Welcome to my Friday Q&A. Last week I wrote about managing viral infections. The week prior was about COVID, Paxlovid, and managing anxiety. Today is about long COVID.
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Photo credit: Eva Davis
While most people fully recover from COVID, this virus isn’t “mild” or self-limited for everyone.
For nearly three years, many of you have written to me asking for my thoughts about long COVID. I have a handful of patients who have experienced a long tail of symptoms after COVID — each with a unique set of issues.
So to be honest, I’ve avoided writing a newsletter about long COVID for several reasons:
Long COVID is poorly defined, and now that most Americans have been infected with SARS-CoV-2, the diagnostic waters distinguishing COVID-related health issues from non-COVID-related complaints is muddy at best.
The data on long COVID are a mess, in part because of the absence of clear definitions and because of a paucity of prospective studies with control groups — and the last thing I want to do is use anecdotal evidence to drive any suggestions.
Long COVID has become an ideological battleground. While one camp insists that anyone with brain fog after COVID is “mentally ill,” another contingent calls COVID a “mass disabling event.” Neither extreme is true, of course, and I cringe over the absolutism about suffering.
Caring for patients with non-specific symptoms is an art and a science. It requires a firm grasp of data, a thorough understanding of the patient at hand, and a healthy dose of humility.
In other words, no two patients with non-specific symptoms or any post-viral syndrome are the same. We have to talk about long COVID with nuance. It’s not appropriate to say “It’s all in people’s heads” (the battle cry of long COVID “minimizers”). Nor should we shout from the hilltops: “One in five adults who get COVID will get long COVID!” (the hot take of too many mainstream media outlets).
As with most things, the truth lies in the gray area.
So, what do we know about long COVID and how can we sort through this mess? I have many thoughts.
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The data
Let’s start with one of the best studies on long COVID to date, published this month in JAMA Open Network. Click here for an excellent video “explainer” about it by my friend and UCSF Professor Dr. Vinay Prasad. This is a high-quality study because it measured patient-reported symptoms (and not merely imprecise diagnostic codes from patient charts); it was prospective (i.e. it studied people going forward in time); and, most importantly, it used controls (i.e. it compared patients who were sick with a non-COVID respiratory virus with patients who had COVID to identify the base rate of post-viral symptoms in general). The study suggests that, for most people, the tail of symptoms from COVID is not significantly different from the tail of symptoms from other viruses.
Other high-quality data out of Israel this year showed that people who get a breakthrough infection after vaccination report no higher frequency of COVID symptoms than those who never had COVID at all.
My friend Emily Oster summarizes it well here:
My sense, putting this all together, is that persistent symptoms of fatigue, loss of smell, and coughing happen to a reasonable proportion of adults post-COVID, even after mild breakthrough infections. In some cases, these take months to resolve. But my sense is also that things like the CDC's claims that COVID causes a dramatically elevated risk for pulmonary embolism and substance abuse disorder — the most significant disability and disease risks that they attribute to long COVID — are likely overstated by the lack of a reliable set of control individuals. This is triangulation, though. It’s informed triangulation, but others may well triangulate differently.
(Emily temporarily unlocked her full post about long COVID for my readers here. Thanks, EO!)
What about kids? This well-executed study in JAMA found a low prevalence of symptoms compatible with long COVID in a randomly selected cohort of children assessed 6 months after serologic (blood) testing. Here is pediatrician Dr. Alasdair Munro discussing the most recent data on long COVID in kids. In addition, the CLoCk study out of the UK is one of the largest studies on long COVID in teens. It showed how rare long COVID is and also assessed the mental health status of teens. Nearly everyone, including children, got better eventually, on average after 8 weeks. As pediatric infectious disease expert Dr. Shamez Ladhani commented about this study: “In conclusion, a year into the #COVID pandemic, teens were experiencing a wide range of symptoms often unrelated to #SARSCoV2 infection. That 1 in 3 teens reported feeling worried/sad/unhappy highlights the mental toll of the pandemic, lockdowns & social isolation on teenagers.”
(It’s been fascinating to witness these two experts in pediatric infectious disease get blamed for dismissing long COVID by dispensing data and nuance — sigh.)
Are there myriad other reports on long COVID that can either reassure us or scare the pants off us, depending on which internet rabbit hole we go down? Yes! Can COVID directly trigger diabetes, postural orthostatic tachycardia syndrome, or autoimmunity in a susceptible host? Absolutely! Can COVID affect any and every organ system, depending on the person? Of course.
It’s just crucial to remember that correlation is not the same as causation — i.e., just because snow storms and gingerbread consumption both peak in January doesn’t mean you’ll get wet making cookies.
Symptoms
The symptoms of long COVID are wide-ranging — from fatigue and headaches to brain fog and joint pains. If we decide to attribute a patient’s symptoms entirely to infection with SARS-CoV-2 (i.e., long COVID in the classical sense), they are hypothesized to be a result of either 1) lingering viral particles in the bloodstream or 2) the body’s immune response to the virus.
To be clear: these mechanisms are still under investigation. It’s also not new information that viruses of all varieties can have long tails of symptoms and can trigger post-viral syndromes.
So before we conclude that anyone with long-lasting symptoms after COVID has festering virus in their body or a hyperactive immune response, we must think broadly about how other respiratory infections — and the experience of living through a pandemic — have the potential to affect our health. This, again, is why controlled studies are so critical as we investigate long COVID.
Indeed the biggest challenge is that the symptoms of long COVID overlap with and mimic symptoms from so many other conditions, including hypothyroidism, menopause, neuropathies, cardiovascular disease, stress, anxiety, and mental exhaustion.
Like most of my colleagues in primary care, I’m seeing an increased number of patients with diabetes, weight problems, high blood pressure, joint pains, anxiety, depression, insomnia, fatigue, heart palpitations that began — or flared — during the pandemic, either from the absence of routines, wobbly relationships with food and alcohol, relative inactivity, missed doctor’s appointments, and/or stress itself — all of whose symptoms I could easily label and code as long COVID, and call it a day. But the roots of patients’ issues are much more complicated than is typical for a single virus.
COVID is no picnic for many people. Viral infections can set us back for weeks or months depending on our age, underlying health, immunity and vaccination status. True long COVID is real. But pinning broad and diverse health challenges on a single virus is not appropriate given the current data. It’s also too easy.
Complex problems require complex solutions.
To be clear: This is not to minimize the real and ongoing suffering from COVID. It’s to honor the heterogeneity of health challenges since March 2020. It’s to acknowledge the harder-to-measure yet no-less-important toll of stacked stressors on the body and mind.
I worry that by assuming that anyone with a long tail of symptoms after COVID has lingering viral particles in their bloodstream or a hyperimmune response to them, we run the risk of denying people the information and tools they need to manage the actual problem(s) they’re dealing with.
Prevention & Treatment
It makes intuitive sense that vaccinated people would have a lower risk of developing long COVID. This is what the best data to date seem to show.
Does Paxlovid reduce the risk of developing long COVID? Based on my interpretation of the data, we just don’t know.
There are many promising studies suggesting that Metformin (the first-line treatment for type II diabetes) might be effective in preventing and treating long COVID.
Of course, not getting COVID at all would reduce the risk of getting long COVID, but the downsides of sealing oneself off from society are real.
Upshot
At the end of the day, I don’t have all the answers for you, dear readers. I have data to suggest that, for most people, post-COVID viral syndromes are similar to other post-viral syndromes. I also have empathy and compassion for people diagnosed with long COVID — and for the diversity of health challenges during the pandemic, among which is COVID itself.
The good news? Now that so many people have (unfortunately) had COVID, we have the opportunity to better understand what causes these rare but thorny post-viral syndromes — and to make progress in treating them.
This gives me hope for my patients with MS, chronic fatigue syndrome, myalgic encephalomyelitis, post-viral postural hypotension and dysautonomia, and other post-infectious syndromes.
Until then, we must live with ongoing uncertainty about COVID while appropriately addressing the very real toll of the last three years on our bodies and minds.
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Thanks for mentioning “Internet rabbit holes.” At the very beginning of the pandemic, I was gung ho for all kinds of restrictive measures. Then I realized I had a really hard time with masks. I overheated, had glasses fogging, had hot flash-type symptoms, basically turned into a sociopath. My discomfort led me to seek alternatives, and I started learning about the different factions on MedTwitter. One by one, I muted the alarmists, came to distrust reporting from the NYT and my beloved WaPo, and came across the Urgency of Normal group of physicians. Thank heavens the “alt middle” is there to calmly explain SARS2, and to discourage the hysteria we’ve come to know so well.
Dear Dr McBride,
I just want to tell you how much I appreciate your column/newsletter and your dedication. I wish I had you as my PCP.
I also wish I were in a better financial position so that I could upgrade to paid and contribute to this wonderful gift you provide us with.
I'm 66 and grandma to a delightful 16-month old and have an enduring interest in science (one of my favorite radio programs is Science Friday with Ira Flatow).
I just discovered the Urgency of Normal website and am so pleased that I can recommend it to friends who work in the education sector or who have children of school-going age.
Thanks for all you do and hoping the New Year is a better one for all!
maia tabet