Since I've taken up this platform I've only put out one post "of my own" and that was really just a test to see if anyone would engage on this strange, new place I was checking out. I prefer to respond to other people and discuss what's on their minds rather than to put my own topics out there. But this has really been bugging me lately, so I'm going to throw it out there and if no one cares then nothing changes and I'll keep kicking it around in my own mind.
If you don't want to hear or think about COVID feel free to tune out now and not follow along with the rest of my thoughts.
I am really interested in what people have to say here, and I welcome any real life thoughts on the subject whether you are having the same experiences or not. What I'm really not interested in is any "COVID isn't real" or "plandemic" nonsense and I'll block accordingly.
I'm a scientist. I think accordingly I like numbers and stats. Those stats are often hard to come by during things like a pandemic, because science is often slow.
So, while I read a lot of studies and journals about what's going on in the world, one of the first things I did as I realized what *could* be happening was to start reading personal accounts wherever I could. One of the places that I keep in my mind daily is the long haulers sub on reddit. Every day I remind myself about the human toll by reading their, often jarringly, personal takes.
In that vain, I've been thinking a lot lately about the people I know and care for. My wife and I have never kept a very large social circle. It's just not the type of people we are. But, we have some family nearby and a handful of friends and coworkers with whom we keep in touch.
I'd like to share some generic info about the people we are closest to and what I'm really curious about is:
Is our experience unusual? Are you seeing something similar?
All anecdotal, of course. I'm not looking for a scientific, case study on the people around you. Just, generally, is this the way the world is now?
First up, my father. He's in his 70's, so some decline isn't unexpected. However, he's always been a very active person with a sharp mind. In his own words, since his 2nd COVID infection recently, he's "not up to much of anything" physically, and has absolutely crushing brain fog. I don't know if I've ever known someone who's read as many books as he has, but, he just can't at this point.
Continuing with family, my wife's parents. My mother in-law was never the healthiest person. It's hard to tease out her longterm issues from her more recent, but, cognitively she never had issues until recently. Now she's basically exactly what you see in the movies when they're trying to show you that someone's begging the decent into dementia. My father in-law had zero health issues until this year and now has cancer. COVID related from T-cell issues or not at all related there's no way to tell.
My wife's best friend since they were kids is clearly the lucky one here. She locked herself down for two years, never went anywhere without a mask and then at the beginning of this year just decided to be done with all of that. She's travelled around the country to weddings and restaurants and swears she's as healthy as ever and never even got sick this year. I take her at her word.
My best friend, on the other hand, also was extremely cautious for a couple of years and then decided he was over it early this year. He's a veteran and hasn't missed his morning run, rain, sleet or snow, for decades....until he got COVID. Afterward he physically couldn't any longer. All of his joints hurt. He was diagnosed with autoimmune, or rheumatoid, arthritis. Now, if you ask him COVID has absolutely nothing to do with it. It was just a coincidence, and, again, I'm not here to argue that. I'm talking strictly anecdotal experiences here.
Another friend of mine is a really smart scientific mind. He's a science teacher and decided early on that he was going to go through whatever happened while in the classroom. I don't know exactly how many COVID infections he's had, let's just call it multiple. Neither him, his wife, nor their two kids can get healthy at this point. He's missed over 50% of his work days this semester, his kids are never able to go to daycare or school, and it's just one infection after another. The flu, croup, RSV, colds, COVID, etc. In his own words he just "can't get healthy. It's like my immune system doesn't work anymore" but he, also, believes it has nothing to do with COVID. Not that he has an explanation, but, clearly not COVID in his mind.
My wife's friend, also a teacher, has had an almost identical experience. Without belaboring the point, she is sick all of the time. Sadly, her little kid, now 2, has spent half of her life constantly sick. Just last week she was telling my wife that all she wanted was for them to be healthy for 2 weeks. Just 2 weeks and maybe they could have a good Christmas. They haven't managed 2 weeks once this semester. So what happened? This morning she was practically sobbing to my wife that they're sick, again, and she's far too sick to make it in to teach today.
I'll leave it at that for now. I just needed to put this down somewhere, probably to help me wrap my own head around it. I'm surrounded by what I think that I clearly see as cognitive dissonance. In the midst of a global pandemic how can you be constantly sick, but think the two are unrelated? How can you think that they might be related, but still do nothing about it?
And, again, I really wonder....is it just me? Do I know a lot of people who seem adversely affected, and have gone from extremely healthy to very unhealthy over the last year or two while other people don't? Or is this what everyone is seeing, but, somehow not reacting to?
Lately I kick all of this around in my head wondering what the end game is, but, perhaps I'm asking the wrong questions because I read a lot of scientific studies and apply what I'm reading to the world around me, and in the end my experiences aren't what everyone else is seeing?
@BE Thanks for sharing these anecdotes. It helps to know what others are seeing. My sense is that some or maybe most of the people you described are experiencing long covid.
My social circle was small before the pandemic and nearly nonexistent now. So, here are the few anecdotes I can offer:
@BE My parents are in their late 70s. One has had congestive heart failure for about 15 years. The other recently recovered from cancer. Neither have gotten covid, and yet I've noticed some decline in their physical health & mental sharpness over the past three years.
As you know, my spouse (late 30s) caught covid twice in the classroom and now suffers from a handful of symptoms commonly associated with long covid: fatigue, headaches, poor circulation, etc. Spouse understands it's LC.
@BE Spouse has a friend, similar age, who got long covid after only one infection, then got infected again which exacerbated the LC. Symptoms are severe and debilitating. This person understands it's LC.
Many of my spouse's coworkers have gotten covid, but we don't know how they're doing, since people rarely talk about it.
Most of the students in the school have gotten covid multiple times, and some are showing symptoms of long covid: cognitive decline, headaches, persistent tremors.
@BE Much of the cognitive dissonance comes not from family or friends but from school administrators in the form of silence and denial. Every single one of them insists on behaving as though covid doesn't exist, as though everything is fine and normal. We're in the middle of yet another bad surge with no meaningful mitigations. The next two months will be illuminating, to say the least.
I really appreciate you sharing those stories! It's becoming harder for me to see what's going on and at the same time find that, even amongst my scientifically literate and very smart friends and colleagues, virtually no one will say "long COVID" or even acknowledge the *possibility* of COVID being a part of their situation.
I find myself just sitting around thinking about it all and how we're never going to get anywhere without the discussion at least starting, and it hasn't for the vast majority of people.
@BE @pixplz I love how easy it is to find academics on mastadon 😊, I used to spend way too much time on Pubmed.
Minor point, that is a hope and wish I have 👇
Academics might want to go a little interdisciplinary and study modern mass marketing (which uses the same principles as propaganda) because swaying a mass audience is different than teaching students who paid to be in class and need a good grade
You're hitting on a big thing with me there. I've said this here a few times and I say it all the time to people I know and work with in life.
Scientists are usually poor communicators to non-scientists.
I suffer from this myself. I'm wordy and frequently I spend a long time getting to my point and lose my audience along the way.
@BE @pixplz labov’s work on sociolinguistics may be more up the alley for some academics and understanding the value of code switching and how to identify an audiences group identity bias (not only what it is but how strongly it’s held) by how they speak can be invaluable when trying to reach a particular demographic
@BE I agree, we have to have these discussions. I see it as a first and essential step in building a mass movement with ACT UP as a possible blueprint. There appears to be some grassroots organizing around treatments for long covid specifically, but I haven't seen any significant movement toward actually ending the pandemic. Yet.
We've been having these discussions at MandateMasksNY / MandateMasksUS, the World Health Network (@whn) , and other advocacy organizations, but again, we have little in the way of experts on marketing.
I know only the ultra-basics of mass communication (bits are pinned to my profile), and I wish I knew more, but most of the scientist-advocates are still learning the basics.
Anyway I would love to discuss this more and learn more from all of you; we need to organize more.
@neroden @BE @whn Yes. We need to organize. I'm working on investigating my school district and trying to attract attention from news media by offering up my findings. I can contribute to organizing efforts by teaching others how to gather public records from their local public agencies. So, if you know anyone who's interested in learning more about that, I have the time and desire to help. Another avenue I'd like to learn more about is class action lawsuits.
@BE @pixplz thanks for the thread and thank you to all the replies (though I can’t seem how to figure out how to maximize the number to include in the conversation.. oh well).
We humans are awash in cognitive dissonance. The delusion that we are rational agents being the largest CD of all. For many, admitting that their resignation to getting COVID then caused their ongoing ill-health is admitting an act of commission caused the negative outcome. Thus we deflect..
@auscandoc @BE @pixplz so true. My sister has long Covid with debilitating fatigue. She knows she has long Covid and says she got Covid from being careless by eating inside restaurants and not wearing a mask inside stores. However she still eats inside restaurants. I can’t make her be more careful. I give up.
That 10-20% of the populace still smoke despite there being not a person on the planet that doesn’t know the harms is a demonstration of this.
We are increasingly learning of the cancer risk of alcohol yet we (well most of us) still treat alcohol quite benignly.
We all get our dopamine in our own way and we are somewhat enslaved to it.
We are emotional not rational.
@auscandoc @EverMama8 @BE @pixplz Denial is also pandemic.
@lzvolk @EverMama8 @BE @pixplz at the risk of starting a semantics war I think it can be argued that denial is endemic.. and always has been. 🙃
@auscandoc @EverMama8 @BE @pixplz By pandemic, I mean national borders don’t exist. It’s everywhere.
Not only do we treat alcohol benignly, there is a huge cultural celebration of alcohol. So many put photos of themselves having a cocktail on Facebook as they equate it with “the good life.”
@EverMama8 @BE @pixplz yes.. that was exactly the mental picture I was thinking as I tooted. I for one am “guilty” of indulging this cognitive dissonance. So it doesn’t surprise me that many can think “My Long COVID is not COVID”.
This is a really good point. I keep going back to the idea that most people in first world countries today have spent their entire lives in a bubble of sorts, mostly safe from disease thanks to public health. Our ancestors who survived(or didn't) prior plagues would be ashamed that we seem to be running towards the plague instead of away.
@BE @auscandoc @EverMama8 @pixplz Noooooooo. It's not just 1st world. My teacher friends in South Africa are right back in classrooms with the same "It's just a cold/flu" bullshit being fed to everyone.
@GinevraCat @auscandoc @EverMama8 @pixplz
Really great data point and thank you for sharing!
@auscandoc @EverMama8 @BE @pixplz agreed. Even my dopamine sources have dangers: cats, gardens, chocolate!
I feel this so much @EverMama8. It's exhausting and I gave up as well. It's hard to watch people you care about continuing on as if nothing were wrong.
@auscandoc @BE @pixplz Had an interesting discussion on this topic (cognitive dissonance, etc) with a HS senior the other day. The younger population seems to be more aware & perceptive than we give them credit for. I wonder what occurs (mentally) as people become adults and lose ability to critically think.
@lzvolk @BE @pixplz “Once you have accepted a theory and used it as a tool in your thinking, it is extraordinarily difficult to notice its flaws. If you come upon an observation that does not seem to fit the model, you assume that there must be a perfectly good explanation that you are somehow missing. You give the theory the benefit of the doubt, trusting the community of experts who have accepted it.“
Kahneman
Or, as my father used to say, “You can lead a horse to water, but you can’t make it drink.”
One of my all time favorites from Gary Larson and so apt for the discussion!
Sincerely thank you everyone for all of the great responses. It's been very enlightening. There's really no need for any COVID cautious person to feel "alone" as there really are a lot of people out there doing their best.
Watching so many people talk this week about their current holiday experiences with COVID ignoring/denying family has been interesting. So much denial out there.
@pixplz @BE Yup. Kids' current school had a 400-person holiday celebration with food and singing. No one in our family attended.
In contrast, kids' old school had a holiday celebration with no food and sent out email beforehand asking everyone to mask. Not everyone's doing it completely wrong. Though many are.
@pixplz @BE Yes! I work at a school in NL. I finally have COVID this week. I never stopped wearing a mask to school after 2020 but have been less cautious lately.
(Also, I have ADHD, so I'm automatically at higher risk due to impulse control and just plain forgetting to put it on sometimes.)
Anyway, this year I have seen more teachers off sick, more often than ever before. But school administrators and managers insist COVID is just like a cold, and our ventilation is fine.
I despair.
@pixplz @BE The unquantified effects of isolation and restrictions on physical activity over this past 3yrs could quite easily account for your parents' current state...older people decline more quickly and recover less when circumstances work against them. As a retired nurse for the elderly, I knew that maintaining physical activity went hand in hand with stimulating mental alertness.
@BE My spouse and I have been very cautious. We don't have kids, we don't have people over, we don't seek out social gatherings. At work, in stores, at medical offices, we at least wear surgical masks. He's had to travel some recently and wore a KN95 the whole time. Neither of us have ever tested positive.
Our parents are all in their 70s and 80s. His parents (older) are basically hermits and haven't had it. My parents are low-to-medium social and have each had it once, incredibly mild (like 6 hrs of symptoms and then done). They wear cloth masks indoors in public, made according to the best materials and construction I could come up with based on the literature at the time. They visit their out-of-state grandkids around once a month except during the winter. So far, they don't seem any the worse for wear. No new conditions, no cognitive impairments that I can discern.
My sib and sib-in-law are both university professors and have one kid in primary school and another one in pre-K. The little one tested positive once, but nobody else in the house did. This was another case of a day or less of symptoms followed by a quick return to evident health. Since 2019ish, the kids have each had one pretty severe bout of influenza, and they both had RSV earlier this season. They try to keep everybody in masks when they're in a crowded public place, but that's hard with the littles and so few other people reinforcing the behavior. They are also not ragingly social, but they have the added risk of swim lessons and dance lessons and track meets and such.
Spouse's sib & family are extremely isolated - they live in a rural area, the kids (tweens) are homeschooled, sib doesn't work (but has an MD), and the spouse is WFH about 50% of the time. They recently had covid go through the house and are still recovering.
All of the adults in this cohort are chemists, engineers of varying stripes, or medical doctors. We all take this very seriously, and nobody is under the illusion that the pandemic is "over." Some people's precautions have loosened a little (see also: children), but nobody has gone completely pre-pandemic.
I feel like we've been exceedingly lucky. We're all *aware* that we've been exceedingly lucky, and we're not inclined to tempt fate. Most of the people I know who had it once have re-upped their mask game and avoided repeat infection. I think we're all grateful to mostly be raging introverts who don't go out very much.
These are the kinds of personal stories that are hard to come by out there. I really appreciate you taking the time to respond and I hope you all continue to stay healthy!
@BE People’s interpretations of the world are strongly colored by the information they are surrounded by. In Wisconsin there are 85 radio stations that air right wing talk before & after farm reports & sport events, rural folks listen constantly due to long time in cars & working outdoors and in barns etc, then Fox & off shoots all amplified on FB that is used for local stuff.
Different than being on Pubmed frequently 🤷♂️
You are not wrong on this at all. One of the real failures of COVID information has been the media...pretty much across the board, unfortunately. I forget exactly which friend who gave up on precautions earlier this year I'm referring to here, but, their change of heart was after hearing some NPR segment on how the dangerous part of pandemic was over.
@BE By way of analogy,tracing things back to the root pathology can be useful. We used to have super high top tax rates, no billionaire tax loophole, restrictions on lobbyists, and we used stringently enforced anti trust (monopoly) law. All that has gone away.
When you have individuals richer than some countries democracies die.
Spot on. Then you connect the way the COVID response has mirrored the climate change response and the governmental side of things often becomes more clear. $45 billion more in the defense bill than was asked for? Not a problem! $10 billion for COVID? Ooooh, we can't afford that.
But what's driving me nuts is watching people I've known for decades suffering, wondering why, but refusing to even hear a possible explanation if it involves "COVID" at all. It often makes me think I've totally gone off the deep end.
@BE I wandered through your posts & replies on your timeline. I’m glad I found you. I’m going to really enjoy reading your posts here.
@voron I sincerely appreciate that! I try not to talk for the sake of talking and it's nice to be on a platform that seems to appreciate that.
@BE I haven't observed anyone in my sphere who is exhibiting any of the issues in your anecdotes, but I know that I will now be hyper-observative. It's super interesting to me; thank you for sharing them.
Sort of off the subject, but do you know if one can test for long covid, especially if one has gotten all the vax? I know there are often micro clots present in LC patients, but would they be present if, say, the person takes blood thinners?
I really appreciate you taking the time to respond!
Questions like this are really important if we're going to move forward, too.
Off the top of my head I remember that the Long COVID Research Initiative was working on a test for micro clots. I don't know if that's out there and available yet, but, while giving it a quick google search I found this from WebMD:
https://www.webmd.com/lung/news/20221207/microclots-may-explain-long-covid-symptoms
Having a legit test for Long COVID would be a real game changer. I know there was a study that showed certain blood markers showed up frequently with long COVID, and I just found a Nature article about it:
https://www.nature.com/articles/d41586-022-00118-2
But, long story short, this is one of those situations that the science needs to catch up with the happenings in the world. A real diagnosis would mean a lot to the people who are struggling.
@BE Thanks for the links! My daughter has had Covid twice, but had no symptoms the first time; she only found out after a chiro recommended an antibody test & she tested positive. The second time (post 1st vaccine) though, she said was horrible. Now after being made aware by your anecdotes, I do recall asking her many times during our phone convos whether she had a cold ... she sounded like she did. She manages a restaurant, so I'm now wondering if LC is contagious like COVID?
Having watched the way some people seem to have so many issues post-COVID infection and some just don't I've often wondered if it largely comes down to which variant, or how large of a viral dose they get. It's probably a mix of all of it.
Each variant seems to have distinct paths which it takes. Some are more in the nasal passages and lungs, some more in the throat, etc. I'm sure whether you're briefly exposed versus sitting in a cloud of viral shedding for hours makes a difference as well.
There's so many studies going on and so far that science has to go before it catches up with people's experiences out in the world on this virus. As a scientist I hate to give advice before "all of the science is in" so to speak, but, as an example, my dad asked me just this morning if I knew anything that could help him out with his symptoms. It's probably been about a month since he had COVID and particularly the brain fog is hard for him to deal with. I don't think there's been any sort of conclusive science on the issue, but, I also don't want to leave him hanging, so I suggested a few things I've seen people say helps.
We're in really uncharted(modern) times. Hopefully your daughter comes through them relatively unscathed!
@BE Thanks, me too. I'll see her soon, so I might do a bit of questioning. No, I WILL do a bit of questioning.
So. Many. Variables. And variants. Not to mention existing conditions. Asthma. COPD, ad infinitum. THIS is why I became an English major!😀
@BE to be honest, I've ghosted all my friends who have decided to "yolo" covid because I feel like we are currently living on different planets and I just can't deal with knowing that they are likely damaging themselves. But I'm a professor and I get these same kinds of stories from my students. I feel for them but don't really feel like I can do anything, as informing them about COVID is not my job. I find it excruciating sometimes, though.
I don't blame you one bit for ghosting them. I've kept a couple of longterm friends who don't give me any attitude about my decisions, they understand it, and don't shove pictures of them doing things and whatnot in my face. It's a balancing act, but, yes, a couple of people mentioned in my thread have young kids and it absolutely breaks my heart to see what they're going through *now* and to worry about what they'll go through later as they grow up. It's hard to watch people damage themselves and their loved ones, and I guess that's one of the reasons it's been bugging me so much lately. As the whole medical situation, by pretty much any metric, continues to get worse I often feel like I'm the only one amongst my peer group who really worries about it.
I'm not a scientist, but I promise, it is not just you. Keep wearing a good mask, stay up to date on vaccines, clean and ventilate the air as much as you can.
@ColoradoCarol It is certainly not just you or @BE ! There's an entire Zero Covid server (zeroes.ca), and a server set up by the World Health Network (forall.social), on Mastodon,... most of the Covid-safety advocates here are on other servers though
@neroden I've found several scientists, docs, and a few other accounts I followed on the bird site. Thanks for your reply.
One more case in my little anecdotal study here, for now. My wife's boss. She, thankfully, seems to see the problems. Recently she allowed my wife to skip a "mandatory" in person meeting(we both work from home, and I have worked from home since ~2015 when I stepped out of the lab) when my wife said she was still being COVID cautious. Her response was that she wished she had been because she was recovering from her 5th infection and after her 4th she developed "a mysterious autoimmune disorder" that her doctor was having a hard time figuring out. She realizes that it was likely COVID, but, still takes very few precautions.