Tom Williams/CQ Roll Call via AP Images
Long COVID activists attend a Senate Appropriations subcommittee hearing on the 2025 budget request for the National Institutes of Health, May 23, 2024, on Capitol Hill in Washington.
A week ago, I visited a neurologist to talk about the migraines I’ve experienced with increasing frequency since I first contracted COVID-19 in December 2021. I knew he wouldn’t want to talk about long COVID because most doctors don’t like to deal with problems they can’t solve in 15 minutes. Of the 15 or 20 I’ve seen since the pandemic began, only my psychiatrist has exhibited any degree of intellectual curiosity about it, possibly because I pay him in cash and so the portion of his brain that would ordinarily be preoccupied attending to the constant pinging of whatever value-based preventative care optimization software the practice was utilizing to maximize its Obamacare bonuses is free to actually pay attention to what patients are saying to him.
The thing is, I don’t just have migraines. I have nausea so bad I usually wear clothes five sizes too big. If I don’t consume two or three gallons of Liquid I.V. spiked with a few teaspoons of extra salt each day and bring another half-gallon to bed with me each night, I probably won’t be able to get out of bed the next morning. If I accomplish too much in a day—and “too much” could literally mean screaming a little too hard beneath sun that’s a little too warm at one of the kids’ soccer games—I will wake up the next morning feeling like I drank a handle of bottom-shelf brown liquor on an empty stomach, which generally means I spend the day writhing in bed thinking vaguely about all the hours I wasted at bars in my twenties, never imagining I’d be veritably useless at 45. (Needless to say, I can’t drink now, nor does pretty much anyone with long COVID.)
An ER doctor had gotten me the neurologist appointment a few days earlier, after I’d shown up there for the second time that month. I’d collapsed walking into the Kaiser building; a custodian had wheeled me downstairs. An hour and a half with an IV and I could walk again, though my whole body felt shattered for days. When the nurse took my blood pressure outside the neurologist’s office, it was 73/55. But that had nothing to do with the headaches, the neurologist assured me. And none of it was long COVID.
“I just went to an NIH panel on long COVID last week,” he said. “The consensus is that it’s psychological.”
I shouldn’t have been surprised, but I was pretty agog. Was he trying to give me a mental illness, just so he could be right?
“I’m sorry, doc,” I said. “But that’s just …”
I thought about saying “anti-science,” but I was a fucking college dropout talking to a man with probably ten years of postgraduate education, so I left it at:
“… philistinism!”
THERE’S A STORY YOU HEAR about multiple sclerosis, that doctors all claimed it too was “psychological” until magnetic resonance imaging came along and revealed big white patches all over the brain scans of its sufferers. Heck, coal country doctors dismissed black lung as “psychological” as late as the 1950s, and when a female scientist even claimed to have isolated the microscopic “germ” that caused polio in 1930, she was written off as a fabulist quack. It would take another 92 years before the scientific consensus would make its way back to the germ theory of multiple sclerosis, and when it finally did, with the 2022 publication of a 20-year longitudinal study of thousands of Veterans Administration MS patients, it didn’t exactly break the internet.
The Epstein-Barr virus, which almost certainly causes MS, is a prolific plague with substantiated or likely links to dozens of maladies from exotic cancers to rheumatoid arthritis. But between 90 and 95 percent of the adult population consistently tests positive for its antibodies, which makes it tricky to link definitively to diseases that emerge after childhood. Epstein and Barr isolated the microbe while exploring the cause of a pediatric lymphoma common in Africa, and a few years later it was determined to also cause mononucleosis, a disease most common in kids and adolescents.
In the 1960s, doctors began reporting incidences of a disease that spread like mono, emerged in outbreaks, and produced elevated levels of Epstein-Barr antibodies but tended to afflict older patients and never went away. They called it variously “benign myalgic encephalomyelitis” and “chronic Epstein-Barr virus.” But after some 200 people living near Lake Tahoe came down with what doctors identified as CEBV in 1984, the Centers for Disease Control, the burgeoning health maintenance organization industry, and a skeptical media conspired (perhaps unwittingly) to dismiss the outbreak—and all prior and future ones—as fake news, a “yuppie virus” in the characterization of The New York Times. “The problem is that almost every person in the United States has symptoms that are compatible with symptoms of the syndrome,” a CDC epidemiologist told the Times. After the name change, an HMO cut off a 39-year-old woman in Tucson who’d been relying for years on daily injections of the herpes drug Zovirax to control her incapacitating chronic Epstein-Barr; she sued, lost, and was never heard from again.
A Harvard professor and director of general medicine at Brigham and Women’s Hospital who examined 175 of the Tahoe patients said the outbreak was real, but the director of infectious diseases at the same hospital consumed multiple column inches dismissing it anyway. “It’s a disease mostly of younger adults who are having difficulties in what are ordinarily difficult phases of life,” he told the Times. “These people are very unhappy, and it’s often very difficult to sort out how much of their psychological problems come from their illness and how much is the cause of their illness.”
Maureen Tkacik
An AP story about the apparent Epstein-Barr outbreak that struck Lake Tahoe’s north shore in 1984 and birthed the rebranding of the disease as “chronic fatigue syndrome”
In 1987, the CDC agreed to rename CEBV “chronic fatigue syndrome,” a label barely more dignified than “Human Condition Disease,” in a seemingly explicit effort to banish it from the realm of infectious diseases and into the cesspool of nebulous chronic conditions associated with hypochondriacs and whiners. And although it is estimated to affect millions of Americans, it never attracted substantial large-scale research after that; there are no approved treatments, and an effort to develop an EBV vaccine never picked up steam.
But COVID brought CFS roaring back to relevance. As many as half of COVID patients who complain of chronic symptoms described circumstances that are eerily identical to those suffered by CFS patients: extreme hangover-like episodes featuring intense headaches, dehydration, dizziness, “brain fog,” and gastrointestinal distress triggered or intensified by (often pathetically marginal amounts of) exercise, stress, or concentration (a phenomenon called “post-exertional malaise,” or PEM). Numerous studies have shown elevated levels of EBV antibodies in patients who report CFS-like long COVID symptoms and, even more notably, antibodies indicating recent EBV reinfection in the blood of acute COVID patients who later reported long COVID symptoms.
I didn’t get tested for EBV until 17 months after my original COVID infection, but my sample showed 280 units per milliliter of EBV antibodies, as compared with a “normal” value of 18 or fewer. A side-by-side meta-analysis of 57 studies on both CFS and long COVID patients conducted by Anthony Komaroff—the same Harvard professor who investigated the 1984 Lake Tahoe outbreak—shows dozens of commonalities, from abnormal cytokine production to shortened telomere length to gut microbiome inflammation to a condition called POTS that causes dizziness and salt deficiency. There were also a few noteworthy differences; CFS patients don’t generally report loss of smell, for example. But Komaroff concluded that COVID had likely triggered CFS in some patients, and that CFS had likely always been caused by “multiple agents” interacting with one another.
None of this is 100 percent certain, of course. But the symptomatic similarities between CFS and long COVID were so immediately obvious that no less an authority than Anthony Fauci held a press conference in July 2020 to warn the public of a potential “post-viral syndrome associated with COVID-19” with symptoms that “resemble the symptoms of [CFS].” Within weeks, the two diseases were discussed almost interchangeably in patient support groups and on the indispensable COVID Long Haulers subreddit.
BUT WHEN, IN FEBRUARY 2021, Congress appropriated $1.6 billion to the National Institutes of Health to study long COVID, the institution did not consult a single scientist with CFS or any post-viral chronic illness expertise to design or lead any aspect of the program, according to a blockbuster new report published in The Sick Times, an upstart long COVID newsletter funded by the Ethereum billionaire Vitalik Buterin, one of a handful of oligarchs who have bankrolled private research into the condition.
According to the report, of the 28 scientists appointed to leadership advisory positions within the program, which is called RECOVER COVID, just one had any experience whatsoever researching post-infection illnesses. Now, to be fair, Jared Kushner served on the board of directors of Operation Warp Speed, but its head was an immunologist who spent his entire career developing vaccines.
Of the $1.15 billion the agency has spent thus far, roughly a half-billion was allocated to a sprawling New York University–led surveillance effort helmed by no fewer than 18 scientists, none of whom possesses any expertise in post-infection illness either, though many boast expertise in cardiology, statistics, “social determinants of health,” health informatics—and one specializes in “patient engagement maximization.” (The same went for the 29 Mass General scientists involved in leading a database project that consumed more than $100 million in funds.) The NYU effort involved recruiting hundreds of patients who had tested positive for COVID-19, subjecting them to extensive batteries of tests every few months, and building a database to collect and analyze their findings—a fine idea in theory, I guess, but hardly an appropriate first order of business in the middle of a public-health crisis affecting roughly 17 million Americans that has likely removed at least a million from the workforce already.
Some of the smaller initiatives funded by the RECOVER program were even more clueless. Last year, following two years of preliminary study, the agency announced it would be holding five different forms of clinical trials to test the efficacy of various forms of treatment on various clusters of symptoms associated with long COVID. One of the five will treat patients reporting “brain fog” with a form of cognitive behavioral therapy, a talk therapy designed exclusively for psychological ailments. Another will test the stimulant Provigil on patients reporting disturbed sleep, which will probably help—the drug has shown promise weaning addicts off cocaine, after all—but seems frustratingly beside the point. A third, RECOVER-ENERGIZE, will test exercise and strength training regimens on patients reporting “exercise intolerance”—a dangerous experiment for a patient population that consistently reports being rendered bedridden for days by moderate housework.
But as the documents obtained by The Sick Times demonstrate, the NIH staffers and contractors directing RECOVER appear to have been wholly clueless about PEM, CFS, or indeed the nature of long COVID generally. In one February 2023 back-and-forth, a chirpy representative of the NIH contractors RTI International asks a panel of assembled experts to expand upon their PEM-based objections to the initiative’s exercise and cognitive behavioral therapy trials. And in an email exchange from April 2024, a long COVID patient declines an invitation to enroll in a RECOVER study because the physical requirements are too onerous—plus, she notes, the staff member assigned to interview her had never heard of CFS.
Maureen Tkacik
The author’s elder son Francis getting tested with an EKG as part of an NIH long COVID study in 2022
As it happens, I enrolled my kids in a RECOVER study of pediatric long COVID back in 2022. Neither of them have it, thank God, but the only requirement was that they’d at some point tested positive, and they were promising participants $40 gift cards, which seemed like a fun way to bribe them with toys to learn “how science is made.” Blame the brain fog: It was a nightmare. The research nurses, while lovely, were not particularly dexterous phlebotomists, and the study required them to extract approximately 36 vials of blood from my four- and six-year-old boys. Merely watching his older brother get poked and prodded by one of the researchers caused my four-year-old to run out of the room sobbing; when he stormed back in, tears streaming down his crimson face, he pointed at one of the nurses and screamed: YOU SAY SORRY TO MY BROTHER! So that part took about two hours, during which the support staff bribed them with vast quantities of Star Wars and Pokémon merch. Then there were EKGs, X-rays, physical stamina tests, and oceans of paperwork.
It took around seven hours all told, and definitely triggered a mild flare-up of my long COVID symptoms, which I mistook at the time for possible pre-diabetes. After months of hand-wringing, I dropped out of the study when it came time to suck another 36 vials from the little guys’ veins, and felt desperately guilty about it. In hindsight, I feel like I’m the one who deserves the apology.
Because in a health care system tyrannized by monopolies with a fiduciary obligation to make sickness and pain profitable, agencies like NIH are the only institutions legally sanctioned to steward public health. That’s why liberals invariably give its officials a pass for getting rich off pharma royalties, spreading misinformation about COVID’s origins, conspiring to circumvent public records laws to cover up their role funding the lab that may have inflicted the virus upon humanity in the first place, and so on. But it’s probably time to ask ourselves what explains the alarming disparity between the shocking efficacy of Operation Warp Speed and the efforts a witness at a Senate long COVID hearing earlier this year described as “snail speed.” A prominent post-acute chronic infectious disease researcher I consulted on the documents suggested a “culture of mediocrity” was to blame.
“RECOVER is really a disaster,” the researcher told the Prospect. “They’re wasting all this money on observational research and voodoo stuff like CBT [cognitive behavioral therapy] and sleep therapy … when if you’d given that funding instead to [specialists] we might have some understanding of why viruses are associated with these particular chronic problems by this point.”
The researcher did not want to be identified, but said their interactions with NIH had left them profoundly disillusioned about the future of long COVID research. “The hardest part for me to digest is that I really think they don’t want to listen … The tragedy is that people’s lives are dependent on them making meaningful progress, but they’re not motivated by urgency or excellence or scientific progress. [So] it’s just going to be the same cycle of failure after failure.”
