Long-haul COVID and the chronic illness debate

Naah Allotey, right, processes COVID-19 testing paperwork prior to testing a patient at NYC Health + Hospitals/Harlem on Dec. 22, 2020. (James Estrin/The New York Times)

In The New York Times' Sunday Magazine about a week ago, there were two powerful stories about so-called long-haul COVID — a form of the disease that seems to leave certain patients permanently sick, creating a legacy of chronic illness that may be with us long after vaccines have consigned the pandemic's acute phase to the past.

One was a first-person account by my colleague Laura Holson, detailing her nine months with the disease: the initial terrifying springtime surge of symptoms, and then the persistent ones — low fever, brain fogs, mild chest aches — that were punctuated, in her case, by a brief return of the more frightening ones, the crushing chest pain and racing pulse and gasps for air. Her story ends with sustained improvement, movement "in the right direction" as doctors like to say, but still a shadow of fatigue eight months after she got sick.

The other story, by Moises Velasquez-Manoff, follows patients like Holson but also others who haven't enjoyed even her level of improvement, and the doctors and scientists who are trying to figure out what's happening to them — with "them" meaning anywhere from 10% to 50% of COVID-19 patients, depending on the study and the definition of long-term symptoms.

I wrote about long-haul COVID last summer, when it was still an emergent phenomenon, and at that point I tried to offer some practical lessons for people dealing with it, from my years of experience with an enduring illness, the medically contested chronic form of Lyme disease.

In Velasquez-Manoff's exploration, many of his sources also draw analogies to forms of chronic illness that predate COVID. For instance, one possible parallel to what long-haul COVID patients are experiencing is myalgic encephalomyelitis, commonly known as chronic fatigue syndrome — a debilitating and mysterious affliction that's increasingly understood as an autoimmune-related condition, in which the body's own defences seem to be constantly flaring, independent of actual infection, in ways that consign people to fatigue, brain fog and incapacity.

Similar autoimmune theories are also often applied to the larger constellation of chronic conditions that bear some similarities to what we've seen from long-haul COVID: chronic Lyme, multiple sclerosis, rheumatic fever, Guillain-Barré syndrome, various psychiatric conditions that seem to be caused by persistent inflammation in the brain.

And as with COVID, for many of these conditions, there appears to be some precipitating infection. Multiple sclerosis is often associated with the commonplace Epstein-Barr virus, rheumatic fever with the same bacteria that cause strep throat, and Lyme, famously, with bites from ticks that carry a spirochete called Borrelia burgdorferi. Chronic fatigue syndrome isn't known to have a single agent as its trigger, but as Velasquez-Manoff notes, chronic-fatigue-like symptoms have long been linked to viral infections, from the recent SARS and H1N1 pandemics to the 1918 Spanish flu.

This means that a key unanswered question, for COVID long-haulers now as for other chronic sufferers, is what happens to the infectious agent over the long term of the disease. Past a certain point, is the agent itself gone, and everything that patients like Holson feel just the immune system running amok? Or are people who have some of these conditions really suffering from a persistent infection, from a pathogenic invasion that the immune system keeps exciting itself by trying and failing to suppress?

Given the range of chronic afflictions and the diversity of human beings, the safest answer is simply "It depends" — that different things can happen to different people, that as Velasquez-Manoff writes, the varying long-term reactions to a trigger like a coronavirus infection shouldn't necessarily be thought of as "a single syndrome at all."

But the particular case of Lyme disease brings the question to a sharper point, because more than for other chronic conditions, treatment for Lyme has become deeply polarised. There is an official consensus that regards "post-treatment Lyme-disease syndrome" as a problem without a clear cure, and then a smaller faction of doctors who are certain that the infection itself persists and can be treated, with antibiotics and other drugs, in ways that gradually bring most patients back to health.

As it happens, the minority view — that chronic Lyme is actually a chronic infection, not just an autoimmune response or a psychosomatic malady — has a new defence this month: a book called "Chronic: The Hidden Cause of the Autoimmune Pandemic and How to Get Better Again," written by Dr. Steven Phillips, a Lyme practitioner and researcher, and one of his patients, the musician Dana Parish.

The book makes the case that the spread of what the authors call Lyme+, an array of tick-borne pathogens that often infect patients simultaneously, is responsible not just for the more than 400,000 cases of Lyme disease diagnosed each year in the United States but also for an unknown number of chronic infections beyond that — undiagnosed or misdiagnosed and left untreated because of a combination of testing failures, institutional bias and the horrible complexity of the diseases themselves.

Then further, they argue that most of these cases can be treated effectively. Many people who are told they have a condition that can only be managed, not eliminated — to say nothing of the people told "It's all in your head" — could claw back toward normalcy, if not always perfect health, with a long-term regimen of oral antibiotics and a doctor who's willing to work with them to figure out which drug combination works.

In the specific (but in their view, quite broad) case of Lyme, in other words, they are rejecting what Velasquez-Manoff calls the "scary permanence" of the chronic-fatigue-style diagnosis greeting many long-haul COVID patients. Even if issues specific to individual immune systems help make some Lyme cases long-term and others not, the infection itself is usually still there, usually still treatable, and those with the worst symptoms don't have to suffer in the same way forever.

"Chronic" offers a mix of scientific research and clinical and personal experience to make this case; if you are particularly interested in the questions it raises, I also recommend reading "Cure Unknown" by Pamela Weintraub, the best journalistic account of the Lyme controversy, and dipping into "Conquering Lyme Disease," by Brian A. Fallon of Columbia and Jennifer Sotsky — a more cautious and academic account.

But I have a particular reason to highlight the Phillips and Parish book, because Phillips is also my physician, with whom I have worked off and on for much of the last five years. I like to think that I would find his argument convincing on its own terms, but my bias is obvious and overwhelming, because his treatments have been crucial to my unfinished recovery from Lyme.

Not them alone: I have tried a lot of things on my own in pursuit of recovery. But nothing I've tried was as essential, as obvious in its stabilising, lifesaving effects, as months and months of high-dose antibiotics. When I didn't take them, on the advice of doctors who insisted that they had no long-term benefit, I slipped away day by day into the dark. When I took them and stuck with them, when I acted on the reasonable belief that persistent symptoms reflect persistent infection, I began to clamber back toward life and light.

That's just one man's testimony, and if chronic Lyme has some striking similarities to chronic COVID, there are obviously manifold differences — starting with the basic fact that one infection is bacterial and the other viral.

But for all the people — doctors and patients both — struggling to figure out this new long-haul condition, the medical establishment's possible misunderstanding of chronic Lyme is an important signpost, a possible cautionary tale. As Phillips and Parish put it, in their book's COVID-era afterword, there's an "echo chamber in the medical community that defaults patients who develop chronic illness after an acute infection, to a 'post-viral' or 'post-infectious' syndrome, without deep exploration into the likelihood of ongoing infection. We fear that long-term COVID patients will be resigned to the same fate."

I worry about the same thing. Living through the coronavirus era after spending so many years in the world of Lyme disease is a strange experience because you can see all kinds of different pieces of the tick-borne epidemic refracted strangely in the COVID pandemic — disputes over testing, mysterious and shifting symptomatology, expert failures and medical populism, and controversies around what it means when the disease just hangs around indefinitely. (Even the theory that the coronavirus escaped from a laboratory in Wuhan, China, has counterparts in the theories surrounding Plum Island, the US biowarfare laboratory in Long Island Sound that just happens to sit near the epicentre of the Lyme epidemic.)

One thing we're definitely doing better with long-haul COVID than with Lyme, chronic fatigue syndrome and all their strange companions is taking the lived experience of long-haul patients seriously — probably because we have so many of them all at once — instead of treating them as weaklings or hypochondriacs.

But I want to believe that we can do better still — and that like the many people restored from Lyme with actual treatment, not just patience, there are people suffering from months and months of COVID misery who will eventually be lifted back to health.

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