People with long Covid face an uphill battle convincing skeptics their malady is real – but discrediting uncommon conditions is hardly a new phenomenon
Before the coronavirus pandemic swept through New York City like a foaming white storm surge in the spring of 2020 and irrevocably displaced the trajectory of her life, Hannah Davis was an expert in artificial intelligence and machine learning. She gave talks on her projects, which included working with a computer program that generated music from literature, at Ted conferences, technology expos, even the Library of Congress.
Toward the end of March 2020, as the first wave was gathering speed and the number of new cases in the US was inching upward toward 20,000 a day, Davis was living in the Bedford-Stuyvesant neighborhood of Brooklyn – an area that would become one of the hardest-hit communities in the borough. She was stocking up on supplies one final time at a local grocery store before sheltering in place when she believes she got infected with Covid-19.
In the days that followed, Davis, who is 33, experienced a debilitating array of symptoms that only partly matched the symptomatology broadcast by major media outlets and published by health agencies. While she registered a temperature of 100F and felt chills and fatigue, she was also experiencing headaches, tremors and neurological manifestations.
When she traveled to a local emergency room, the doctor seemed to dismiss the non-respiratory symptoms she anxiously detailed, sending her home with a prescription for an albuterol inhaler.
She scheduled a telehealth appointment with a neurologist to address her piercing headaches and the bewildering cognitive issues that were ravaging her productivity, but the physician suggested she was probably just suffering from symptoms of ADHD, which she’d been previously diagnosed with – which she found “really frustrating and concerning”.
By 14 April, Davis had been sick for three weeks. By then, Covid-19 had become omnipresent, a second sun around which all our lives now orbited. The version of it Davis was experiencing, however, was completely absent from the sky.
Scouring the web for anything that might validate her experience, she discovered an opinion article in the New York Times written by Fiona Lowenstein, titled We Need to Talk About What Coronavirus Recoveries Look Like. In it, Lowenstein recounted experiencing “fatigue, intense headaches, continued congestion, a sore throat, trouble focusing and short-term memory loss” a month out from her initial infection.
The confusing constellation of symptoms, and the way they waxed, waned and evolved, looked all too familiar to Davis. She joined Lowenstein’s online support group for Covid-19 survivors, Body Politic.
Visiting the group, which is hosted on Slack, was like walking into an overcrowded waiting room bustling with frightened patients whose escalating sense of internal crisis mirrored her own. Many were discussing everything the CDC, NIH, NIAID, CNN and Fox were not, including the unreliability of negative PCR tests and the lingering symptoms that were starting to look an awful lot like chronic illness.
Though they had no way of knowing it at the time, members of the Body Politic were among the nation’s first “longhaulers” – and their condition was initially met with intense doubt from many. After all, the coronavirus was supposed to be a flu-like virus that subsided in a matter of days, with the worst cases lasting perhaps two weeks.
Suffering from symptoms for longer was to be wading into uncharted territory, one that started evoking questions about stress, psychological health and personal credibility.
On 24 April, Davis found herself on the “research group” channel of the Body Politic. The group was created by Gina Assaf, a technology consultant, and she and others discussed the possibility of putting together a structured survey. “I was very motivated by the idea that, if there was a reason we were still sick, then I could fix it,” Assaf said.
Davis, who had experience in data analysis and machine learning, immediately volunteered to help glean the responses. Several other people, including Lisa McCorkell, a policy analyst, Hannah Wei, a product developer with experience in computer science, and Athena Akrami, a neuroscientist at University College London, also offered their respective expertise.
After 12 days, Assaf closed the survey; by then, it had been filled out by 640 members. A deep trove of data now in hand, the fledgling research team went about analyzing it. Though it was never peer-reviewed and only included one traditional research scientist (Akrami), the report nevertheless featured a relatively sizable data set, sophisticated quantitative analysis, and a number of highly legible visualizations illuminating the group’s findings.
The report offered a number of stark revelations: for one, it blew open the notion that that illness was limited to the respiratory system. It listed 62 self-reported symptoms, including not only chest tightness, dry cough and elevated temperature but also brain fog, concentration issues, memory loss, dizziness, insomnia and even seizures. Over 90% of the respondents had not yet fully recovered. The group also found that the participants had less than a one-in-five chance of making a recovery by day 50 of their illness.
They wondered whether the report could influence a national conversation tucked snugly inside a familiar binary framework: life on one hand, and death on the other.
The group – which by then had assumed the name Patient-Led Research Collaborative to reflect the history of patient participation in medical research – worked with Lowenstein and the Body Politic to put the report in front of journalists and patient organizations.
On 13 May, two days after the report was released, the prominent journalist and HIV-Aids activist Ann Northrop mentioned it on her podcast, Gay USA. Later that month, the Atlantic science writer Ed Yong interviewed several members of the group for a piece he was putting together on longhaulers. The story, which was published in early June and would eventually be read over a million times, linked to the report and discussed its findings over several paragraphs.
“They absolutely know more about this condition than academics do,” Yong told me. “I think they were asking interesting questions, they had a big data set. To this day, this is one of the only groups that has really tried to look at the arc of these symptoms over time.”
But Yong also lamented the fact that members of the PLRC and other longhaulers were facing a steep uphill battle in convincing skeptics that their malady was real.
“One of the central things about long Covid is that people are disbelieved,” Yong said. “They are told that their symptoms are in their heads, or that they’re just suffering from anxiety, that they’re going through psychosomatic stuff. It’s all the same attitude that people with ME/CFS and other similar illnesses have had to deal with for a long time.”
Yong’s piece – part of the series that won him a 2021 Pulitzer prize in explanatory reporting – would prove to be a crucial spotlight. “From there, we started getting calls from the CDC and the NIH,” Davis recalled. Suddenly, the lines of communication with officials at America’s foremost health agencies were wide open, and the PLRC’s data ultimately “informed a lot of the early CDC documentation on post-Covid sequelae”, Davis said.
When I spoke to Jennifer Chevinsky, an epidemic intelligence service officer with the CDC, she confirmed that her team consulted the PLRC while writing the interim guidance for post-Covid conditions. “Their work was used to better understand illness in patients that were younger and previously in good health,” she said.
In early September 2020, the NIH’s director, Francis Collins, dedicated an entire blogpost to the “citizen scientists” of the PLRC who had published what he called the “first detailed patient survey” investigating long Covid.
By the end of that summer, McCorkell recalled, they had “seats at tables that we previously did not have”.
In April 2021, the UK’s Office for National Statistics put out data showing that over a million citizens were experiencing long Covid. And most of these cases were not mild, either. The report notes that “an estimated 674,000 people reported that their symptoms have negatively impacted on their ability to undertake their day-to-day activities”.
Those are astonishing figures for a country whose population is slightly more than one-fifth of America’s, offering a sharp counterpoint to the notion that the vast majority of individuals make full, expedient recoveries from their bouts with the virus.
(While it’s too early to tell whether the Omicron variant triggers long Covid in numbers equal to those of its predecessors, it’s all but certain that the total number of longhaulers will increase after the surge has subsided.)
Discrediting uncommon conditions is hardly a phenomenon novel to the age of Covid. Multiple sclerosis has been around for hundreds of years – descriptions of the illness date back to the 14th century – and scientific research into it started at least as early as the 1860s, when Jean-Martin Charcot, who would come to be known as the father of neurology, first described “la sclérose en plaques” – sclerotic plaques, or lesions, in the brain and spinal cord.
Nevertheless, for a century following Charcot’s revelations, women presenting with the classic symptoms of MS were often diagnosed with hysteria instead. Though MS is now estimated to be up to four times more prevalent among women than men, by the middle of the 20th century it was still being diagnosed equally among both genders. But while doctors were diagnosing men with a neurological disease in which the body’s own immune system attacks myelin (the protective sheath wrapped around nerve fibers), most of the women presenting with the same symptoms were understood to be suffering from a psychological malady that was somaticizing into a host of physical ills.
It was a double-standard that flourished, at least in part, because the people who stood to lose the most from it had been stripped of their believability. They were, after all, deemed by their own physicians to be crazy.
More recently, those suffering from myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS – a condition I myself live with – have been subjected to similar misdiagnosing and psychologizing.
The illness, despite thousands of scientific papers attesting to the biological validity of the condition, remains a Gordian knot for which no conclusive diagnostic markers exist. When it cropped up in the hundreds in several small communities in Lake Tahoe in the 1980s, it was widely mocked and summarily dismissed by the local media. For years, the mysterious, polarizing “Tahoe flu” was regarded by many doctors with cagey skepticism at best; at worst, they were convinced something bizarre and even untoward had happened in the Sierra Nevada Mountains, perhaps a modern episode of mass hysteria.
“Young doctors in the 1980s were often advised by senior physicians not to become associated with an illness that didn’t yet have a scientific explanation, because their efforts to try to help their patients could be viewed by others doctors as quackery,” said Anthony Komaroff, a professor of medicine at Harvard Medical School and one of the foremost experts on ME/CFS.
According to Komaroff, “there is no longer a basis for being skeptical about whether there are underlying biological abnormalities in ME/CFS”. Those who remain wary of the illness, he believes, “simply have not read the published scientific literature on the subject”.
Though the chapter largely faded into obscurity, it left an air of dubiousness wreathed around ME/CFS for decades: here was a condition with a strange, vaguely off-putting history, a phalanx of detractors, and patients whose credibility had been repeatedly called into question. Perhaps, many doctors seemed to conclude in the 1990s and 2000s, the best way to think about such a quagmire of a condition was to not think about it all – to steer clear of diagnosing it, and generally avoid the burden and stickiness of acknowledging its existence at all.
The way physicians discuss relatively unknown, unestablished conditions can quickly become dyed into the wool, codified among general practitioners and specialists and understood as red flags delineating what conditions might not actually be biological illnesses at all – and therefore best avoided or referred to a psychiatrist.
When presented with a condition they know little about or, worse, a cluster of symptoms they’ve never encountered before, many doctors have historically done one of two things. Either they’ve psychologized the malady, attributing it to a psychiatric cause – hysteria, conversion disorder, somatization – or they’ve assured the patient that there’s nothing actually wrong with them, and they just need to relax and rest.
“A real thing that happens in medicine a lot of times is that when we don’t understand something,” said David Lee, an ER physician at NYU, “we just try to explain it away rather than accept that, ‘Hey, maybe we just don’t understand this.’”
Or, as Harvard pulmonary physician Jason Maley put it, “I think that there’s definitely a risk, if there isn’t a rigorous description of a condition, for people to assume it’s not real, or it’s anxiety, or it’s not a big deal.”
The term now routinely employed to describe this phenomenon is gaslighting. Physicians hold a great deal of authority in a society with a predominantly reverential stance toward them. In part because of their status, acquiescing to the limits of their knowledge is not a practice that comes naturally to most doctors. By telling patients that the physical symptoms they’re experiencing are conversions of their psychological ills, clinicians are effectively releasing themselves of their obligation to treat conditions with complicated etiologies. Instead, they’re passing the buck back on to the sufferer.
That such a maneuver is destructive to the patient practically goes without saying. When a person is told that her pain, fatigue, visual disturbances or cognitive dysfunction is a manifestation of psychological illness, she is forced into a position of confusion, vulnerability and self-recrimination. “It causes trauma,” Davis said. “It causes medical PTSD.”
After all, when patients are told that their symptoms either don’t exist or are all just the florid projections of a delusional mind, what are they supposed to do with that information? Referrals to psychiatrists notwithstanding, the practice creates a clinical dead-end, leaving patients with no coherent treatment plan and zero actionable steps to take toward their own recovery. It’s not just that a psychosomatic diagnosis is offensive to many people because of its troubled history and dismissive implications; it also discards them into medicine’s wastebasket.
The downstream effects of medical gaslighting mean that legitimate biological diseases are marginalized, to the point where clinicians become wary of taking them too seriously for fear that the aura of skepticism that plagues the condition will come to stain them, too. It can take decades for sufferers to slough off the stigma – the effluvium of doubt, the condescension and contempt, the faint but unmistakable intimations of madness.
This past August, I spent several days visiting Davis at her home in Brooklyn, in the borough’s industrial Gowanus neighborhood. Aside from two trips a week to grab groceries and run errands, daily walks, and the occasional get-together with a friend, Davis rarely leaves the two-bedroom apartment she shares with her partner, Myk Bilokonsky. The entrance, framed by two black bookcases lined with copies of authors ranging from Dostoyevsky and Joyce to Philip K Dick and Neil Gaiman, led into a modestly sized living room where tabletops were cluttered, variously, with plants, supplements, orange prescription bottles and the odd Rider Tarot deck.
A thin, unaffected smile penciled over her fair-complexioned face, Davis greeted me in what I assumed were her pyjamas – she was barefoot, wearing a graphic tee and baggy cotton pants. It was an outfit she would wear different iterations of each day I visited her. Though a few symptoms had abated over the previous year, Davis was still grappling with debilitating cognitive dysfunction, memory loss, low-grade fever, and postural orthostatic tachycardia syndrome, a condition that causes a person’s heart rate to spike when they stand up or walk around.
Nearly a year and a half had passed since she first developed symptoms from the coronavirus, but she was nowhere closer to returning to her fulfilling career. “I miss it,” Davis said. “I haven’t admitted to myself that it’s over.”
Although Davis is not paid in her capacity as one of the co-leads and co-founders of the PLRC, the position is, for all intents and purposes, her full-time job (to pay her bills, she relies on Bilokonsky, a computer programmer, and a few small stipends from her research work with other organizations). She and other members of the team have started publishing research in academic journals with increasing regularity – including a recent collaboration with the National Covid Cohort Collaborative – and are continuing to pursue projects that will progress through the traditional peer-review process.
In addition to the data analysis she carries out for these research papers, Davis participates in several Zoom calls every single day. In the short time I visited her, she had calls with the American Academy of Physical Medicine and Rehabilitation; the World Health Organization; the Department of Health and Human Services; and the Council for Medical Specialty Societies, among others.
Even though long Covid has stripped her of so much of her sharpness, energy and intellectual vibrancy, she quietly remains dedicated to furthering research on her condition.
“I am walking around with a lot of grief,” Bilokonsky said during one afternoon conversation over mugs of black coffee. “I fundamentally see her as having lost a lot of her irreplaceable value, and that meant a lot to her. I see that her ongoing health problems are not resolving, and are possibly in some cases getting worse. And the result is that I’m trying to do my best in what I consider to be a pretty horrific situation.”
The past year of research forms a picture of a condition that’s wreaking havoc on people’s functionality – think exhausted and enfeebled, housebound and sometimes bedbound – far away from the overburdened hospitals and jammed intensive care units that absorb so much media attention.
But go online, and you will be witness to a theater of commiseration. One subreddit, r/covidlonghaulers, includes more than 23,000 members, many of whom appear to be living with families and social networks who meet their plight with emaciated smiles and flittering eyes, betraying bewilderment at why they can’t simply move on with their lives (as though chronic illness were a self-destructive act of volition).
Others are sucked into the convolutions of the healthcare system, an unforgiving labyrinth of debt, dead-ends and doubt. As one user writes, “I’ve seen rheumatology and endocrinology with no answers. My PCP just recommends the ER for psych evals, he thinks it’s all mental.” On Facebook, meanwhile, the support groups are too numerous to count, and collectively feature hundreds if not thousands of new posts every day.
In March 2021, Davis co-wrote an opinion piece with Fiona Lowenstein for the New York Times. “Long Covid is not a footnote to the pandemic or a curious human-interest story,” they declared, but rather “could be one of the largest mass disabling events in modern history”.
In December of last year, the PLRC put out a second study on long Covid on the site medRxiv, which makes unpublished academic research available to the public (known as “preprint”, the paper would later go through the full peer-review process and be formally published in the Lancet’s open access clinical journal).
The second paper is larger, deeper and more rigorous in almost every way. It analyzes survey responses from more than 3,700 participants representing 56 different countries. The PLRC paper does not purport to demonstrate that Covid-19 evolves into long Covid in a specific percentage of cases; it instead analyzes the insidious sprawl of sequelae associated with long Covid. Describing more than 200 symptoms affecting 10 organ systems, the paper serves as a floor-to-ceiling window into what it actually means to be living with the amorphous syndrome.
Two months after its publication, in February Frances Collins, NIH director, directly referenced the study in an announcement that Congress had approved $1.15bn in funding for research “into the prolonged health consequences of SARS-CoV-2 infection”.
Despite the spate of new studies and grim boom of support groups, there remains a contingent of Americans highly dubious of the condition. In an opinion piece for the Wall Street Journal published in March of 2021, psychiatrist Jeremy Devine argued that the symptoms of long Covid can be “psychologically generated or caused by a physical illness unrelated to the prior infection”.
The condition, he alleged, “is largely an invention of vocal patient activist groups. Legitimizing it with generous funding risks worsening the symptoms the NIH is hoping to treat.”
Another opinion article, published in the New York Times in August and co-authored by physicians affiliated with Harvard Medical School and Johns Hopkins School of Medicine, respectively, assumed a similarly critical – though slightly more nuanced – stance. “Long Covid has come to mean different things in different contexts and to different people,” they wrote. “Psychosocial strain could be one contributing factor, particularly in light of the sharp increase in psychological distress amid the tragedy of the pandemic.”
While Devine is ascribing something almost conspiratorial to the PLRC and the Body Politic, suggesting that they’re beguiling followers by offering an “attractive alternative” to the mental health issues they’re actually facing, Adam Gaffney and Zachary Berger, who authored the Times article, construe long Covid as more of a conflation of multiple psychological and physical ills. In both cases, though, we see the latest permutations of a longstanding insistence that complex biological syndromes are partially or completely “psychosomatic-symptom disorders”, as Devine put it.
Yochai Re’em, a psychiatry resident at New York-Presbyterian hospital, says that “part of the urge to reject the notion that there is something called long Covid comes from the fact that many of the patients either are untested, or tested negative, and as a result there’s no objective sign that they actually experienced a Covid illness”. But, he added, the consistency in the symptom presentation of long Covid makes a psychosomatic diagnosis unlikely.
“There are situations where people have some type of unresolved psychological conflict that then presents with physical symptoms. But usually that is such a unique individual process, and there aren’t unifying themes when a whole group of people presents that way. In other words, all the patients would present with symptoms that are very different. But in long Covid, there are common themes.”
The PLRC itself has faced scathing skepticism. After the organization put out its second paper, a small but highly vocal group of detractors emerged almost immediately.
After a link to the paper was approvingly retweeted by Eric Topol, a renowned cardiologist and the founder of the Scripps Research Translational Institute, several prominent medical personages voiced more disparaging views. Francois Balloux, a geneticist at University College London, tweeted that the preprint was “Mickey Mouse science at best”, presumably a shot – at least in part – at the fact that most of the co-authors were relatively young and unaffiliated with major research institutions (his tweet was later deleted).
Gaffney, who more recently co-wrote the New York Times opinion piece, declared, “the ‘long Covid’ narrative needs revision, rapidly,” while questioning the fact that the majority of the study participants had either a negative PCR test or had never taken a test at all. Of the 3,762 participants, 2,742, or 70%, never received a positive test, a phenomenon that could be explained by the lack of testing availability and the prevalence of false negatives ranging from 1 to 30% in early 2020. (The paper demonstrated that there was no significant difference in symptoms between those who tested positive and those who tested negative or were not tested at all.)
The first few detractors might have been more focused on the research methodology, but what succeeded them were anonymous attacks from agitators perturbed by the existence of an unabashedly vocal research group constituted entirely of female longhaulers.
“It was just a shitshow for I don’t even remember how long,” Davis said. At one point, Davis received a dyspeptic, borderline deranged email divulging personal information about her – including her middle name – that she’d never put online. “There is nothing more obvious than the fact that you have Munchausen syndrome,” the message read. “Your symptoms are made up and are mentally ill derived! If you don’t stop this behavior in a very reasonable amount of time then I’m going to have you committed to a mental institution.”
Others were drawn to invoking irrepressible old tropes about the chronically ill, including accusing Davis and the PLRC of seeking to profit from a fictitious condition. “Long Covid is a scam just like Lyme, chronic fatigue, adrenal fatigue,” one tweet read. “Grifters are pushing this and millions of dollars will be made.”
During the demoralizing weeks-long conflagration, Davis and her colleagues learned that there are people who were angry, even personally offended that they were sick – a kind of medical gaslighting by way of internet mob mentality.
It’s difficult to say what advantages a culture of illness denialism provides to society at large – perhaps the obfuscation of vexing truths that complicate the borders between what Susan Sontag famously termed the kingdom of the well and the kingdom of the sick.
The PLRC, though, has aspired to serve as a forceful corrective to this enduring impulse. Helen Burstin, the CEO of an organization that represents 45 physician groups comprising more than 800,000 doctors across the US, said that without them, “we would have not learned as much about the symptomatology of long Covid as soon”.
Ziyad Al-Aly, an epidemiologist at the VA studying long Covid, is more forthright. “When the history of medicine is going to write about this pandemic,” he said, “they’re going to be seen as really an essential piece that galvanized awareness that long Covid exists.”
On a Wednesday morning in August, I met Davis at her apartment to listen in on a Zoom call she was having with Zero Covid Thailand. The small organization had seen PLRC’s research and was working on raising awareness about long Covid in its own country, which had scarcely acknowledged the condition.
“Your paper is very famous,” a young man who introduced himself as Lin told her. “We really, really appreciate the amount of work that you and PLRC and Body Politic have put into making, not just long Covid, but the patient perspective on long Covid heard.”
It occurred to me that there was a chance the PLRC’s paper was the only published research on long Covid that they’d been exposed to at all. In Thailand, they told Davis, all the focus was on keeping the infection numbers low and battling mortality. Morbidity was rarely if ever addressed. As barbed and contentious a subject as long Covid could be in the United States, in other parts of the world its level of recognition was absolutely nil.
A young woman whose Zoom screen read “Benz” spoke up. She’d gotten Covid about a month ago, had rested during a two-week self-quarantine, but was finding herself struggling to return to full strength.
“I realized my recovery is not the same as getting the flu and recovering,” she said. A longtime practitioner of Ashtanga yoga, she now felt depleted and dazed after just 30 minutes of training. “It’s like I lost four years of practice,” she observed. “I really think this is kind of like a long Covid-ish situation for me, but I don’t know how to deal with it yet.”
The expression on Davis’s face shifted, just slightly, her brows furrowing and her gaze long and full as she considered the prospect of another person becoming disabled by the condition that had so dramatically truncated the bandwidth of her own life. She told Benz to practice pacing herself as often as she could, not force herself to exercise if her body was responding poorly to it, and join Body Politic as soon as she was able to.
“I feel like I’ve been sick long enough where it’s very hard to hear,” she told me after the call. “I think it needs to get to a point where it’s recognizable by people, and people aren’t suffering in the dark like this.”
No comments:
Post a Comment