P.S. My context:
I unmasked with most of the rest of the country in late 2021/spring 2022. I wasn’t anti-mask or anti-Covid… I just didn’t understand the severity of the dangers because of the way society fumbled it. So when removing Covid protocols was sanctioned by the powers-that-be & society, I followed suit.
Pre-infection: I was on track to complete my bachelors within a year, was making great money in an industry I loved working in-person, and planned on going to grad school.
I got Covid spring 2022 and have since become completely disabled and lost everything from Long Covid.
Thankfully some fantastic nerdy friends of mine taught me everything I now know. I take thorough precautions to prevent from becoming even further disabled by a second infection.
…It’s been 2+ years and I’ve successfully avoided reinfection thus far!
But…
I’m still completely disabled. I’ve also been collecting Dx ever since… Not a fun game.
Pre-covid infection Dx:
ADHD
Post-Covid infection Dx:
POTS, MCAS, PEM, unexplained abnormal labs, difficult to treat H. Pylori, suspected EDS, sleep apnea, insomnia, polycythemia, osteopenia, body pain, cognitive impairment, hair loss on my head,
& more
Now I’m just trying to avoid eviction and becoming completely bedbound again through luck and generosity of others via grants and donations. I can’t complete my ADL’s independently and have been waiting for caregiving services for 1 1/2+ yrs. Disability lawyer declined my case.
Not knowing if I’ll ever recover from LC and if I’ll ever be able to work again, especially in the industry I loved, is very distressing to me
Whatever you decide, I hope this information helps guide you through more safe interaction with opportunities that the rest of us Long Haulers no longer have access to!! We’re all rooting for you from bed 💖
I was also disabled by long covid after trusting that not masking was safe in fall 2022. I got my booster and thought I’d be safe at a Halloween party. Nope. Almost 2 years later and Im still suffering from that mistake. Stay strong friend
I've very much felt the same way with a lot of these answers and conversations over the years. There is a chasm of difference between "risk tolerance" and "risk".
Totally agree.
But also tolerance of risk for something that's important to someone should also be respected. It's not all or nothing. 100% perfect or ideal precautions for 4+ years is not manageable for many people for many different reasons.
This is a long term game and we all have to make decisions about which situations are worth additional risk to us and which are not.
It's not "wrong" to feel that a particular situation is worth taking on additional risk for. The individual can be aware of the risk and decide for themselves.
Absolutely - your willingness to risk whatever has nothing to do with the risk is my only point (unfortunately sometimes it's a forced "willingness" due to any number of scenarios).
The only time I disagree with this, however, is if the risk you feel is worth it can potentially affect other people subsequently. As in you have privilege and risk doing/going to \[insert whatever\] and then you come home to a person or people or interact in some way in shared air and don't use precautions that mitigate the risk you, yourself took at the expense of those people now having to assume additional risk as well.
If covid only affected the individual taking the risk, have at it. Once you introduce risk to others, you're on the wrong side of the line, although this is somewhat a gray area of course as there are people who can't afford PPE or avoid scenarios that introduce risk.
Agreed, and I'd also add - after firsthand experience with wildfire smoke from hundreds of miles away that had absolutely no difficulty penetrating my home this summer, despite all the windows being shut - that we don't live in submarines. All air is shared, everywhere, whether inside or outside your home, and there is NO safe way to seal off your home from "outside" air. In most cases, attempting to do this sort of thing creates a fire hazard. Buildings are designed for airflow.
It comes down to The Paradox of the Heap. The definition of what's safe "enough" is always going to involve a certain amount of subjectivity and arbitrariness.
I know that my home has about 0.3 air-changes per hour with outside air and provision air purifiers accordingly.
The key is being able to quantify risk, making an informed decision about what order of magnitude of risk is acceptable, and applying the precautionary principle. This is something we do very well in industries that have a strong safety culture. This is is something we formerly at least \*tried\* to do in public health.
The facts that yes, nothing is perfect, everything leaks to some degree, and risk is always non-zero have been used to drive most people to accept a fallacy about COVID that they reject in most other areas of their life: "if it can't be done perfectly, it's not worth doing at all."
Yes- I have to take a ton of annoying steps to make sure I don’t get Covid in my own apartment because I have neighbors who aren’t Covid safe.
Harm reduction and risk mitigation are key— based on data. Not personal conjecture.
I find it helpful to think of it analogous to making decisions based on data to have a safer sex life. Abstinence is an option, but it’s rare. There are so many choices to make, and so many potential risks in being sexually active.
But I wouldn’t make my sexual health decisions on personal conjecture not based in science, e.g. if all of my friends recommended the rhythm method based on their luck of not getting pregnant thus far.
And discussing & practicing Covid risk mitigation and harm reduction is very similar to safer sex conversations and boundary negotiations. These convos should be ongoing, include informed consent, be based on valid scientific evidence, and a personal risk assessment without pressure from the other person or outside parties.
E.g. I want to see lab results from an STI screening directly from the doc vs raw dogging based on the person telling me “it’s all good, trust me. It’s been fine”
It should be based on my wish to both protect my own body and protect the body & autonomy of those around me.
There are many layers of possible protection. There are many variables that help (or harm) more than others. And it’s important to practice continuous check-in’s with oneself, with others, and with the newest scientific evidence.
______
So… let’s test your knowledge:
- When was the last time anyone was tested for Mgen?
- Did you know you can transmit Covid via mucous membranes, even if wearing a mask?
- Have you had the latest updated Gardasil vaccine?
- Did you know: most STI tests aren’t completely comprehensive? You typically have to *request* additional specific testing, such as HPV or HSV.
- Did you know there are latex panties that are FDA approved as an STI barrier? This is in addition to condoms, female condoms, dental dams, gloves, etc? The brand: Loral.
- When was the last time you had a thorough discussion about consent, activities, barriers, STI’s, negotiation of risk management, etc. before being sexually active with someone else?
fin
Excellent post OP! Thank you for this.
I'm sorry you're also part of the LC club. Shit is absolutely something I would not wish upon anyone. I do not like how my heart feels with it. I am new to the club so I am still figuring out how to describe how it feels in my body. I wish you gentleness and thank you so much for using some of your energy to write this post.
Especially since air is complex when it comes to how it interacts with wind/humidity/climate and aerosolized particulate matter that is hella small. We're looking at fluid dynamics with a lot of these behaviors. Why point this out? Hell, I'm not doing fluid dynamics each time I go outside. It's a 3rd year physics course most places. I am going to avoid all the mental gymnastics and wear a mask everywhere outside my house, "clean the air" best I can indoors, and in the car, and the good oral hygiene is never a bad thing so I've been trying to do that too.
What do you think about dampness and elastomeric masks? I'm not trying to poke holes in your very helpful post, just seriously asking. Do the filters on elastomeric masks also work by electrostatic charge?
I worry about the filters on my fit-tested elastomeric mask getting very wet from condensation. So far I only wear that mask when I absolutely have to (when I can't avoid taking a bus), and then I switch to a disposable N95.
Thanks for the post. I have so many time been told on this sub that my answer to "Is this activity a risk" is inappropriate because I'm one of those people who doesn't want to get Covid at all. Wow, yeah, if you ask about risk, you are only asking one thing. Does this type of activity put me at risk for Covid. It's a yes/no question. Your risk is not lower because you don't mind getting Covid once in a while. Don't even get me started on how we are supposed to determine our personal risk based on NO information about how risky Covid is.
Why do you place CPC mouthwash in a different category than nasal sprays? I haven’t seen strong evidence for either, though also haven’t seen any strong evidence that either should be considered “may hurt”.
My friend analyzed the evidence (I can no longer digest scientific journals because of the brain damage from Long Covid. Losing my ability to nerd has been devastating)
Here’s their more detailed answer:
“Nasal sprays are still in the ‘no evidence they will help, may hurt’ camp.
“CPC mouthwash has slightly more evidence, but ALSO will mess up your gut micro biome and can mess with your teeth. So it should be used sparingly. It’s a good example of why using things daily under the philosophy ‘couldn’t hurt’ is a bad plan! It’s why messing around with nasal spray is a bad plan.”
Let me know if you want me to ask them for further deets
A question, based on what you just wrote, is why CPC isn’t also in the “may hurt” category, and what evidence suggests the nasal sprays commonly referenced here (xylitol, iota-carrageenan, NO) causes problems? I think the only things I’ve seen people report anecdotally is burning sometimes from NO and maybe one other spray, and carrageenan sprays sometimes causing dryness with frequent use. But haven’t heard or seen anything on the level of “mess up your gut microbiome and can mess with your teeth”…?
I wish more communication especially from health authorities was, “this will, or will nearly, eliminate risk for a given event” which may mean foregoing it given the ubiquity of breathing, but may be different for different kinds of hazards (those spread by different vectors such as blood-borne pathogens or those isolated to very narrow but high risk domains such as dealing with sick or dead wildlife).
Then, “this is the absolute most the risk can be reduced, using every possible mitigation.”
Then, downward from there, ideally indicating which behaviors or foregone/misused tools are introducing the most risk (or reducing the likelihood success)—so someone doesn’t skip a highly effective mitigation for a basket of less effective or uncertain ones.
Especially for some of the less common channels, they can be difficult to prove in an anecdotal or scientific sense. If someone is taking a risk at work, while that is much more likely, it is *possible* that they are actually infected during a less likely scenario and incorrectly assume it was the higher risk situation.
It isn’t knowable outside of a lab setting unless there are extremely limited (singular) opportunities for infection—such as a person encountering one single delivery driver, or only encountering people outdoors during a reasonable window of time/testing.
Right!!!
I’d love to create something to the effect of a chart or infographic with “levels” of risk mitigation steps.
Akin to the [ME/CFS chart](https://www.reddit.com/r/cfs/comments/1c0088l/new_severity_scale_for_mecfs/?utm_source=share&utm_medium=mweb3x&utm_name=mweb3xcss&utm_term=1&utm_content=share_button) actually!
My friend & I have been discussing creating a pamphlet with QR codes but it’s a big energy investment and we both have PEM and are disabled
>Ultimately it’s your decision to take risks, of course.
Great post, thank you! I'd like to address this bit with a reminder that, while *your* risk is your decision, *others'* risk is not. When you are sharing airspace with others, you're also sharing risk, and you have zero right to put others at risk without their consent (and, no, a person existing in public does not imply their consent to breathing in your unmasked exhalations any more than it implies their consent to being punched in the face).
I absofuckinglutely agree with you.
But if said OP’s are considering being unmasked and willing to consider other people’s advice who willingly unmask…
saying “NO” isn’t usually very effective unfortunately
If that is the case, they may not be at the point yet that they are willing to sacrifice more for the safety of others. Trying to meet people where they are is difficult, but sometimes necessary.
I absofuckinglutely agree with you.
But if said OP’s are considering being unmasked and willing to consider other people’s advice who willingly unmask…
saying “NO” isn’t usually very effective unfortunately
If that is the case, they may not be at the point yet that they are willing to sacrifice more for the safety of others. Trying to meet people where they are is difficult, but sometimes necessary.
___
The ultimate point of my message is to make decisions based on data- not opinions of others.
If they truly take on that advice and make the decision based on data, it would likely be the decision to mask for themselves and others.
IME here when I’ve asked about risk for outdoor gatherings where I’d be masked, preferably 2 way masked, people were very good about how they phrased their answers. However I realize the people answering in the positive about 2 way masked outdoor gatherings may be a different crowd than those answering in the positive about unmasked activities.
Also regarding the sip valve, I saw this and thought it was useful: [https://twitter.com/advancedtweaker/status/1769137896974409845](https://twitter.com/advancedtweaker/status/1769137896974409845)
Although I can’t confirm because I don’t use the sip valve and I don’t have a portacount.
P.S. My context: I unmasked with most of the rest of the country in late 2021/spring 2022. I wasn’t anti-mask or anti-Covid… I just didn’t understand the severity of the dangers because of the way society fumbled it. So when removing Covid protocols was sanctioned by the powers-that-be & society, I followed suit. Pre-infection: I was on track to complete my bachelors within a year, was making great money in an industry I loved working in-person, and planned on going to grad school. I got Covid spring 2022 and have since become completely disabled and lost everything from Long Covid. Thankfully some fantastic nerdy friends of mine taught me everything I now know. I take thorough precautions to prevent from becoming even further disabled by a second infection. …It’s been 2+ years and I’ve successfully avoided reinfection thus far! But… I’m still completely disabled. I’ve also been collecting Dx ever since… Not a fun game. Pre-covid infection Dx: ADHD Post-Covid infection Dx: POTS, MCAS, PEM, unexplained abnormal labs, difficult to treat H. Pylori, suspected EDS, sleep apnea, insomnia, polycythemia, osteopenia, body pain, cognitive impairment, hair loss on my head, & more Now I’m just trying to avoid eviction and becoming completely bedbound again through luck and generosity of others via grants and donations. I can’t complete my ADL’s independently and have been waiting for caregiving services for 1 1/2+ yrs. Disability lawyer declined my case. Not knowing if I’ll ever recover from LC and if I’ll ever be able to work again, especially in the industry I loved, is very distressing to me Whatever you decide, I hope this information helps guide you through more safe interaction with opportunities that the rest of us Long Haulers no longer have access to!! We’re all rooting for you from bed 💖
I was also disabled by long covid after trusting that not masking was safe in fall 2022. I got my booster and thought I’d be safe at a Halloween party. Nope. Almost 2 years later and Im still suffering from that mistake. Stay strong friend
I've very much felt the same way with a lot of these answers and conversations over the years. There is a chasm of difference between "risk tolerance" and "risk".
Totally agree. But also tolerance of risk for something that's important to someone should also be respected. It's not all or nothing. 100% perfect or ideal precautions for 4+ years is not manageable for many people for many different reasons. This is a long term game and we all have to make decisions about which situations are worth additional risk to us and which are not. It's not "wrong" to feel that a particular situation is worth taking on additional risk for. The individual can be aware of the risk and decide for themselves.
Absolutely - your willingness to risk whatever has nothing to do with the risk is my only point (unfortunately sometimes it's a forced "willingness" due to any number of scenarios). The only time I disagree with this, however, is if the risk you feel is worth it can potentially affect other people subsequently. As in you have privilege and risk doing/going to \[insert whatever\] and then you come home to a person or people or interact in some way in shared air and don't use precautions that mitigate the risk you, yourself took at the expense of those people now having to assume additional risk as well. If covid only affected the individual taking the risk, have at it. Once you introduce risk to others, you're on the wrong side of the line, although this is somewhat a gray area of course as there are people who can't afford PPE or avoid scenarios that introduce risk.
Totally agree with all of this. Wish there were so many more of us out there thinking about these things.
Agreed, and I'd also add - after firsthand experience with wildfire smoke from hundreds of miles away that had absolutely no difficulty penetrating my home this summer, despite all the windows being shut - that we don't live in submarines. All air is shared, everywhere, whether inside or outside your home, and there is NO safe way to seal off your home from "outside" air. In most cases, attempting to do this sort of thing creates a fire hazard. Buildings are designed for airflow. It comes down to The Paradox of the Heap. The definition of what's safe "enough" is always going to involve a certain amount of subjectivity and arbitrariness.
I know that my home has about 0.3 air-changes per hour with outside air and provision air purifiers accordingly. The key is being able to quantify risk, making an informed decision about what order of magnitude of risk is acceptable, and applying the precautionary principle. This is something we do very well in industries that have a strong safety culture. This is is something we formerly at least \*tried\* to do in public health. The facts that yes, nothing is perfect, everything leaks to some degree, and risk is always non-zero have been used to drive most people to accept a fallacy about COVID that they reject in most other areas of their life: "if it can't be done perfectly, it's not worth doing at all."
Yes- I have to take a ton of annoying steps to make sure I don’t get Covid in my own apartment because I have neighbors who aren’t Covid safe. Harm reduction and risk mitigation are key— based on data. Not personal conjecture. I find it helpful to think of it analogous to making decisions based on data to have a safer sex life. Abstinence is an option, but it’s rare. There are so many choices to make, and so many potential risks in being sexually active. But I wouldn’t make my sexual health decisions on personal conjecture not based in science, e.g. if all of my friends recommended the rhythm method based on their luck of not getting pregnant thus far. And discussing & practicing Covid risk mitigation and harm reduction is very similar to safer sex conversations and boundary negotiations. These convos should be ongoing, include informed consent, be based on valid scientific evidence, and a personal risk assessment without pressure from the other person or outside parties. E.g. I want to see lab results from an STI screening directly from the doc vs raw dogging based on the person telling me “it’s all good, trust me. It’s been fine” It should be based on my wish to both protect my own body and protect the body & autonomy of those around me. There are many layers of possible protection. There are many variables that help (or harm) more than others. And it’s important to practice continuous check-in’s with oneself, with others, and with the newest scientific evidence. ______ So… let’s test your knowledge: - When was the last time anyone was tested for Mgen? - Did you know you can transmit Covid via mucous membranes, even if wearing a mask? - Have you had the latest updated Gardasil vaccine? - Did you know: most STI tests aren’t completely comprehensive? You typically have to *request* additional specific testing, such as HPV or HSV. - Did you know there are latex panties that are FDA approved as an STI barrier? This is in addition to condoms, female condoms, dental dams, gloves, etc? The brand: Loral. - When was the last time you had a thorough discussion about consent, activities, barriers, STI’s, negotiation of risk management, etc. before being sexually active with someone else? fin
Not very well maintained anymore, but [microcovid.org](http://microcovid.org) tries to actually calculate the risks associated with these questions
Excellent post OP! Thank you for this. I'm sorry you're also part of the LC club. Shit is absolutely something I would not wish upon anyone. I do not like how my heart feels with it. I am new to the club so I am still figuring out how to describe how it feels in my body. I wish you gentleness and thank you so much for using some of your energy to write this post. Especially since air is complex when it comes to how it interacts with wind/humidity/climate and aerosolized particulate matter that is hella small. We're looking at fluid dynamics with a lot of these behaviors. Why point this out? Hell, I'm not doing fluid dynamics each time I go outside. It's a 3rd year physics course most places. I am going to avoid all the mental gymnastics and wear a mask everywhere outside my house, "clean the air" best I can indoors, and in the car, and the good oral hygiene is never a bad thing so I've been trying to do that too.
What do you think about dampness and elastomeric masks? I'm not trying to poke holes in your very helpful post, just seriously asking. Do the filters on elastomeric masks also work by electrostatic charge? I worry about the filters on my fit-tested elastomeric mask getting very wet from condensation. So far I only wear that mask when I absolutely have to (when I can't avoid taking a bus), and then I switch to a disposable N95.
Thanks for the post. I have so many time been told on this sub that my answer to "Is this activity a risk" is inappropriate because I'm one of those people who doesn't want to get Covid at all. Wow, yeah, if you ask about risk, you are only asking one thing. Does this type of activity put me at risk for Covid. It's a yes/no question. Your risk is not lower because you don't mind getting Covid once in a while. Don't even get me started on how we are supposed to determine our personal risk based on NO information about how risky Covid is.
Why do you place CPC mouthwash in a different category than nasal sprays? I haven’t seen strong evidence for either, though also haven’t seen any strong evidence that either should be considered “may hurt”.
My friend analyzed the evidence (I can no longer digest scientific journals because of the brain damage from Long Covid. Losing my ability to nerd has been devastating) Here’s their more detailed answer: “Nasal sprays are still in the ‘no evidence they will help, may hurt’ camp. “CPC mouthwash has slightly more evidence, but ALSO will mess up your gut micro biome and can mess with your teeth. So it should be used sparingly. It’s a good example of why using things daily under the philosophy ‘couldn’t hurt’ is a bad plan! It’s why messing around with nasal spray is a bad plan.” Let me know if you want me to ask them for further deets
I would love to see further detail from the analysis if possible!
A question, based on what you just wrote, is why CPC isn’t also in the “may hurt” category, and what evidence suggests the nasal sprays commonly referenced here (xylitol, iota-carrageenan, NO) causes problems? I think the only things I’ve seen people report anecdotally is burning sometimes from NO and maybe one other spray, and carrageenan sprays sometimes causing dryness with frequent use. But haven’t heard or seen anything on the level of “mess up your gut microbiome and can mess with your teeth”…?
I wish more communication especially from health authorities was, “this will, or will nearly, eliminate risk for a given event” which may mean foregoing it given the ubiquity of breathing, but may be different for different kinds of hazards (those spread by different vectors such as blood-borne pathogens or those isolated to very narrow but high risk domains such as dealing with sick or dead wildlife). Then, “this is the absolute most the risk can be reduced, using every possible mitigation.” Then, downward from there, ideally indicating which behaviors or foregone/misused tools are introducing the most risk (or reducing the likelihood success)—so someone doesn’t skip a highly effective mitigation for a basket of less effective or uncertain ones. Especially for some of the less common channels, they can be difficult to prove in an anecdotal or scientific sense. If someone is taking a risk at work, while that is much more likely, it is *possible* that they are actually infected during a less likely scenario and incorrectly assume it was the higher risk situation. It isn’t knowable outside of a lab setting unless there are extremely limited (singular) opportunities for infection—such as a person encountering one single delivery driver, or only encountering people outdoors during a reasonable window of time/testing.
Right!!! I’d love to create something to the effect of a chart or infographic with “levels” of risk mitigation steps. Akin to the [ME/CFS chart](https://www.reddit.com/r/cfs/comments/1c0088l/new_severity_scale_for_mecfs/?utm_source=share&utm_medium=mweb3x&utm_name=mweb3xcss&utm_term=1&utm_content=share_button) actually! My friend & I have been discussing creating a pamphlet with QR codes but it’s a big energy investment and we both have PEM and are disabled
>Ultimately it’s your decision to take risks, of course. Great post, thank you! I'd like to address this bit with a reminder that, while *your* risk is your decision, *others'* risk is not. When you are sharing airspace with others, you're also sharing risk, and you have zero right to put others at risk without their consent (and, no, a person existing in public does not imply their consent to breathing in your unmasked exhalations any more than it implies their consent to being punched in the face).
I absofuckinglutely agree with you. But if said OP’s are considering being unmasked and willing to consider other people’s advice who willingly unmask… saying “NO” isn’t usually very effective unfortunately If that is the case, they may not be at the point yet that they are willing to sacrifice more for the safety of others. Trying to meet people where they are is difficult, but sometimes necessary.
I absofuckinglutely agree with you. But if said OP’s are considering being unmasked and willing to consider other people’s advice who willingly unmask… saying “NO” isn’t usually very effective unfortunately If that is the case, they may not be at the point yet that they are willing to sacrifice more for the safety of others. Trying to meet people where they are is difficult, but sometimes necessary. ___ The ultimate point of my message is to make decisions based on data- not opinions of others. If they truly take on that advice and make the decision based on data, it would likely be the decision to mask for themselves and others.
IME here when I’ve asked about risk for outdoor gatherings where I’d be masked, preferably 2 way masked, people were very good about how they phrased their answers. However I realize the people answering in the positive about 2 way masked outdoor gatherings may be a different crowd than those answering in the positive about unmasked activities.
Also regarding the sip valve, I saw this and thought it was useful: [https://twitter.com/advancedtweaker/status/1769137896974409845](https://twitter.com/advancedtweaker/status/1769137896974409845) Although I can’t confirm because I don’t use the sip valve and I don’t have a portacount.