The Varieties of Long Covid
There's now a scoring system for long Covid. But it doesn't convey the varieties of people's experiences with it.
A former collaborator of mine was in town last week to give a departmental lecture. I was asked to join him and another colleague for dinner afterward. I wasn’t sure how to answer.
For the last fifteen months, I’ve been recovering from long Covid. It’s given me, among other things, dysautonomia to such a degree that my doctor featured a video of me on her Twitter feed as a lesson to other doctors, brain fog that recondenses within hours if I forget a dose of medicine,1 internal tremors like those well-known to people with Parkinson’s or multiple sclerosis, and chest pain N.O.S., “not otherwise specified,” meaning we can’t figure out the cause despite a couple rounds of testing.
Dinner would be at Gertrude’s, annex to the Baltimore Museum of Art and local staple for crab cakes. That boded well: it’s nearby where I live, so getting there would be little effort, plus there’s outdoor seating just off the museum’s sculpture garden. I’d also been resting the past five days since my last outing, and was starting to regain some steam (not to be confused with fog).2 I accepted the invitation.
When we arrived, the host informed us that the patio area was closed for a private event. The only open tables were inside. I took a calculated risk3 and rather than bow out, I went in.
My undergraduate major was international relations, and for my senior seminar I studied military analysis. I recall learning that during Operation Desert Storm, tank operators would shovel mounds of sand in front of their vehicles, not even a few feet high, for the small but non-negligible protection it gave.
That’s how I see masking in situations like dinner out. I mask up for the Etch a Sketch walk to the dinner table and unmask when seated. It’s not as irrational as it looks. I take my cue from the tank crew.
Dinner was a win. I bonded with my old collaborator, learning we have more in common other than our malaria research. We were born just two years apart, grew up in small working class hamlets, and our fathers both fell on hard times after losing their jobs in an economic downturn.
My colleague, meanwhile, politely and guardedly asked where I’ve been all year. I told him, and he replied I was the first person with long Covid he personally knew. This is something people with long Covid are often told. Despite the media reports of tens of millions, we are not sure where all the others are.
He added, “My impression from what I’ve seen in the media is that long Covid is usually not that bad.” That’s understandable, now that we know the early reporting was wrong about the rate, debility, and persistence of long Covid.
I think the data will ultimately show that genetics determines the difference between long Covid that is “not that bad” and long Covid that is life-altering. Other things will matter, too, such as the viral strain, amount of virus, previous infections, and underlying health conditions. In my case, genetic testing (done for reasons other than long Covid) identified a mutation in a protein that affects mitochondria and neurons, both contenders in long Covid pathogenesis.
But long Covid does not just differ in degrees of badness. It differs in the myriad ways its symptoms can express and configure themselves. Medical jargon can be literary sometimes: we say a disease like this is “protean.”
Over two hundred symptoms have been ascribed to long Covid. Mix and match, and there are more varieties of long Covid than there have ever been waves in the ocean. Take the thirty-seven most common symptoms, and the possibilities still outnumber all the humans who have ever lived.
Datasets of such size are the grist of machine learning algorithms. In June, the RECOVER Consortium published a symptom-based scoring system for long Covid. They list a dozen symptoms, ranked in order of how much more likely they are to occur in people with recent SARS-CoV-2 infection than people not infected. Each symptom was assigned a value between one to eight points. A total of twelve or more points makes a diagnosis of long Covid likely.
My score is sixteen, well inside long Covid territory. But even if you score less than twelve, it does not necessarily mean you do not have long Covid. The protean nature of long Covid means there are varieties just rare enough that big data methods, indifferent to the underlying biology, will miss their significance. My rash, internal tremors, borderline oxygen level, and my type of chest pain do not register on the RECOVER scale.
My advice to patients with long Covid who are having a hard time getting through to their doctors is to show them the JAMA article, or other landmark papers on long Covid from recognizable journals.4 Print it out and bring the hardcopy to your appointment. You shouldn’t have to do this, but the reality is that clinic is hectic, time constraints (and digital eye strain) are real, and there is a constant bombardment of information that vies for a clinician’s attention. The science of long Covid is building, but that doesn’t mean your doctor is aware of it. They may not only be unaware, but may be unattuned to becoming aware. It didn’t have to be that way.
William James delivered the Gifford Lectures at Edinburgh University in 1901 and 1902, later collected as The Varieties of Religious Experience. He was a physician-philosopher, a writer on the level of Melville, and a thinker after the transcendentalist tradition who went on to espouse an approach to reasoning that was experiential, empiric, and pragmatic.
In The Varieties, James championed the importance of subjective experience, the practical consequences of beliefs, and the inherent value of open-minded inquiry. Gertrude Stein, who studied under James at Harvard, wrote of him later: “He said ‘never reject anything. Nothing has been proved. If you reject anything, it is the beginning of the end as an intellectual.’”
Twentieth century science could have conformed to a Jamesian way of thinking. But it was the rigid formalism of James’ contemporary Bertrand Russell that dominated.
James’ approach gives berth to wide ranging ideas. He famously said, “A universal proposition can be made untrue by a particular instance. If you wish to upset a rule that all crows are black, you mustn’t seek to show that no crows are; it is enough if you prove one single crow to be white.”
As a medical doctor, and specifically as an infectious disease specialist, and even more specifically as an infectious disease specialist with long Covid, I wonder whether long Covid will prove a white crow amid present theories of health and reconstitution. The orphan diseases of chronic Lyme, myalgic encephalitis/chronic fatigue syndrome, fibromyalgia, and countless other white crows N.O.S. might also discover their parentage. The quantum states of receptors and ligands may matter more than we think,5 previously unrecognized neurotransmitters could be revealed to reside in our basal ganglia, and the mind-body interface of neuroimmunology might be tapped.
To go a step further, despite recent literature suggesting long Covid may be no different from other post-viral syndromes, there are disquieting features of long Covid that seem to set it apart. Disruption or rewiring of neural pathways occurs in some patients, and concrete changes to brain structure have been documented. Some patients develop stuttering for the first time in their lives, or experience psychotic episodes which, unlike most other causes of psychosis, they remain eerily conscious of.
If there turns out to be prosaic explanations for these, then James invites us to ask another question: When, if ever, do we stop searching for a white crow?
I am grateful to Alida Orzechowski for reviewing a draft of this essay.
L.D.N.
In the classical tradition of bad humors.
This is my second episode of long Covid, the first lasted 18 months, and I am wary of resetting the clock if I were reinfected.
Leave a comment or message me if you have difficulty accessing an article that you would like to show to your doctor. The JAMA article is openly available here.
This article reviews the possibility of a quantum explanation of olfaction, a sensory modality of special salience to Covid.
Your essays are balm to my soul.