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You are here: Home / Anderson On Health Insurance / What we don’t know will hurt a lot of us

What we don’t know will hurt a lot of us

by | 100 Comments

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Ed Yong in the Atlantic writes about the long-haulers from COVID:

When we spoke on day 150, she was on her fifth month of gastrointestinal problems and severe morning nausea. She still has extreme fatigue, bulging veins, excessive bruising, an erratic heartbeat, short-term memory loss, gynecological problems, sensitivity to light and sounds, and brain fog. Even writing an email can be hard, she told me, “because the words I think I’m writing are not the words coming out.” She wakes up gasping for air twice a month. It still hurts to inhale.

Tens of thousands of people, collectively known as “long-haulers,” have similar stories…They suggest that in the United States alone, which has more than 5 million confirmed COVID-19 cases, there are probably hundreds of thousands of long-haulers.

This is our biggest unknown. We don’t know what long term prognosis from COVID is. We don’t know what one year of COVID looks like. We don’t know this because we only have 8 months worth of data on anything about COVID. We have less than six months of data on any appreciable population in the United States.

Some people are likely to have recovered with no long lasting effects.

Other people still have not recovered to their January 2020 health status. And they might never.

We don’t know!

And this is why the YOLO let’s get herd immunity plans by engaging in mass internal migration and social mixing known as college move-in falls apart on any risk assessment measure. We know that higher infection levels and community spread will lead to more deaths. We can somewhat model that with appropriate coefficiencts for demographic changes in the mixture of infections. We can’t really model long term effects of incremental additional infections.

we need to crush community spread. We need to do that to minimize deaths and to also minimize future long term consequences of being infected and not fully recovering.

Reader Interactions

100Comments

  1. 1.

    Mousebumples

    I completely agree. Recent reports indicate we may have long lasting immunity if we are infected – but with the risks of death or long term disability, why risk it ?

  3. 3.

    Mary G

    It’s a good argument for universal access to health care, because these people will need a lot of it.

  4. 4.

    OzarkHillbilly

    Dave, I wanted to let you know that tho it took a while for my NOLA son’s application for Medicaid to process, it finally came thru in the positive. Thanx much for the advice, and the offer of now thankfully unneeded additional assistance.

  8. 8.

    Gin & Tonic

    @OzarkHillbilly:  Not directed to you, but the Medicaid thing made me think: my son just returned to the US, and although there’s a job in the pipeline, he is not currently employed, so zero income. He applied through NYS for Medicaid, and I guess they told him coverage will begin Oct 1. I thought that international relocation was a “qualifying event” and he could get immediate coverage? David?

  9. 9.

    WereBear

    Mr WereBear went through years of hell to get on disability, even with an official diagnosis of CFS/ME from a Johns Hopkins-educated endocrinologist.

    We had to sue his disability insurance, and settle for pennies on the dollar.

    COVID long haulers are going to face the same crap if we don’t ditch the profit motive from sick people.

  10. 10.

    ant

    This has been obvious to me for quite some time now.

    The Republican “take the hit” strategy is a risky roll of the dice over the long term irrespective of death counts in 2020-2021.

    It was a long time ago when I told my husband that we would be paying for Covid for the rest of our lives in increased health care premiums, and higher disability payments. Also lower overall productivity, and lower quality of life as a nation compared to the world on average.

    The failure to seriously address collective action problems will be the death of our species. There are no easy answers. We are collectively incapable of planing for the future.

  11. 11.

    R-Jud

    I had a COVID-like illness back in late March. (Symptoms started just days after the UK ended community testing, so I don’t know for sure if I had it, but I had all the symptoms including loss of smell and the weird toes.) I’ve made quite a decent recovery, but am still dealing with brain fog, heart palpitations, and (weirdly) tinnitus all this time later. I can’t imagine how I’d be coping if I were still having that shortness of breath I experienced back in the spring.

  13. 13.

    David C

    Great article. The neurological effects seem to go beyond the organ inflammatory and vascular injury effects. Because we have a defined cohort of patients with known infections, we may be able to link these effects to those of patients whose infectious disease history is unknown. It’s got to be tough to go through this, especially not knowing if the syndrome is self-limiting or not.

  14. 14.

    wvng

    One of my great frustrations through all this is inability to get a sense of absolute numbers for a lot of this to put this illness into the proper perspective. I can find number of confirmed cases and number of covid deaths, and daily hospitalizations. What I feel a need to see are total # of individuals who have been hospitalized, # of people with extended covid illness, # of “long haul” sufferers, percentage/# of people who had “mild” illness who were not hospitalized but continue to have problems. That small German study that found 70% of asymptomatic and mild symptom cases had heart irregularities or myocarditis was startling.

  15. 15.

    geg6

    Students at my small campus start moving in tomorrow. Not including PA students, we have 28 states and 10 foreign countries represented. I will be back in my office, meeting with parents and students during move in and the drop/add period that ends next Friday. I’m not a happy camper about this, but I don’t have a choice in the matter. I really wasn’t given a choice, unlike the faculty. If I get infected, I’m going to be pretty pissed.

    I really wish I could retire.

  16. 16.

    Malovich

    This is the thing about novel coronaviruses that is absolutely bonkers that people cannot process. I really wish they would, we’d get a lot more compliance from the fence-sitters and social contrarians.

    The GOP death cult and their voters can go straight to hell.

  17. 17.

    CliosFanBoy

    Meanwhile, I am supposed to start classes Monday, wearing a mask AND a face shield, in a  classroom that can only hold maybe one-quarter of my students at a time. Oh, and my class time dropped from 75 minutes to 60 so they can stagger classes leaving and arriving (which was a good idea). So  I am teaching 100% online. I have tenure. Go ahead and make a stink.  I’ll be happy to answer threats with a nice letter from a lawyer.

  18. 18.

    TaMara (HFG)

    Notes from the recovery trenches:

    Shortness of breath ✔

    Extreme fatigue ✔

    Weird heart palpitations – have FINALLY subsided.

    April 13 – first symptoms and this week, other than sleeping A. LOT. (I’m assuming partly because of the travel and family stress) I am finally feeling more like myself. I’m back to cycling 30 minutes and am going to try for every day this week to gauge how I’m doing.

    But I will say that the extreme shortness of breath comes out of nowhere – feel fine for days and then wake up one morning gasping for air all day. So, I’m cautious on that front.

    And I had a “mild” case. The unknown here is a bit scary.

  20. 20.

    chopper

    @Mary G:

    exactly. assuming immunity lasts a year or two, this means 80+% of the country will need to get a covid shot every year.

  21. 21.

    Le Comte de Monte Cristo, fka Edmund Dantes

    @Mousebumples:

    Haven’t you heard? It is your patriotic duty to take on the unknown risk of lifetime poor health or death in order to:

    1. Make it more likely for Donald John Trump to have a second term by throwing your body into the economy; and

    2. Validating the greatness of conservatism by sacrificing yourself for it, without question.

    I regret that I have but one life to give in the service of and gratitude for Donald John Trump.

  22. 22.

    WaterGirl

    @TaMara (HFG): I admired how brave you were when you were going through it, and these past couple of months I have admired your grace in handling the ongoing symptoms that have to be distressing.  And the not knowing?  That’s really hard.

  23. 23.

    Old School

    I agree.  The long-term effects are what makes the “herd immunity” ideas dangerous.

    My father-in-law had rheumatic fever as a child.  He fully recovered and then as an adult, he had heart issues for the last 30 years of his life.

  25. 25.

    EmbraceYourInnerCrone

    @Eric U.:  I do appreciate the fact that the writer of the article mentioned this, because there is no Yale campus as such, Yale is spread out over New Haven,  and also West Haven (they bought the old Bayer property, its now the home of the Nursing school/West Campus.)  Add in Yale New Haven Hospital and all of it’s branches,  and life this fall is going to get interesting…

    “Additionally, because the campus is intertwined with the city — even bisected by Elm Street — though undergraduates are tested every few days, there are large swaths of city residents and sophomores living off campus who the school won’t test and who could possibly be part of an outbreak, Vermund added. “

  27. 27.

    Nicole

    My son’s school (elementary/middle) is starting all online and already there are parents who are really upset about it. The school is a pretty diverse mix of families, from very working class to very well-off, but it’s the well-off parents who are making a stink. And I don’t get it- I mean, I completely empathize with how hard online learning is- we’re tightening our belts hard because I’ll be on full-time kid watching- but everything I read from health experts all say opening schools is not a good idea. And all the info about long-haulers is really scary.

    A number of private schools here are opening with in-person instruction. I spoke with an educator friend yesterday and a friend of hers, who heads up one of these schools, says it’s pressure from the parents making them do it, and they anticipate being closed again by November. And I have no doubt the same parents demanding these schools open will not hesitate to sue those schools if/when their child gets sick.

    This all sucks so, so bad. But these are our kids. I don’t want to risk their long-term health for 18 months of struggling to make distance learning work.  And rather than giving money to families so they CAN stay home with the kids, we instead run a huge science experiment with our children as the guinea pigs.

  28. 28.

    gkoutnik

    Both colleges located in our small city – 7,000 students – are opening in person classes (hybrid model, but the students will be here).  The community spread numbers in our county have been pretty good this summer.  But how about the community spread numbers in the cities and towns that the students are coming from?  How can we talk about opening up campuses – or anything else – until the community spread in the entire country is brought under control?

    We say, “The virus doesn’t respect borders,” but also say, “You can open up if your community spread is under control.”  Doesn’t compute.

  30. 30.

    Hoodie

    Yeah, recent talk I’ve heard about a potentially lower threshold for herd immunity by some non-life sciences mathematicians and armchair epidemiologists is worrying because people will latch on to that too easily and ignore issues like this.  It may turn out to be true and would certainly be good news if true, but there simply has not been enough research to make any assumptions.

    Relatedly, I think the GOP has always danced with the dark side because their electoral success has generally relied on telling people that their own simplistic views of the world are inherently superior to scientists, judges, and other “expert” figures who had gained authority by established channels, such as education, experience in government etc.   My guess is that there was probably a lot of that type of populism before the Depression (e.g., in the 20’s), but the Depression scared the shit out of people (including a lot of the rich) and the relative competence of the Roosevelt administration in dealing with the situation dampened that particular impulse and restored some confidence in intelligentsia, especially after the perceived success in WWII.   It re-emerged with the election of a washed up B-movie actor and corporate shill to the presidency who told a susceptible public made vulnerable by the massive clusterfuck in Viet Nam and the attendant social unrest that government is the problem.  It’s endemic.

  32. 32.

    The Moar You Know

    If you think lockdowns are expensive, try having 10% of the US working population on permanent disability from COVID complications.  You can probably add another 2% who will be growing up COVID orphans and who will need help for a long time.   America will be broke forever under that financial burden.

    This admin won’t care.  In fact, pretty sure this is just the kind of thing their Russian employers wanted.

  33. 33.

    Barbara

    @geg6: Ugh.  My brother in law is a professor at the main campus and I don’t think he will be teaching in person at all.  He had a major cardiac event in January and I doubt he would survive an infection.

    Somewhat related, I went into a local bodega and noticed that they had put a detailed sign on the door about wearing masks.  The highlights were, “you have a right not to wear a mask and we have a right to protect our employees by not letting you into our store,” and wrapping up with, “Stop confusing inconvenience with oppression.”

    I hope mask wearing is not an issue for those you are coming into contact with.

  34. 34.

    Barbara

    @Nicole: More evidence that those of us who have been lucky in life are having a very hard time dealing with adversity.  But expecting others to take higher risks than we would take for ourselves is just an infuriating response.  And yes, I am incredibly disappointed that we are stuck with online learning here for now, but what else can we do?

  35. 35.

    CaseyL

    A friend of mine has a life-long cluster of strange conditions that intermittently flare up into potentially life-threatening acute phases.  I’ve been scared for her, since exposure to Covid-19 would wreak havoc on an already-havocked system.  But she’s been relatively fearless, having regular family gatherings – though not, I think, going out traveling as she used to do.  I think in her case, living with chronic conditions has made her a bit fatalistic: “Condition X hasn’t killed me, and neither has Condition Y, so what the hell.”

    Me? I took the antigen test, which came back negative.  That was a surprise.  I figured **everyone** has at least been exposed – particularly here in the PNW, and particularly since the virus was here long before we knew it was.  I figured the most relevant factors were quantity of virus load and duration of exposure, in terms of actually coming down with Covid-19.  It looks like I was wrong, and had the luck/carefulness to not be exposed at all.

    Which, to tell the truth, is scarier. Because I have to continue being absolutely vigilant, careful, and semi-hermetic.

  36. 36.

    Barbara

    @CaseyL: My antigen test was also negative, even though I had a month’s worth of mostly mild symptoms, starting with a dry cough, escalating to fatigue and fever, which resolved a few weeks before the cough did.  It’s possible the test was wrong, that my symptoms were too mild to register or that I had something else.  My working assumption is that I didn’t have it.

  37. 37.

    Fair Economist

    My concern, and hypothesis, about the long-haulers is that neurons can express the ACE2 target. CNS neurons are immunologically privileged – T-cells can’t normally kill them – because they are irreplaceable in adults. Coronaviruses are not generally lytic either – they don’t have to kill the host cell. So SARS2 can get into neurons, and once it’s there, it’s very difficult to get out. Neurons can control viruses replicating inside them via the interferon system, but that requires interferon and all the flu-like symptoms it creates (interestingly pretty typical of long-haulers). It’s also very possible the RNA interference system also serves to control viruses. All the same, I think it’s likely – and terrifying – that COVID is producing long-term neurological infections

    @The Moar You Know:

    If you think lockdowns are expensive, try having 10% of the US working population on permanent disability from COVID complications.

    Amen.

  38. 38.

    Miss Bianca

    @TaMara (HFG): I’ve been citing your “mild case” symptoms while hammering the locals here about “why the theater hasn’t opened up again yet” and “why everyone needs to be wearing masks and practicing social distancing still”.

    And our school just opened up again today. The betting figure on when they will shut down again? I gave it a generous six weeks, the librarian gave it two, my editor and I have settled on four – two weeks to confirm that yes, indeed, cases have spread throughout the school community, and two more weeks to go completely online.

  39. 39.

    geg6

    @Barbara:

    I expect about a week of classes and then we’ll all be online again.  I have few expectations of success in this endeavor.

    Mask wearing has not improved much here, though the infections have decreased locally the last few weeks.  It really depends on where you are.  In Target and Giant Eagle stores, it seems to be pretty universal.  Walmart is a nightmare.  There are a few local restaurants that are taking a lot of chances for my taste.  And the new Shell cracker plant, with all of the out-of-state workers mostly from places like OK, TX and LA based on the license plates I see on the giant pickups they all drive like lunatics, has been a vector of infection locally.  Although I have no faith in Shell’s commitment to safety on the construction site, I see these people out in the community and they are assholes.

    I’m very pessimistic at this point.

  40. 40.

    Fair Economist

    @Miss Bianca: I think 2 to 6 weeks is a good range, because it will depend on the local response. With active monitoring, it will be 2 weeks because they’ll catch the spread in the school. With casual responses, it will be 4 weeks because that’s when secondary spread is obvious in the community. With denialism, 6 weeks, because that’s when the secondary cases start dying.

  41. 41.

    BC in Illinois

    Even aside from the long-term health effects, I don’t think that the herd immunity people have thought through the effects of tens of thousands of unnecessary deaths.

    My brother died last night from Covid-19. He had been exposed at work to someone who had gone to a family gathering in July. My brother, who was fairly observant about masks and distances and the like, admitted that they were not so consistent about wearing masks continuously around co-workers. When the co-worker went into the hospital, all the workers were tested. My brother tested positive and quarantined at home. That lasted for a week or so before he came down with a fever and low blood oxygen level and went to the hospital. There he got better. Until he didn’t. ICU. Oxygen level down. Blood pressure down. Then he got better. Until he didn’t. Ventilator on Monday. They called his wife in to say goodbye. He died Tuesday night.

    Now. Death comes to us all. Every family has the experience of accidents, illness, death. But death in a pandemic does have its differences. In a normal time (like last year), I would be making arrangements today to fly to Maryland. The family in Maryland would be gathering at the sister-in-law’s house. But she has been quarantined at home herself. People bring by soups and salads, but mostly it’s all done at a distance. Arrangements beyond that? We will see.

    And here is where Facebook life kicks in. I wrote an overnight article about my brother on my FB page. Today I look at comments on the article and see who has shared the article and look at their comments. I look at pictures that my daughter put on her page and the comments and shares there. Dozens of people have “reached out” to me. On FB. By email. By text. Not real life, but that’s what I have . . . and it’s not nothing.

    Not real life, but I have appreciated the  contacts of so many people – supporting me, my family, my sister-in-law, her family. It’s like a real funeral, where people I don’t know tell me about what they knew of my brother, or of their contacts with those who loved him. (When my first daughter died, back in the ‘70s, I was really touched by how many people came to see me, then I realized that half of them were coming to be a support for my mother.)

    That’s sort of normal. But nothing is normal in pandemic times. The people that think that we can just “herd immunity” our way through this, have no idea what the real-life effects will be, of what they’re prescribing.

  43. 43.

    Johnny Gentle (famous crooner)

    @ant: They’ve simply never accepted that it has any serious or lasting effects. To them, only sickly, old and black people have any real risk of severe symptoms or death. If you don’t live in a nursing home or New York City, you’ll be fine.

    If they actually do hear stories about long-haulers, it means nothing to them because there must be some underlying health or demographic reason why this happened to them, because the virus simply isn’t that bad. I mean, “Only a 2% death rate” is their mantra.

    It’s human nature to believe you’re special and will somehow be excepted out of something happening to everyone. Compound that with the internet-fed stupidity and paranoia of today’s republicans and you can see why they’re not just oblivious about COVID but actually prone to conspiracies and violence about it.

  46. 46.

    Miss Bianca

    @BC in Illinois: Oh, oh, oh. So, so sorry to hear it. My condolences.

    I am so torn up about how badly we are handling this. There are thousands of stories like yours out there, all unique, all similar, all heartbreaking.

  47. 47.

    beth

    @BC in Illinois: I am so sorry for your loss. I’ve always been a loner kind of person so when my husband died I was surprised how much I appreciated having supportive friends and family with me – I can’t imagine how hard it is to do alone. The affect on people’s mental health from this virus is greatly underestimated in my opinion.

  50. 50.

    Nicole

    @Barbara:

    More evidence that those of us who have been lucky in life are having a very hard time dealing with adversity.

    Yeah, this.  Someone posted somewhere that (mainly white) Americans are very unused to hearing, “no” and they’re right. As a result, we are not well equipped to deal with something that is not open to demands to speak with the manager.

  51. 51.

    geg6

    @BC in Illinois:

    My deepest sympathies to you and your family.  Another awful and unnecessary death, another family torn by grief and still no leadership.  Vote in honor of your brother.  Have all your relatives do the same.  It’s all we can do right now, but it isn’t nothing.  Peace to you and yours.

  53. 53.

    TaMara (HFG)

    @Dorothy A. Winsor: You can always ask! I’m working under the assumption that my struggles with Covid-19 will help others as they encourage everyone to wear a mask or if they are going through it themselves. When I found out one of my clients had it, it was like finding a 4-leaf clover for both of us, just reassuring to share symptoms and recovery.

  58. 58.

    Tom Levenson

    @BC in Illinois: I’m so sorry to hear of your loss.

    There aren’t good words at such moments–fewer at this one. But I wish all possible comfort for you and your family.

  60. 60.

    Barbara

    @BC in Illinois: I am so sorry.  My brother died unexpectedly two years ago, and if he had gotten sick this year — whether from Covid or from the terminal cancer that killed him — I would not have been able to support him in the last weeks of his life.  That makes death even harder to bear.  Sending heartfelt condolences to your entire family.

  63. 63.

    Medicine Man

    Mild case here too, back in spring.

    Does anyone have experience with mild nausea in the morning? I’ve noticed this in my case – post recovery – and am wondering if this is due to COVID after-effects.

  64. 64.

    arrieve

    @BC in Illinois: I am so sorry for your loss. And for your poor sister-in-law going through losing her husband while being quarantined herself. Having friends and family around you is one of the things that helps the most after a death, and it’s one of the worst parts of this pandemic that it’s taken that little bit of consolation away from us.

  65. 65.

    Kay

    My middle son came got tested yesterday when he went in for stitches for a gash on his leg. I was surprised by that – he didn’t complain of anything other than the cut on his leg. He said they took his temp but no one said it was high and I took his temp and it’s normal. He doesn’t mind that he was tested and he’s glad he’ll get results because he did a job in a nursing home here that has two cases, now, not when he did the job.

  67. 67.

    Zelma

    @BC in Illinois:

    Deepest sympathy.

    I think all of us are doing much of our living online these days.  It’s not like being with people, but thank goodness we have it.

  71. 71.

    Amir Khalid

    @BC in Illinois:

    I’m sorry your brother had to suffer, and like the rest of the Jackaltariat I grieve along with you and your extended family. I feel the same way about herd-immunity strategies: the cost in what bereaved families must endure on that path is too high — needlessly high.

  72. 72.

    Marcopolo

    BC, so sorry to hear this. I’m making a donation to Jill Schupp in your brother’s memory today. Really hoping you wake up on Nov. 4 with a new congressperson who actually represents your values & will take this pandemic seriously. And when it is safe to get back to such things, we’ll do a St Louis BJ meet up where you can tell me a little about your brother over a couple beers. Until then, stay safe & take care of yourself & your loved ones.

  76. 76.

    Phein60

    @geg6:   After two days of classes, Illinois Wesleyan has 10 new cases: small, private DIII college, but in a town of 200K+.  That’s cases among students; they aren’t telling us numbers among faculty/staff.

  85. 85.

    beth

    @Medicine Man: my daughter is a long hauler and has noticed certain foods make her body aches and nausea worse – for her it’s gluten, refined sugar and dairy. She’s never had any problems with these foods before. It may help to keep a journal of your symptoms along with the foods you’ve eaten.  If you’re having nausea in the morning without having eaten anything obviously this wouldn’t help.

  86. 86.

    Lyrebird

    @BC in Illinois: Another voice… without great phrasing but with heartfelt condolences.  May his memory be a blessing and may you be surrounded by love even in this awful time.

  87. 87.

    Ohio Mom

    Adding my condolences, BC in Illinois. What a roller coaster his illness was — sick enough for the hospital, getting better, no, getting worse, looking better, no, he isn’t… That had to be a horror to go through.

    Here’s hoping you and your family are able to find solace in knowing the doctors and nurses tried their hardest, that all of you did exactly what needed doing, that many are grieving with you and sending you all their virtual support. May you also find comfort in your memories.

  88. 88.

    StringOnAStick

    @BC in Illinois:  I’m so very sorry for your loss.

    Facebook has a few uses, and comfort and contact at a time like this, when you can’t see family and friends in person is certainly one of them. Facebook should be a public utility..

  90. 90.

    Jean

    Distressing to hear the news about your brother, BC in Illinois. Many of those commenting here or on FB, may be virtual friends, but their feelings are genuine and real.

  93. 93.

    geg6

    @Phein60:

    We’re so small, we can’t even make DIII.  Our varsity athletes compete in the USCAA.  Our student population is only about 600.  We are one of the smallest PSU campuses.  If we get just a few cases, it will be a major emergency.

  96. 96.

    satby

    @BC in Illinois: Deepest condolences on the loss of your brother. I hope there will come a time not too long in the future when you can gather with your family and celebrate his life together.

  99. 99.

    MomSense

    @BC in Illinois:

    Oh, BC I am so sorry.  It makes me so angry that this has happened to your family.  Sending peace and love to you and all of your extended family.

  100. 100.

    J R in WV

    @BC in Illinois:

    So sorry for your family’s loss. We’re lucky so far that no one close has suffered from Covid-19 at all, but I’ve lost my family’s whole elder generation just from getting old, and one whole set of cousins way too early from using tobacco.

    Hang in there, know that there’s a big group of online jackal folks who know you and sympathize with your loss.

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