(Try To) Make Sense of Long COVID
Throughout the pandemic, I’ve received messages every day from people asking about long COVID. I also have a handful of patients who have suffered (or are currently suffering) from a long tail of symptoms following an infection with SARS-CoV-2. Indeed, this virus is a lot more than “mild” for a small subset of patients.
That said, I’ve hesitated writing a newsletter about long COVID, largely because 1) the data on post-COVID symptoms is messy, and 2) caring for patients with vague symptoms is an art and a science, one that requires a firm grasp of data, and a careful understanding of the patient at hand.
On the latter: Mental and physical health are intrinsically linked. Our bodies and minds are in constant communication. This is not to say that all people with vague symptoms without a clear medical cause are mentally unwell. Not at all.
I’m simply saying that:
Having vague symptoms that affect one’s quality of life and that doctors readily dismiss or can’t figure out is emotionally distressing in and of itself.
Emotional distress has very real physical manifestations. (The fact that these statements are at all controversial underscores why we continue to fail to recognize that mental health is health.)
Just last month I was able to finally diagnose a patient (who never had COVID) with autoimmune hepatitis after many visits to specialists and after she’d been diagnosed as having an anxiety disorder by a psychiatrist. Sure, she was anxious! Who wouldn’t be, after months of inexplicable fatigue and weight loss? So now, we’ll address her anxiety and her liver issues in tandem.
In other words, we have to talk about long COVID with nuance. We can’t simply say “It’s all in their heads” (the battle cry of the long COVID “minimizer” camp). We also can’t shout out: “Fifty percent of people who get COVID will get long COVID!!!” (the hot take of too many mainstream media outlets).
So what do we know about long COVID and how can we sort through the mess of data? I have many thoughts.
Symptoms
The symptoms of long COVID are wide-ranging—from fatigue and headaches to brain fog and joint pains. If we decide to attribute them entirely to infection with SARS-CoV-2 (i.e., long COVID in the classical sense), the symptoms are hypothesized to be a result of either lingering viral particles in the bloodstream or the body’s immune response to the virus.
While these mechanisms make sense intuitively, they are still under investigation. So before we conclude that anyone with long-lasting symptoms after COVID has one of these processes going on and not something else, we need to think broadly about how other infections—and other diseases and social determinants of health—affect our bodies.
Indeed the biggest challenge is that the symptoms of long COVID overlap with and mimic so many other conditions, including hypothyroidism, peri-menopause, stress, anxiety, and mental exhaustion, that accurately diagnosing long COVID in the sense of “I-had-COVID-and-therefore-I-now-have-long-COVID” is next to impossible.
Not every symptom after COVID is due to COVID
To put a small stake in the ground given my experience seeing patients for twenty-two years—including those with post-viral syndromes, autoimmune conditions, and the complex array of emotional and physical manifestations of stress, dysregulated bodily functions, and trauma due to major life transitions—I’d wager that many patients with the above symptoms are suffering from what I might call “long pandemic”—i.e., symptoms due to:
27 months of stacked stressors
exacerbations of underlying conditions
the onset of new, sometimes undiagnosed medical conditions that happened over the last two years.
To be clear: This is not to minimize the real and ongoing suffering from COVID itself. It’s to honor people’s unique pandemic experiences and to help people manage the myriad health challenges they face—one of them being COVID itself.
Like most of my colleagues in primary care, I’m seeing an increased number of patients with diabetes, hypertension, high cholesterol, heart issues, musculoskeletal woes, anxiety and other mental health challenges 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 from stress—all of whose symptoms could be inappropriately labeled as “long COVID” when their roots are much more complicated than the transient presence of a single virus.
And I’m worried that we’re inappropriately lumping these folks in with people with long COVID in the classical sense of the term.
This is a real problem. Why? Because assuming that anyone with a long tail of symptoms after COVID always has lingering viral particles in their bloodstream or a hyperimmune response to them runs the risk of denying people the information and tools they need to navigate the very real physical manifestations of flaring or new-onset arthritis, diabetes, heart disease, hypothyroidism, depression, anxiety, and PTSD, for example.
In short, we risk further depriving people of much-needed conversations and resources to manage bread-and-butter physical and mental health challenges that are part of the human condition.
These non-COVID related issues—whether it’s a flare of rheumatoid arthritis or post-traumatic stress—need to be addressed in the appropriate ways. That is our job in medicine and in public health. But they are mechanistically different from the classic post-viral syndromes like Guillain Barre that we sometimes see following other viral infections like Coxsackie virus or Influenza or even gut bacterial infections like Campylobacter. Guillain Barre is rare. Only a few thousand people get it per year, despite the tens of millions of people who encounter these pathogens.
If we could separate out these non-infectious issues from classical long COVID, I suspect we would find out that long COVID (in the sense of a true immunologic post-viral syndrome) is also rare. The few robust studies on long COVID support this conclusion; more on that later.
Mainstream media often misrepresent the incidence of long COVID
Mainstream media tend to publish long articles about COVID long haulers, featuring photos of people staring downward disconsolately, their faces half in the dark. I have no wish to diminish anyone’s suffering. I also have no doubt that the people in these articles are suffering from a constellation of syndromes. But the problem with these articles is that they mostly feature anecdotes, they catastrophize that patients may never get better, and they tend to exacerbate people’s anxiety in an already anxious time.
In medicine, our job is not to sensationalize or to sugar coat, but rather to replace fear with facts—and to help determine the underlying infectious, environmental, genetic, emotional, behavioral, and social causes of patients’ complex symptoms.
Let’s also keep in mind that hundreds of millions of Americans have now had COVID. Our best estimate is upward of 200 million people. When you take this denominator into account, it’s not surprising that millions of people may be suffering from some kind of classic post-viral syndrome because even 3% of 250 million is 7.5 million people. In this way, SARS-CoV-2 is likely not causing anything different from what happens with other viruses; we’ve simply never had never 250 million people come down with a single virus in such a short amount of time.
Even during the flu pandemic of 1917-1919, there were significantly fewer Americans in existence. Plus, we have poor data about how many of the survivors may have had post-flu syndrome. We simply will never know.
If we agree that we’ve failed to appropriately distinguish between the conditions of long COVID and what I’m calling “long pandemic”, it’s not surprising to me that many people do not feel “back to normal” after COVID. And, really, why would they?
And if we’ve inadvertently scared people about their risk for long COVID, it’s also not surprising that in the setting of a highly contagious variant like Omicron, we’ve accelerated the emotional, behavioral, and mental health toll on people who already were suffering from the distress of the last 27 months.
At the end of the day, I don’t have answers for all of you, dear readers. I only have empathy and compassion for the diversity of experiences and health challenges during COVID (among them being COVID itself).
And to my patients with classical long COVID or a long tail of symptoms after COVID that we’re still working to fully tease out, I’m with you!
What do the best (albeit far from complete) data tell us?
The data from the best studies we have are reassuring. High-quality data (importantly, with control groups) out of Israel last month showed that people who get a breakthrough infection after vaccination report no more long COVID symptoms than those who never had COVID at all.
The CLoCk study out of the UK is the largest study on long COVID in teens. It showed how rare long COVID is and also assessed the mental health status of teens. As pediatric infectious disease expert 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.”
Nearly everyone, including children, got better eventually, which means after about 8 weeks. It is also not unusual for symptoms to linger after a virus, particularly a respiratory virus, sometimes for a month or two.
Let’s also remember that it’s normal to be deconditioned after being “down and out” from any infection and to need time and patience to build back our stamina and cardiovascular reserves.
It’s also crucial to remember that correlation is not the same as causation: Just because robberies and ice cream eating are both highest in July does not mean that eating Rocky Road means you’ll get mugged. In other words, studies showing that people frequently have brain fog after COVID in my opinion are highly confounded. These studies show associations, not causality, and are riddled by so many other problems that I do not put much weight on their findings.
Over and over, media reports have touted these studies on long COVID as though whatever finding turned up on a CT scan after COVID was due to COVID itself. I’m not sure what to say here except that fear drives clicks.
(Note: Fear-based headlines are not always inappropriate or wrong. There’s a lot to be terrified about. But reading the news requires a good filter these days!)
Preventing long COVID
One of the most frequent questions I get is “How can I protect myself from getting long COVID?” The short answer is that getting vaccinated is the best protection for all things COVID. The other ways to try to delay your exposure to coronavirus are the same as we’ve been discussing for two-plus years: avoiding crowded, indoor, poorly ventilated spaces as much as you are willing and able; using a high-grade, well-fitting mask as desired, and managing your underlying health conditions that might put you at higher risk for poor outcomes (i.e., obesity, diabetes, etc.)
It may turn out that Paxlovid, the oral antiviral medication to treat COVID in high-risk patients, helps reduce the risk for long COVID in its ability to tamp down viral replication. This is under active investigation and is not a reason right now to run out and get Paxlovid for mild symptoms in generally healthy people.
A nasal version of the COVID vaccine also shows promise for reducing the risk of infection and perhaps the risk for long COVID, too. More on that in a future newsletter.
At the end of the day, remember that the vast majority of people who get COVID do not have any lingering symptoms.
And other than the above, there’s not a lot you can do to prevent the possibility of long COVID. This doesn’t mean that getting COVID is inevitable; it’s that an exposure to coronavirus is—unless, of course, you’re willing and able to seal yourself off from other people in perpetuity.
There really is no silver lining here, but there is one bright spot. Now that so many people have (unfortunately) had this viral infection all at once, we have the opportunity to actually learn and understand better what causes these thorny post-viral syndromes and make some progress treating them.
Biomedical research brought us our amazing vaccines and therapeutics. We will also make progress managing and treating these syndromes in the future. This gives me hope for my patients with chronic fatigue syndrome, chronic Lyme, and other post-infectious symptoms that can last for months to years.
Until then, we need to do the best we can, be patient with ourselves, and live with the fact that we do not know exactly what long COVID is or how to separate it from the array of bodily symptoms that stem from the last 27 months of life interrupted.
— new on the podcast! —
When NASA engineer and director Andrea Razzaghi began working at NASA, the sign on the restroom door said “WOMAN”—because she was the only woman there.
In my newest episode of Beyond the Prescription, I talk with Andrea about the challenges of being a woman of color in a male-dominated field and her remarkable journey from engineering student to Director of the NASA Office of the Jet Propulsion Laboratory Management Oversight.
Together, we talk about finding common ground with people from different backgrounds, managing stress using mindfulness techniques, and the role of humility and compassion in leadership positions.
Download it tomorrow, and don’t forget to rate and review it!
I will see you next week. Until then, be well.