Sunday, January 9, 2022

Long Covid Lament

Now if real daylight such as I remember having seen in this world would only come again, but it is always twilight or just before morning, a promise of day that is never kept. What has become of the sun? That was the longest and loneliest night and yet it will not end and let the day come. Shall I ever see light again?
—Pale Horse, Pale Rider (1938) by Katherine Anne Porter, survivor, 1918 influenza.

An open letter to Michael Osterholm, epidemiologist. His weekly podcast The Osterholm Update is an excellent source of current Covid-19 information.

Dear Dr. Osterholm,

Having listened to your thoughtful and informative podcasts ever since they began, I’ve wanted to share my own beautiful place with you in the eight pictures below.1 These acres of conifer forest surrounding my home here in the inland Pacific Northwest have long been a sanctuary for the bear and cougar and all the other wildlife whose tracks I see in the winter snow and the soft earth of spring. For the bald eagles and owls and hawks who soar high overhead.

Winter pictures taken last week.

The challenges of our time still intrude here, with more wildfires each summer and a local population that remains mostly unvaccinated, even now. But these woods have been my sanctuary, too, as I’ve walked and worked and meditated beneath big pines, fir, and larch that were just saplings during the influenza pandemic of 1918. They were here long before me, and I’m doing what I can to give them a chance at still standing after I’m gone.

None of these tracks was made by a human.

After hearing you talk about your work on tallgrass prairie restoration and continuing to ask for listeners to share their beautiful places, I figured you’d appreciate seeing these photos of mine. For many hours, I’ve listened to your voice in my earbuds while controlling noxious weeds, harvesting deadfall for firewood, and thinning the smaller trees that are too close together to thrive. Yours has been a comforting but also honest voice, keeping me informed without sugarcoating the bad news about each wave of new cases, without ego, without false promises. Thank you for the work you do.

———

I would like to be equally honest and continue with some words that are not intended for you to read on your podcast but for you to take into your heart as you inform the public each week about the dangers of the SARS-CoV-2 virus.

It’s about the devastating persistent symptoms that so many people are now enduring after their often mild acute infections. They gave it a name, Long Covid, to describe month after month of terrifying mental and physical limitations, of a fatigue that often goes far beyond just a sense of being tired all the time. Many of them experience this so-called fatigue as a relentless profound exhaustion that leaves them utterly spent after basic household tasks, or even getting out of bed to go to the bathroom. Their brains are fogged, their ears are ringing, their noses don’t work, their bodies have become prisons of pain and loss and disability.

This open letter is for them, to give voice to what they know all too well. And in hopes that our public health experts will finally start to talk about what has happened to them, and is happening right now to so many more.

For the people like PJ Morrison, who has been dealing with the aftermath of her Covid-19 infection for 22 months now. In the early stages, she felt “like her veins were on fire–pulsating and raised.” That has mostly quietened down, apart from those in her hands and ankles. “My feet and hands don’t work well now,” she says, and she can no longer dance or run or even put on a coat without help. She’s looking for the small wins where she can, like last month when she celebrated managing to get in and out of the bath unaided and six weeks earlier when she was finally able to walk without pain.2

Byn Always (that’s her real name, under which she’s written a couple of books) knows all too well about the limitations imposed by Long Covid. A doctor visit just sent her to bed to sleep for 33 of the 36 hours afterwards, “unable to even sit up for more than ten minutes while awake.” If she goes beyond her strict energy budget, she winds up with vocal tremors so severe that she can barely talk. The limitations extend beyond the physical realm; she used to love to read but now her brain fog gets in the way of that.

As with most long haulers I’ve corresponded with, it’s not just what Byn can’t do anymore, but also the many unwelcome sensations that impose themselves on her. She gets an “internal buzzing” and tinnitus that comes and goes, and her eyes sometimes hurt, feeling “like someone tried to jab them from my eye sockets all night.” She’s in her early 50s, a mother of five.3

Of course all this is affecting their ability to work, and that adds another level of emotional as well as economic pain. Marjorie Roberts says she and her fellow longhaulers “are being punished for contracting this awful virus which has changed our lives forever.” She’s been fighting for an unemployment hearing since April 2021, after contracting Covid in March 2020, “at my place of employment but was denied benefits.” She was told–undoubtedly by somebody who either does not know or care about the need for rest to avoid post-exertional malaise–that contracting Covid-19 was not a valid reason for her to resign. She now lives with disabling daily fatigue, as well as spots in her liver, nodules and sarcoidosis in her lungs, and the loss of seven teeth. She feels ignored and discarded.4

I could go on with quite a few more of these stories, just from people I’ve interacted with personally online, like Daria Oller, a physical therapist and athletic trainer who got sick on March 15, 2020 and went through a period when her post-exertional crashes left her unable to lift up her head, sometimes even to speak. She’s doing better, though “nothing like who I use to be” and now dealing with a significant setback from a recent reinfection. She’s 37.5

Like Denise Martin, 54, who was infected in April 2020 and then again in November of 2021–after being vaccinated. She’s retired after a 28-year nursing career and was already living with chronic illness before Covid came along. Never hospitalized, hers would have been classified as one of those “mild” cases, but she’s traumatized from the experience of struggling to breathe, and now struggles to even get out of bed.6

I’ve read firsthand accounts by hundreds of others.

Dr. Osterholm, you surely must know that this is not a rare thing. According to a meta-analysis of dozens of studies that was just released ahead of publication in Brain Behavior and Immunity, about a third of people are experiencing that symptom so innocuously labeled as “fatigue” three months after their Covid-19 diagnosis. Just over a fifth of them are exhibiting cognitive impairment at that point.7

These figures are disturbingly high, but they match what was already revealed by another multi-study review published in JAMA Network Open: Infectious Diseases back in October. There, the median prevalence for “fatigue or muscle weakness” was found to be around 38%, and around 17% for cognitive impairment. The authors determined the median prevalence of overall Post-Acute Sequelae of Covid-19 to be around 50%, a figure that changed little when looking at short, intermediate, and long-term time periods.8

The commonly accepted conservative estimate is that 10% of people with Covid-19 will go on to develop Long Covid.9 With 60 million reported cases in the U.S., even that much lower figure equates to several million of our fellow citizens now facing long-term consequences of having been infected. These are terrifying numbers. And as you often say when speaking about Covid-19 death statistics, they represent much more. They are loved ones and friends and actual human beings.

Before the snow, September 2021.

How can any epidemiologist not talk about this?10 Just from the aftermath of the Delta variant, we are very likely facing a national and global wave of largely hidden adversity and disability not seen in any of our lifetimes. And we just don’t know yet whether Omicron will result in less Long Covid, do we? Hopefully so, but as you like to say, hope is not a strategy.

———

Well, OK, but we have the vaccines, now, right? Still providing some decent protection against “severe disease” and death. Unfortunately, the studies are showing that Long Covid remains a significant risk even for infections that occur after vaccination.

You’ve acknowledged that these so-called “breakthrough” cases are not rare and have been warning for months about the danger of variants evading our vaccines. Well, Omicron has shown that your crystal ball isn’t quite as mud-covered as you modestly protest. It appears that those of us with all three shots of an mRNA vaccine still wind up about half as likely to be infected by this highly transmissible new variant as people who never got vaccinated.11 That means a lot of breakthrough cases heading our way.

With those odds of being infected by the variant that is exploding across the country now, it seems that we really ought to be paying attention to how much risk of long-term sequelae a post-vaccination infection entails.

Let’s get one important thing out of the way: There are definitely fewer firsthand accounts on Twitter and Reddit from people who developed Long Covid from a post-vaccination infection. I’ve seen just a handful rather than hundreds. Two of them responded to an inquiry I posted on Twitter.12

One had her sense of smell and taste disturbed for three months, with the common “rotting flesh” scent and almost everything tasting and smelling awful. Things appear to be improving now.13 Another correspondent, a fit middle-aged man in Texas who’d gotten all three shots before he was infected, was “fatigued, fogged, no appetite, ear ringing and worried this won’t get better” for two weeks. He has started feeling better now in his third week, though the fatigue still hits him as the day progresses.14

I want to be respectful with the stories of these two people who have reached out to me. You don’t want to be infected by this nasty little pathogen if you can possibly help it, vaccinated or not, but these are not the kind of traumatic and disabling outcomes that Daria and Byn and Marjorie are living with. For them, vaccine protection is a cruel fiction, a life preserver that never made it into the water before some part of them drowned.

Unfortunately, the studies are leaving us with little room for complacency even when it comes to breakthrough cases. One published in The Lancet showed that the risk of symptoms lasting more than four weeks is approximately halved for those who were infected after a second vaccine dose.15 We are talking about long-term consequences of an infection, and I view that glass as half empty, not half full. The work being done by Dr. Maxime Taquet and his colleagues at the University of Oxford suggest that it’s mostly empty, with no statistically significant reduction in risk for developing many Long Covid symptoms six months after a breakthrough vs unvaccinated infection, and little reduction for almost all symptoms.16

Some studies have shown a modest protective effect, such as one posted just a few days ago by researchers at Bar-Ilan University in Israel, where both testing and vaccination rates are high.17 They found the usual disturbingly high occurence of people reporting a less than full recovery, about a third, with those “fully vaccinated . . . 36-73% less likely to report eight of the ten most commonly reported symptoms.” As with The Lancet study, the observed risk reduction was, in aggregate, about half.18 Doesn’t seem all that reassuring.

The individual symptoms are what stand out to me, though. Remember that little word “fatigue” that is plaguing and limiting the lives of people like Daria or even my Texan correspondent three weeks after his triple-vaxxed breakthrough case, both of them with more than half their lives ahead? It showed up at basically the same rate, vaccinated or not, for those in their age bracket, and around 40% as much overall. Same for the “loss of concentration” that’s keeping Byn from reading like she used to. Same for the “persistent muscle pain” that PJ understands all too well.19

Another study (still in pre-print, as with most of the research happening in this fast-changing area) of breakthrough cases recorded in the VA health system showed a similarly discouraging lack of risk reduction. It was not even statistically significant for symptom clusters labeled “Neurologic,” “Musculoskeletal,” “Mental Health,” “Kidney,” and “Gastrointestinal,” and barely so for our old friend “Fatigue.”20

Do Look Up!

Why do your listeners never hear about any of this? It’s a question that honestly puzzles me. A person who has gotten their Covid-19 information exclusively from your podcast for the past year would be well served in many ways, but would not even know that Long Covid exists, much less what a significant threat it poses, even with the vaccines.

Dr. Osterholm, one of your strengths as a public health expert is your use of clear everyday analogies to describe difficult situations. As someone who has delighted at seeing big deep hoof tracks in these woods, I particularly liked how you told us a few weeks ago about the value of a good set of tires and brakes while driving down a country road where moose were likely to be crossing. It was a memorable way for you to warn us to be prepared for what’s coming with Omicron.

I’d like to suggest one more important piece of equipment: a pair of headlights. We can’t stop in time to avoid hitting something that we never see. A lot of people depend on you to let them know what is ahead. Considering the extreme risk we all face of being infected by this vaccine-evading variant, it seems we ought to be lighting the road ahead as brightly as possible.

With respect and appreciation,
Edwin A. Suominen
Triple-vaccinated, still uninfected, and worried

Notes

  1. As with my other nature photography, I am releasing these photos under the Creative Commons Attribution-NonCommercial license. ←

  2. PJ Morrison, Cork, Ireland. “Writer-Comedian-Poet–in a body that doesn’t work so well–needing humour & strength to escape those telling me “ah sure it’ll be grand,” https://twitter.com/​wastelessme. ←

  3. Byn’s Weird Brain, Midwestern USA. “Longcovid knocked me on my ass (early 2020 & counting) I don’t even know who I am anymore,” https://twitter.com/​BynThereDoneTht. ←

  4. Dr. Marjorie Roberts, Georgia, USA. “Mom, wife, veteran, covid-19 survivor, advocate,” https://twitter.com/​DrMarjorieRobe1. ←

  5. Daria Oller, PT, DPT, ATC, New Jersey. “Physical Therapist, Athletic Trainer, Tap Dancer, Runner, Burlesque Performer, Education Co-Director Long COVID Physio,” https://twitter.com/​OnTapPhysio. ←

  6. Denise Martin, Bristol, England. “Mental health campaigner. Retired mental health nurse. Ginger cat lover,” https://twitter.com/​whatsdeedoing. ←

  7. Ceban F, Ling S, Lui, LMW, et al. “Fatigue and Cognitive Impairment in Post-COVID-19 Syndrome: A Systematic Review and Meta-Analysis,” Brain, Behavior, and Immunity (2021 Dec 29), https://doi.org/​10.1016/j.bbi.2021.12.020. ←

  8. Groff D, Sun A, Ssentongo A, et al. “Short-term and Long-term Rates of Postacute Sequelae of SARS-CoV-2 Infection A Systematic Review,” JAMA Network Open: Infectious Diseases (2021 Oct 13), https://jamanetwork.com/​journals/jamanetworkopen/​fullarticle/2784918. ←

  9. See, e.g., Dr. Nisreen Alwan’s Tweet of January 7 about the situation in the UK: “A reasonable conservative prevalence of LC (>3m) is 1 in 10 out of all those infected. This is based on updated ONS estimates in Sep 2021,” https://twitter.com/​Dr2NisreenAlwan/status/​1479566880197206022. ←

  10. It’s been over a year since Episode 24 (“Long Haulers”), and it just doesn’t seem to get mentioned on the podcast anymore. ←

  11. For Moderna, see Hung Fu Tseng, Bradley Ackerson, Yi Luo, et al. “Effectiveness of mRNA-1273 against SARS-CoV-2 omicron and delta variants” (2022 Jan 8), https://www.medrxiv.org/​content/10.1101/​2022.01.07.22268919v1. The two doses most “fully vaccinated” people have has a VEI of around 30% at best (i.e., they have about 70% the risk of infection as someone unvaccinated), dropping to zero after six months. The third shot starts out above 60% VEI, dropping to 49% for those who received it on or before October 21, 2021.

    These results are if anything optimistic compared to the findings of the UK Health Security Agency’s 31 December 2021 briefing, which shows a third shot of the Moderna (mRNA-1273) vaccine having an initial efficacy of around 60-75% against symptomatic infection. The efficacy (again, against symptomatic infection) with two shots of Pfizer (BNT162b2) drops to essentially zero after 20 weeks. With a third shot, it starts out at around 65% and drops to around 50% by the tenth week.

    These are of course both pre-prints; Omicron appeared just six weeks ago. ←

  12. My inquiry Tweet (with a thread of follow-up Tweets) was seen almost 25,000 times, yet resulted in just two reports of lingering symptoms after breakthrough infections that I was able to follow up on. This runs counter to my overall narrative, but must be discussed candidly. https://twitter.com/​edsuom/status/​1478058813873799169. ←

  13. Lisa Joseph, https://twitter.com/​LisaJos21457910. ←

  14. https://twitter.com/​WallStCrime. ←

  15. Antonelli M, Penfold R, Merino J, et al. “Risk factors and disease profile of post-vaccination SARS-CoV-2 infection in UK users of the COVID Symptom Study app: a prospective, community-based, nested, case-control study,” The Lancet: Infectious Diseases (2021 Sept 1), https://doi.org/​10.1016/S1473-3099(21)00460-6. See esp. Figure 3. ←

  16. Taquet M, Dercon Q, Harrison P, “Six-month sequelae of post-vaccination SARS-CoV-2 infection: a retrospective cohort study of 10,024 breakthrough infections” (2021 Nov 8), https://doi.org/​10.1101/2021.10.26.21265508. ←

  17. Kuodi P, Gorelick Y, Zayyad H, et al. “Association between vaccination status and reported incidence of post-acute COVID-19 symptoms in Israel: a cross-sectional study of patients infected between March 2020 and November 2021” (2022 Jan 6), https://doi.org/​10.1101/2022.01.05.22268800. ←

  18. As with all of these observational studies, the picture is a bit clouded by complicating factors. Participants were self-selected with a low survey response rate, few had ever been hospitalized, some of them had a third shot or were infected before vaccination, and no children were included. And the paper leaves the nature of their “adjusted regression model” so unclear that I am choosing to ignore the adjusted results.

    “We adjusted for the difference in follow-up time and proportion of asymptomatic patients at the time of diagnosis between the groups. In addition, to take the anticipated age differences into account, the analysis was age-stratified and differences in the length of time from the beginning of symptoms to responding to the survey were adjusted for in the model.” Meaning what, exactly? ←

  19. Table 3: “Crude and adjusted risk ratios for the most frequent post COVID symptoms among partially and fully vaccinated participants compared with unvaccinated ones.” ←

  20. Ziyad Al-Aly, Benjamin Bowe, Yan Xie, “Long Covid after Breakthrough COVID-19: the post-acute sequelae of breakthrough COVID-19” (2021 Nov 15), https://doi.org/​10.21203/rs.3.rs-1062160/v1. ←