. Basically, if your monitor reaches a higher level, it can be a sign that there isn’t great ventilation in a space. So for the COVID cautious, that may be a sign to open windows/improve ventilation if able, or to leave the space if possible/necessary.
Ventilation is about how much fresh air is coming into a space. Now, filtration is about the cleaning of air in a space. There are a couple of ways to reduce the amount of COVID and other viruses in the air by filtering it.
A building’s regular HVAC filtration (assuming the filters are at least MERV 13 and are changed at the appropriate intervals) can help reduce the amount of virus (and other indoor air pollutants) in the air. However, most HVAC fans are set to “auto,” which means they only circulate and filter air when the heating or cooling kicks on. So if you want to utilize HVAC filtration, turn the fan to “on” so the air continuously goes through the system’s filter.[70]
You can also buy air purifiers with HEPA filters to help clean the air. Our household uses the Coway Airmega purifier and the Levoit mini purifier. We also have a portable air purifier for travel. Make sure you change the filters regularly and an added bonus is that they can help with allergies!
If commercial air purifiers are too prohibitively expensive, some really ingenuitive people have come up with more affordable ways of effectively cleaning the air. Essentially, Corsi-Rosenthal (CR) boxes are cubes where four sides are HEPA filters and the top is a box fan, so it pulls air through the filters. Materials for these boxes are fairly inexpensive (essentially the cost of filters, box fan, and tape) and there are many guides out there including this one.
There are also other brands like Clean Air Kits that sell DIY air purifier kits. These ones use PC fans, which makes them even quieter than using box fans. I have the six fan Brisk Box in my house and it works really well.
A newer technology that can help reduce the spread of COVID is Far UV-C, a form of UV light that quickly inactivates viruses, but is safe for humans[71] (other types of UV light have been used to kill viruses, but are not safe for humans to be in contact with).
Far UV-C lights work quickly and effectively, studies show that they can reduce the concentration of pathogens by over 98% in about 5 minutes.[72] They do produce a small amount of ozone, so Far UV-C should be used in tandem with ventilation.
Unfortunately, since this is a newer technology, it is both very expensive and there isn’t a lot of good information about how to pick the best UV-C lights. I have heard good things about Nukit Torches and products from Far UV Technologies.
Testing is another vital mitigation measure. Since COVID is transmissible before symptoms and during asymptomatic infection, testing can help reduce spread. Also, rapid testing can help identify when someone is no longer contagious after an infection. Additionally, if you were to get sick with COVID and end up with long COVID, it may be important to have a documented positive test in order to receive treatment or support.
PCR testing is the more sensitive/accurate type of COVID test. Most PCR testing is done at a pharmacy, doctor’s office, or testing site and results are available in 1-2 days. It usually entails a shallow nasal swab. Many places have closed testing sites, so pharmacies and doctor’s offices may be the way to go in the future.
Rapid antigen testing is less sensitive than PCR, but can be done at home and results are available within 10-30 minutes, depending on brand. Some insurances still cover the costs of rapid tests each month, but be sure to check your plan.
Rapid tests basically detect the virus that is shedding, meaning you can use rapid tests to find out when you are no longer contagious after infection. For this sort of use, when you start testing negative, you should test again in 24-48 hours and get another negative result before assuming you are no longer contagious. If your rapid test is still positive (even a very faint red line), you should assume you are still contagious.
Nucleic Acid Amplification Testing (NAAT), or molecular testing, is another type that can be done at home and give results quickly, like a rapid antigen test, but has an accuracy that is closer to PCR testing.
These tests are generally more expensive than antigen tests, but are much more accurate. Brands include Metrix, Cue, and Lucira (Lucira also tests for influenza). I have a Metrix reader and tests and I definitely find them useful as part of my testing routines.
Vaccination is one of the best ways to reduce severity of COVID infection. While vaccines and boosters provide some initial protection against infection, usually that dwindles within a few months[74] (which is why many layered protection methods are recommended). In the past few years, there has been an updated vaccine released in the fall, which is recommended to everyone. Immunocompromised people and people over 65 are recommended to their COVID vaccine more than once a year.
If you have had a bad reaction to the MRNA vaccines (like Pfizer or Moderna), you may want to look into the Novavax, which is a protein based vaccine that tends to cause fewer side effects.
For immunocompromised people, vaccines might not be very effective. Immunocompromised people should talk to their doctors about getting more frequent vaccines or seeing if there are pre-exposure prophylaxis monoclonal antibodies available. These have been useful tools to protect immunocompromised people, but unfortunately due to SARS-CoV-2 continuing to evolve and mutate, there have been times where there are no monoclonal antibodies available to treat the current variants.
The bottom line is to stay up on your vaccines if you are medically able to, but vaccines do not stop the spread of COVID, so take other precautions as well!
The mitigation tools are generally well known and researched and were more broadly used and talked about in the earlier years of the pandemic. There are some other mitigation tools that haven’t been as broadly promoted outside of COVID cautious communities, so I want to share some information on them here. None of these tools should be relied on alone, they should be used in tandem with masking and other measures above.
There is evidence that Cetylpyridinium Chloride (CPC) mouthwash can reduce the viral load in saliva.[75] Reducing viral load can reduce the severity of the infection and likelihood of Long COVID. Crest Pro Health mouthwash contains CPC and is available at many stores. Many people use CPC mouthwash after potential COVID exposure. I use Crest Pro Health mouthwash after things such as traveling or dentist's appointments.
There has been research into various nasal sprays that have also reduced viral loads.[76] Types of nasal sprays include Iota-carrageenan[77] (such as Betadine Cold Defense Spray, Xylitol[78] (such as Xlear), and others. I personally use Xlear in a similar way as I do CPC mouthwash-before and after higher risk activities.
Oral probiotics may also reduce severity of COVID infections. Specifically, S. salivarius K12, has been shown to have the potential to help.[79] While more studies are needed, there are low risks to this tool, so some COVID cautious folks have added this to their routines by dissolving a K12 oral probiotic in their mouth before going to sleep.
There is some evidence that COVID can spread through the eyes, like through the virus landing in someone’s eye leading to an infection.[80] There are few ways to protect your eyes from this. One is to block your eyes with glasses or goggles. Stoggles are safety goggles that look more like regular glasses. They can also be used with or without a prescription. Another tool is eye drops that are shown to inactivate viruses, such as Lumify.[81]
I hope this has helped give you some tools to add to your toolbox. No single tool can prevent all COVID spread. We all need multiple layers of protection to reduce the overall spread of COVID. The more tools the more people use, the safer we all will be.
Even with all of the mitigation tools above, the risk for COVID infection is still high. If you find yourself feeling ill and/or testing positive, here are some best practices to try to reduce the severity of infection, prevent spreading it to others, and reduce the risk of developing Long COVID.
First of all, if you get sick with COVID, stay home! Please do not go out and about if at all possible. Over the years, the CDC guidelines have been whittled down to almost nothing. But the science hasn’t changed. Many people are still contagious after day 10 of infection and one of the best ways to check for contagiousness is to use rapid tests. You should test negative (no red line, not even a faint one) twice with at least 24-48 hours apart before you start acting like you are negative.
Fortunately, we have developed some medications that are effective at lowering the severe risks of COVID infection. So if you test positive (even if you feel okay), you should try to contact your doctor and see if there’s anything that can help you.
Paxlovid is an antiviral medication that stops the reproduction of COVID in the body. It is important to start taking Paxlovid near the onset of symptoms so you can stop the virus from replicating early in the infection. Paxlovid can reduce likelihood of hospitalizations and death[82] and possibly Long COVID[83].
Currently, Paxlovid is only recommended for patients who are at moderate to high risk for severe COVID. And even so, there are lots of anecdotal stories of people who have multiple risk factors being denied Paxlovid. If you have COVID and don’t have any medication or health reasons why you can’t take Paxlovid, you may have to self-advocate to get a prescription from your doctor.
There’s some evidence that COVID is mutating to become resistant to Paxlovid.[84] So far, these mutations aren’t so prevalent that it makes Paxlovid useless, but it’s definitely something to be concerned about for the future.
Metformin is a diabetes drug that has been linked to viral load reduction[85][86] and large reduction in the chances of long COVID.[87] Studies about metformin are more recent, so there aren’t any current recommendations from the CDC or FDA about use for COVID treatment. Hopefully this will change soon. If you have COVID and cannot take Paxlovid for some reason, it may be worth sharing these studies with your doctor and seeing if they will prescribe Metformin off label (as in, not for the FDA approved purpose).
There are a few other tools for COVID infection that I want to share:
It is becoming clear that rest is an undervalued tool when recovering from COVID. Overexertion during the initial COVID recovery phase can lead to Post Exertional Symptom Exacerbation (PESE) or Post Exertional Malaise (PEM).[90] A lot of people think/are told to increase physical activity to get better faster, but evidence is not showing that to be a safe/accurate recommendation. For those with Long COVID, physical overexertion can lead to many adverse effects.[91] And many Long COVID advocates posit that rest is one of the most important tools in dealing with, and even possibly preventing, Long COVID.[92] Even after you have recovered from a COVID infection, it is best to avoid strenuous workouts for many weeks.
COVID rebound is a relatively common occurrence where a COVID infection can reappear days to weeks after the initial infection ends. Early information about COVID rebound was misnamed “Paxlovid rebound,” which implied that people who took Paxlovid could have COVID infection return after they stop taking Paxlovid, but evidence shows that COVID rebound is relatively common, regardless of whether or not someone takes Paxlovid.[93] [94] Rebound infections can be symptomatic or asymptomatic and can be contagious. If you have recently recovered from a COVID infection, you should still mask and test before seeing anyone who is high risk.
Some preemptive responses to skeptics
I am well aware that my worldview of COVID is not the popular/mainstream view. But if you got through this whole thing and still aren’t convinced, or if you are convinced and need help defending this position against others, I want to try to anticipate and respond to some potential arguments.
That might be true and it might not be. There may be underlying damage that you are currently unaware of. If it is true the first or second time, it may not be true in subsequent infections. And even if you somehow will never get any adverse or long term outcomes from COVID, it is still a communicable disease and you may give it to someone who would not be fine.
As SARS-CoV-2 spreads in a space, it has an opportunity to spread further through each person that gets infected and carries it to more spaces. Every person who is wearing a respirator is potentially breaking those chains of transmission. The more people who take precautions, the safer it is for disabled/immunocompromised/high risk people to be out and about. Moreover, if you are involved with organizing/running a business/etc, then you can affect larger change by creating events or spaces that are safer for everyone.
I do live my life. And I want to keep living my life, as comfortably and healthy as possible. I already have one chronic illness, I want to avoid others for as long as I can. So I live my life with a respirator when I’m in public and I use frequent tests and air filters. I also don’t want to live my life in a way where my choices will get other people sick or killed.
The Biden Administration has been pushing this one. We have had lots of tools that I’ve talked about: masks, air quality, medication, testing, vaccination. They encourage people not to mask anymore. They haven’t done anything to improve ventilation and filtration. Medications have been useful tools, but we no longer have access to some of them (monoclonal antibodies are no longer used for treatment of active infection or post-exposure prophylaxis because they aren’t effective against current variants) and people have a hard time accessing others. For testing, testing sites have been closing across the country and people do not necessarily test and quarantine as much as they need to in order to reduce spread. The only tool that the Biden Administration has been pushing (while still questionably, as there low uptake on updated shots) is vaccines. Vaccines alone are not enough to protect people from death or disablement from COVID.
We do know of and have some tools. But most people/businesses/governments are not implementing any of them (except maybe vaccines). And none of the tools is 100% effective. So what I’m suggesting is that we take up these tools and use layered mitigation strategies to make ourselves and our communities safer.
Nobody is perfect. We should all try to do better and do as best as we are able to. For myself, I have always tried to stay on top of COVID precautions, but I know there have been times where I let my guard down. I have dined indoors publicly thrice in the pandemic, I have traveled multiple times, and I even got married during the pandemic which brought people from across the country together. I have tried to do any of these risky activities as thoughtfully as I could: I tested the week after dining indoors (and masked everywhere else I went), I wore respirators and brought a travel air purifier while traveling, and my wedding was fully outdoors. I wouldn’t do some of those things now–like dining indoors, a meal doesn’t seem worth risking Long COVID or other health conditions.
I am certainly not perfect and I don’t even use all of the tools I mentioned in the mitigation section all of the time (at a baseline, I mask with a respirator in all indoor spaces outside of my home). I offered up all of these tools, so that people take up whatever tools they can. The fact is that no one mitigation tool is 100% effective. Layered mitigation measures keep us safer. So the more mitigation measures more people take, the safer we all are.
Making a decision to take COVID seriously is one that comes up over and over again. You can decide tomorrow to put a mask back on even if you haven’t been wearing one. You can assess your individual risk, but I really hope if you’ve read this whole document that you realize you do not accurately know what your actual risk is (as anyone can get Long COVID or have immune system issues without knowing it) and that you should consider collective risks. If you and your friends take risks together, that is one thing, but if you choose to unmask at the hospital, pharmacy, or grocery store, you may be putting more vulnerable people in danger without their consent. Heck, even if you choose to dine in a restaurant or unmask in a bakery, there may be chronically ill workers in the back of house who are trying to protect themselves (like me from 2020-2023). So try to think collectively about your future and all of ours.
Here are some of the resources I have been using to stay informed. A lot of the information in this document came from these places and I really wouldn’t know this much without them. A lot of these resources also make me feel less alone in caring about pandemic safety still.
The Death Panel Podcast is a leftist podcast about the political economy of health. While some episodes are not focused on COVID, many, many are. Some episodes I recommend starting with are “Covid Year Four” and “Endemic Endemicity Blue.”
While there are many folks on Twitter and TikTok who share good COVID information, I personally don’t use these platforms. So I do rely on Instagram for some COVID social media resources/catharsis. Here are just some of my favorites:
Facebook has many “still COVIDing” groups that are very useful and active. There are groups based on demographics (young adult edition, LGBTQ+, etc) and geography. If you want to find those, I would search “still COVIDing” in Facebook groups and join ones you are interested in.
There are also many COVID cautious discord servers, including local groups. If you are interested in joining your local COVID cautious discord(s), try asking folks you connect with on IG or Facebook. Someone may be able to point you in the right direction!
As the state has removed COVID mitigation/safety resources, people have started to come together to keep each other safe! There are groups all across the world of people who are pooling resources and working to keep their communities safer. This COVID action map might be able to help you find an organization near you.
There are multiple types of organizations, but two of the main ones are mask blocs (which focus on distributing free respirator masks to their community) and clean air clubs (which focus on air purification, often for events). Some orgs do both of these things and others may have slightly different, but aligned goals.
Here are some examples of mask blocs:
Here are some examples of clean air clubs or people who provide air purifiers:
These aren’t complete lists of resources by any means, but they may be good places to start!
Okay, so this book doesn’t really talk directly about COVID. But it gives context for the status of our entire political system that has made COVID play out the way it did. Written by Beatrice Alder-Bolton and Artie Vierkant (of the Death Panel Podcast), this book is necessary political education for anyone who considers themselves a leftist or aligned with disability justice. You can buy it at Verso Books or check your local library.
Leah Lakshmi Piepzna-Samarasinha wrote this profound book about disability justice and how we can imagine our futures. This book does specifically talk about the COVID-19 pandemic and the impact on disability justice and how disabled organizers have been working to keep each other and us alive.
I know this document is a whole lot of information compiled in one place. I have tried to stay up on COVID information throughout the whole pandemic, but as I’ve talked to others, I realized that not everybody has that inclination or capacity. So I wanted to put together this document to hopefully make the information that I have been consuming more accessible to others. I sincerely hope you got something out of this and can implement it in your life. Feel free to share with others who might find this helpful.
I want to close by writing directly to those who are reading this who are comrades, folks who consider themselves anti-capitalist, leftist, socialist, anarchist, even progressives, etc.
For years now, I have seen a lot of y’all on social media doing things like dining indoors, socializing or going to events/meetings maskless, traveling maskless, etc. Can I just ask why?
Capitalism is the root driver of the sociological production of the end of the pandemic; capitalism wants us to forget about the dangers so we can go back to work without complaint, so that we go out and keep spending money, so that we don’t stop and imagine what would a better future look like? Capitalism teaches us to think individually: “I had COVID and I was fine, so I feel safe unmasking,” vs collectively: COVID is still killing and disabling people daily and the people who are most affected are some of the most marginalized.
I want you to think about the type of world we want to build. Beyond capitalism, beyond individualism. Do you want to live in a world where disabled and immunocompromised people have to isolate completely to remain safe? Where safety is only accessible for those with money? Or do you want to build a world where all spaces are more accessible? Do you want to live in a world where people are only valued by their ability to work and be productive? Or do you think that all people deserve to be valued, no matter their ability?
It’s important to remember that the top of the ownership class knows the threat of COVID. In the January 2023 World Economic Forum in Davos, where billionaires gathered, there were high COVID protocols in place: PCR testing connected to their badges (as in, if someone tested positive, their access badge would deactivate), COVID hotline for questions/concerns, free rapid testing available constantly, and HEPA and other high quality filtration and ventilation.[95] This was in 2023 when our government agencies told us to go back to work after five days of sickness, even when you could still be contagious. So if the billionaires know that they should protect themselves from COVID, why are we okay with subjecting ourselves and each other to it?
And as someone who is chronically ill (not with Long COVID), I barely have the energy for organizing. My life is often consumed by full time work and managing my health (which includes doctor appointments, surgery, recovery, physical therapy, therapy, and just dealing when flare ups occur). I can’t imagine how hard it is to be involved with organizing if you have ME/CFS from Long COVID. So the more we protect ourselves and our health, the more capacity we can have for organizing. And the more we make our spaces more accessible (through masking, ventilation/filtration, testing, online options, etc), the more we are able to include those of us who are disabled or chronically ill. So that we can participate with less risk of getting sicker.
I’m not writing this to try to shame anyone or anything. I sincerely try to understand what other peoples’ logic is around pandemic normalization. Honestly, as I see people unmask and be okay with normalized disease, I worry about their safety long term. I truly do not want to see anyone get long COVID or become hospitalized. If you are still reading this, I want you to live a long, healthy life. So please, consider this and try to implement some more mitigation measures in your life.
[1] https://hopkinsinfectiousdiseases.jhmi.edu/wp-content/uploads/2022/12/12-02-2022_Update_COVID-19-PrEP-and-PEP-Guidance.pdf
[3] https://www.govexec.com/management/2023/01/long-COVID-stemmed-mild-cases-COVID-19-most-people-according-new-multicountry-study/381491/
[4] https://www.nih.gov/news-events/nih-research-matters/how-sars-cov-2-contributes-heart-attacks-strokes#:~:text=COVID%2D19%20is%20known%20to,contributes%20to%20this%20increased%20risk.
[9] https://fortune.com/well/2022/11/05/mini-brain-organoids-COVID-infection-neurologic-symptoms-synapses-long-COVID-pruning-stroke-depression-anxiety-memory-migraines-parkinsons-alzheimers-tremor-headache-confusion-brain-fog-mood-disorder/
[15] https://www.hopkinsmedicine.org/health/conditions-and-diseases/coronavirus/heart-problems-after-COVID19
[18] https://www.infectioncontroltoday.com/view/COVID-19-study-suggests-long-term-damage-immune-system
[20] https://publications.aap.org/pediatrics/article/150/5/e2022058167/188743/COVID-19-and-Acute-Neurologic-Complications-in?autologincheck=redirected%3fnfToken%3d00000000-0000-0000-0000-000000000000
[21] https://health.ucdavis.edu/news/headlines/international-study-identifies-risks-for-long-COVID-in-children/2022/07
[27] https://www.cidrap.umn.edu/COVID-19/review-spotlights-COVIDs-impact-pregnant-women-including-7-fold-higher-death-rate
[28] https://www.news-medical.net/news/20220919/COVID-19-during-pregnancy-damages-the-placentas-immune-response-to-further-infections.aspx#:~:text=%22Our%20study%20suggests%20that%20babies,until%20the%20time%20of%20birth.
[35] https://www.businessinsider.in/science/health/news/even-mild-COVID-infection-can-cause-sudden-hearing-loss-study/articleshow/99488945.cms
[38] https://fortune.com/well/2022/03/08/long-covid-brain-aging-damage-smell-study-mild-symptoms/amp/
[40] https://www.scientificamerican.com/article/covid-19-leaves-its-mark-on-the-brain-significant-drops-in-iq-scores-are/
[44] https://www.scmp.com/news/hong-kong/health-environment/article/3217737/70-cent-hong-kong-COVID-victims-experience-long-term-after-effects-survey-10000-patients-finds
[47] https://web.archive.org/web/20230615044852/https://www.cdc.gov/coronavirus/2019-ncov/your-health/understanding-risk.html
[54] https://www.scientificamerican.com/article/the-weight-of-stigma-heavier-patients-confront-the-burden-of-bias1/
[56] https://autisticadvocacy.org/2022/01/letter-from-the-disability-community-to-cdc-director-rochelle-walensky
[58] https://www.bu.edu/sph/news/articles/2023/COVID-19-deaths-in-the-us-continue-to-be-undercounted-research-shows-despite-claims-of-overcounts/
[61] https://www.npr.org/sections/health-shots/2020/11/23/937173060/mask-mandates-work-to-slow-spread-of-coronavirus-kansas-study-finds
[64] https://www.cidrap.umn.edu/COVID-19/commentary-wear-respirator-not-cloth-or-surgical-mask-protect-against-respiratory-viruses
[65] https://www.aljazeera.com/features/2022/3/11/two-years-of-COVID-the-battle-to-accept-airborne-transmission
[67] https://www.epa.gov/coronavirus/indoor-air-and-coronavirus-COVID-19#:~:text=Particles%20from%20an%20infected%20person,for%20hours%20in%20some%20cases.
[72] https://img1.wsimg.com/blobby/go/7cef200f-e985-4fbb-8369-33c964059346/downloads/Far-UVC%20Info%20Clean%20Air%20Club.pdf?ver=1713447163385
[81] https://hbw.citeline.com/RS150700/Bausch-Considers-Proposal-For-COVID-19-Drug-Lumify-Eye-Drops-Inactivate-Virus-In-Lab-Tests
[85] https://www.medscape.com/viewarticle/988556#:~:text=Treatment%20with%20the%20diabetes%20drug,to%20have%20in%20COVID%20infection.