The Painful Truth About Long Covid

Nothing about long Covid adds up.

Consider prevalence rates: How could one study find it affected 3.3 percent of the population of the UK but others an alarming 51 percent of South Americans and 86 percent of Egyptians? Or treatment methods: The BMJ’s systematic review of ways to treat long Covid lists two as supported by moderate evidence, cognitive behavioral therapy and physical exercise. But if you attended the third annual Long Covid International Conference in Boston—as I did, late last year—you’d think the BMJ was encouraging medical malpractice. During two days of presentations, the world’s leading scientific authorities brought up exercise only to warn against it. Cognitive behavioral therapy received just one mention: “not recommended.”

Then there’s the scientific progress, or lack thereof. Six years since the height of the pandemic, the scientific community remains baffled by long Covid. Researchers still don’t know why some people’s symptoms persist or worsen after the acute phase of SARS-CoV-2 infection has passed. Almost $2 billion and half a decade of international effort have yielded little more than hypotheses about micro blood clots and spike proteins and mitochondrial dysfunction. There isn’t a single approved pharmaceutical treatment, not even a test to verify the presence of the illness.

All of this is very strange. Stranger still are patients’ stories of astonishing recoveries from severe long Covid, achieved entirely outside mainstream medicine. The stories are connected to a growing community of doctors, therapists, and self-styled coaches who insist the riddle of long Covid has been solved. Like so many health gurus, they offer a solution that depends, in part, on your faith in the process. The solution also works for a remarkable variety of ailments—classic red flags for “holistic” pseudoscience and medical charlatanry. If the stories are to be believed, they represent a neglected approach that demands urgent attention. If not, a colossal medical scandal is operating openly, exploiting sick people desperate for answers and relief.

It’s the job of the scientific community to solve mysteries like this one. Doing that job effectively, however, has two basic conditions: Researchers must know what they are studying, and they must be free to study it impartially. In the case of long Covid, neither of these conditions has been met, and patients are suffering the consequences.

One of those patients is a 37-year-old man I’ll call Andrew Larson, who came down with a bad case of Covid-19 in late 2023. After a week in bed, he recovered enough to begin working again. But a month later he noticed something was seriously wrong. Mild exertion like a short walk left his brain foggy and his body exhausted. Larson pushed through until June 2024, when he did some construction work around the house. The exertion was too much. His body began to shut down, and two weeks later Larson was bedbound.

Because so little is known about long Covid, sufferers are often dismissed by providers or passed from one skeptical specialist to the next. Symptoms vary dramatically in type and severity, which means one person might experience mild sleep issues and fatigue while another could become completely incapacitated. In those severe cases, it’s not uncommon for patients to end up in the psych ward. A privileged few land at dedicated clinics, but empathetic doctors can do little more than treat individual symptoms and hope for improvement.

Larson made his way to such a clinic, but he didn’t improve. By late 2024 and into 2025, the once-fit father had been lying motionless and mute in a darkened bedroom for months, pallid and emaciated, unclipped nails like claws, sucking pureed food from a syringe, dependent on a bedpan. Any exertion, even chewing or talking, meant waves of excruciating pain and days of bone-deep exhaustion.

What energy Larson had went into experimenting with treatments discussed in online support groups and Reddit threads: anticoagulants, antivirals, hydrophilic bile acid, a fortune’s worth of supplements, low-dose naltrexone. The last produced marginal improvements—“If I hadn’t started LDN, I might have taken my life,” he told me—but he still couldn’t move or mumble more than a few words.

Medical tests mocked him: normal, normal, normal. To qualify for disability, he traveled hours to a doctor willing to document his deteriorated state. Local physicians had dismissed him, like the neurologist who suggested he was “malingering.” Almost unbelievably, they worked at the same hospital where he, Andrew Larson, PhD, had been doing research just a couple of years earlier. “I’m in an online group with another 20 medical professionals that have long Covid, and everybody has the same experience,” Larson said. “When you cross the line of being a patient, you’re a patient. They couldn’t care less about your credentials.” (His insurance company has been endlessly skeptical, at one point visiting Larson’s home to confirm his ill health, and he requested anonymity for fear of losing coverage. Some identifying details have been changed.)

His wife, also a medical professional, became frantic. She thought Larson must be mentally ill—despite clear physical symptoms like inflammatory arthritis—and urged him to try antidepressants. He refused. Nevertheless, she continued to seek out alternative approaches and eventually secured a Zoom appointment with an unusual doctor she found online.

Becca Kennedy was the former lead of a multistate long Covid specialty group for Kaiser Permanente. She had met hundreds of patients with similar symptoms and stories. “People are really suffering,” Kennedy said. “Their symptoms are real. But if we want to help them, we need to understand the source of their suffering.”

Kennedy can barely contain her fury when she discusses mainstream theories of long Covid. She talks about patients who blew their savings on unevidenced blood-washing treatments because they believed the problem was micro blood clots. (Once a popular theory, it has now been replaced by other hypotheses.) She accuses scientists and clinicians who champion biomedical explanations of relying on shoddy, ambiguous research. “It’s poorly done studies that are really small,” she said. “And patients will be like, ‘Oh, well, this is micro blood clots and this is viral particles.’”

Kennedy has a different—and far more controversial—theory. She believes long Covid belongs to a family of chronic conditions that occur when the brain gets stuck in a feedback loop of fight or flight. Pain and fatigue signals, which should play a protective role—pain warns of structural damage, fatigue warns of overexertion—instead go haywire, like a broken smoke alarm. The result is a cascade of symptoms she attributes to nervous system dysfunction. The solution, she argues, is retraining the brain to break the loop. “It’s about how we are designed, our survival brains,” Kennedy said. “And now we have the neuroscience to understand these symptoms. I’m not saying it’s all in their head. I’m not saying it’s their fault.”

PHOTOGRAPH: Yi Hsuan Lai

Kennedy is a member of the Association for the Treatment of Neuroplastic Symptoms, which is dedicated to spreading the theory that many chronic conditions can be resolved with specialized therapeutic techniques that target the brain. They lean heavily on the power of “neuroplasticity,” a very general term for the brain’s ability to change structurally and functionally. Howard Schubiner, one of the founders of ATNS and Kennedy’s mentor, has been using brain retraining for years, treating everything from back pain to migraines to, now, long Covid. “Doctors don’t understand psychology,” Schubiner said. “They don’t understand neuroscience. Medicine is stuck in a biomedical model.”

Kennedy and Schubiner use a combination of trauma therapy, emotional awareness and expression therapy, body awareness techniques, and cognitive exercises. They’ll ask patients to imagine themselves undertaking an arduous activity, like going up stairs, and attend to how their body reacts. When the imagined activity triggers symptoms, patients come to see the cause is in their nervous system—which, of course, includes the brain—not structural damage in the body. At Kaiser, Kennedy says she had too little time with patients to form the kind of relationship necessary for this approach. So she quit and started a private practice, which is how Larson’s wife discovered her and scheduled their first Zoom appointment.

Initially, Larson said he “knew too much biology” to believe any of it would work. When Kennedy encouraged him to try simple breathing techniques, his symptoms flared up. He swore at her and accused her of violating his boundaries. But after a few months, he could use the bathroom with a walker, eat real food, and talk for as long as he wanted. As of this writing he can shower on his own and manage a thousand steps in a day. Recovery has been slow, with ups and downs, but he and Kennedy are confident the improvements will continue. “Thank God for her,” Larson said. It’s a refrain in our conversations. Thank God.

PHOTOGRAPH: Yi Hsuan Lai; Getty Images

PHOTOGRAPH: Yi Hsuan Lai; Getty Images

I’ve spoken with a dozen formerly bedbound sufferers who credit brain retraining with partial or full recoveries from severe long Covid and other chronic conditions. Hundreds more have shared testimonials about a range of similar approaches that fall under the gauzy umbrella of “mind-body” therapies. At the ATNS conference last year, I met several people whose experiences were so transformative they switched careers to become health coaches.

Outside of the community, such recovery stories are frequently met with skepticism and frustration. “To say ‘mind-body’ makes it sound like these neuroses are keeping them from getting better,” said Lisa Sanders, the director of Yale’s long Covid care center. “That’s just not how I see things at all.” In some long Covid groups, moderators remove positive posts about brain retraining and ban the users who write them, as you might in a cancer forum if someone endorsed the healing power of prayer and positive thinking. An influential advocacy news site published, and then removed, a book excerpt by a Georgetown medical anthropologist that was perceived as hinting at sympathy for theories like Kennedy’s.

I asked Claire Every, a patient who runs Long Covid Advocacy in the UK, what she thought of these approaches. “It’s quite soul-destroying as someone with severe long Covid to be told that it’s either your trauma, or your emotions, or your mental framing,” she said. “I think it’s an awful thing to do to somebody.” She and other advocates also worry that emphasis on psychological therapies will distract from biomedical research that could yield a breakthrough disease-targeting intervention.

Surveys show that “proving the realness” of long Covid is a top priority for sufferers—understandably, when newspapers run headlines claiming it’s fake. As long as clinicians, insurance companies, and the general public are dismissing people like Larson, even entertaining the plausibility of mind-body interventions can seem irresponsible and dangerous.

And that danger is especially acute right now, because it threatens a fragile paradigm shift around conditions like long Covid that’s been decades in the making.

Since at least the 19th century, when physicians described cases of “influenza exhaustion,” medical professionals have been documenting chronic illnesses that follow bacterial, viral, fungal, and parasitic infections. Now known as post-acute infection syndromes, severe cases are characterized by cognitive impairment, autonomic nervous system dysfunction, diffuse pain, and, crucially, debilitating crashes after overexertion, which go by the term “post-exertional malaise.” Categorizing these severe cases is a terminological minefield. But the most common designation, and the one used by the Centers for Disease Control and Prevention, is ME/CFS, which stands for “myalgic encephalitis / chronic fatigue syndrome.”

As with long Covid, ME/CFS has no clear biological explanation or diagnostic test, which means the medical community has struggled to offer care and empathy. Those with the condition knew what to expect when long Covid hit, because they’d seen it before: wisecracks dismissing ME/CFS as “yuppie flu” in the 1980s; scientific journals attributing their symptoms to epidemic hysteria. “People with these conditions get one of two labels in the popular imagination,” said Todd Davenport, an exercise physiologist at University of the Pacific who specializes in ME/CFS. “They get ‘lazy’ and they get ‘crazy.’”

In the old paradigm, the dominant authorities on ME/CFS were psychiatrists, like Michael Sharpe, an emeritus professor at Oxford, and Simon Wessely, former president of the prestigious Royal Society of Medicine. Their theory was straightforward: Sick people get deconditioned from lack of physical activity. When they try to go back to their normal lives, some experience unusual fatigue, because their bodies aren’t fully recovered. A subset of people misperceive this fatigue as ongoing infection or tissue damage, leading to a vicious cycle of distress, aversion to activity, and increased deconditioning. In essence, patients cursed themselves by believing their symptoms had a strictly biological cause. The stronger the belief, the worse the curse. “Poor prognosis,” Wessely explained, “is associated with holding very firm convictions of an exclusively physical origin to symptoms.”

If you accept this theory, the right treatments follow naturally: cognitive behavioral therapy to correct the mistaken beliefs, and exercise for the physical deconditioning. Sharpe and other colleagues eventually secured £5 million to evaluate those treatments in a study known as the PACE trial, which Wessely advised on. Published in The Lancet in 2011, it was easily the largest study ever of ME/CFS. The authors took the positive results as confirmation of their theories. “For those who appreciate these things, the trial is a thing of beauty,” Wessely wrote. “We now have two treatments that we can recommend with confidence to our patients.”

Among patients and advocacy organizations, the reaction was uniformly negative. A scathing letter to The Lancet from the ME Association’s medical adviser put it bluntly: “The patient community has expressed both anger and despair.” The association surveyed patients and found that 74 percent said exercise therapy made them sicker. ME Action, another advocacy organization, collected 10,000 signatures for a petition demanding the study be retracted.

One of the study’s most influential critics was David Tuller, a journalist and lecturer at the UC Berkeley Center for Global Public Health. A veteran of the HIV/AIDS crisis, Tuller had shifted his attention to ME/CFS, where he saw something akin to HIV denialism. “It was designed to ratify what they were already claiming,” Tuller said of the PACE trial. “It meets every single definition you can think of for research misconduct to a degree.” Tuller also collected harsh comments from physicians and scientists: “shocked that The Lancet published it,” “blatant methodological lapses,” “the height of clinical trial amateurism.” (Tuller noted to me that his position at Berkeley is supported by crowdfunded donations from patients and patient advocates.)

In the ME/CFS community, Wessely and Sharpe became talismanic symbols of medical science gone wrong. Their every statement was subject to intense scrutiny. The Guardian reported on a “campaign of intimidation, attacks, and death threats.” Wessely was accused of, among other things, throwing a sick boy into a pool to see if he would sink or swim. (Wessely denies this allegation, and many others, on his personal webpage.)

Over time, the influence of the PACE trial began to fade. Although The Lancet never retracted it, major medical organizations dropped recommendations for cognitive behavioral therapy and exercise rehabilitation. The CDC’s overview of ME/CFS now opens with a decisive rejection of psychological factors: “ME/CFS is a biological illness.” In online support groups and patient communities, anything remotely associated with the trial became instantly suspect. Exercise was a threat, not a therapy. To suggest the mind had any role in causing or curing ME/CFS was to align yourself with monsters and malpractice.

Then the pandemic hit.

This time patient advocates were ready, and the zeitgeist was on their side. Prominent long Covid skeptics like Vinay Prasad, a former Trump appointee to the FDA, were already viewed with suspicion by the scientific mainstream for minimizing the risk of Covid-19 and highlighting the risk of the vaccine. Honoring “lived experience” had become more of a cultural imperative, and long Covid patients effectively reframed their clinical encounters with dismissive doctors as “gaslighting” and “abuse.”

Musa al-Gharbi, a sociologist at Stony Brook University, thinks that the gendered nature of long Covid—being female is an established risk factor—might have affected the success of advocacy organizations. “This was a political environment where there’s a lot of stress on believing women, on trusting women, on taking women seriously,” he told me. “It was a fertile moment and a fertile set of conditions for the patient advocacy campaign to actually break through.”

Break through it did: The term “long Covid” was coined by a patient, not medical researchers. Virtually every ME/CFS organization pivoted to long Covid in their advocacy. Online ME/CFS forums filled with discussions of long Covid. Everyone emphasized similar themes: Attributing long Covid to psychology, rather than biology, is another predictable chapter in the sordid history of medical sexism and gaslighting. Because the condition is biological, psychological therapies can’t offer a cure. Suggesting they can is just another way to blame the victim and say long Covid is fake.

By 2025, most experts had adopted the same position. “I think everybody now agrees that long Covid is a biologic disease,” said Igho Ofotokun, of Emory University School of Medicine, in his concluding comments at the Long Covid International Conference. “It’s not in your mind. It’s real.” Ofotokun also offered an explanation for the lack of scientific progress. “The big elephant in the room is just that we don’t have a gold-standard definition for long Covid. So it really makes it difficult to do all the things we want to do. Makes designing of clinical trials extremely difficult, following outcomes in clinical trials extremely challenging.”

Part of the definitional problem for long Covid is the absence of definitive biomarkers: genes, antibodies, any unique physiological signature of the illness. To discover biomarkers, researchers must first identify patients presumed to have a specific illness, then see what they have in common beyond their symptoms. Identifying a biomarker allows for the development of disease-targeting interventions—gene therapy, antivirals—and enables the sorting of people who have a particular condition from those whose symptoms mimic the condition but are caused by something else.

Scientific experts are in charge of the search for long Covid biomarkers. But their search depends on the essential question of how to classify someone as having long Covid in the first place, the answer to which has been strongly influenced by patient advocates. Deciding who to include in a study of long Covid requires a provisional set of exclusionary criteria. If the criteria are too strict, they will exclude people who have the condition; if they are too relaxed, they will include people who don’t have the condition. Each of these poses a risk to the accuracy of the science.

But for patient advocates, strict criteria have an additional risk. If they are implemented, some sufferers who believe they have long Covid won’t “officially” have it. This risk was front and center when, not long after the outbreak, the National Academies of Sciences, Engineering, and Medicine (NASEM) took on the challenge of producing a “uniform, core definition” of long Covid. At the time, basic questions remained unanswered: Does long Covid require a prior positive SARS-CoV-2 test? What symptoms are necessary? How long must they go on?

In 2024, with a “focus on the patient perspective and interdisciplinary dialogue,” the committee produced an “intentionally inclusive” definition, to “ensure that patients who experience long Covid will be included in the definition.” Long Covid, they decided, is “an infection-associated chronic condition that occurs after SARS-CoV-2 infection and is present for at least three months as a continuous, relapsing and remitting, or progressive disease state that affects one or more organ systems.” Among the possible symptoms: shortness of breath, cough, persistent fatigue, post-exertional malaise, difficulty concentrating, memory changes, recurring headache, lightheadedness, fast heart rate, sleep disturbance, problems with taste or smell, bloating, constipation, and diarrhea.

According to the NASEM definition, a single symptom from the list is enough. It can be mild or severe. Previous infection “may have been recognized or unrecognized”—that is, a prior test for Covid is unnecessary. Put differently: If you start having trouble sleeping, on and off, for three months, and you attribute that to an unverified case of SARS-CoV-2, you have long Covid.

As a powerful legitimization of people’s suffering and a deterrent against gaslighting, the NASEM definition may be a success. But it fails as a functional element of scientific inquiry. “It is the broadest definition of any clinical entity in medical history,” said Adam Gaffney, a pulmonary and critical care physician and an assistant professor at Harvard Medical School. “I don’t think it is very useful at all either for research or clinical practice.” When researchers select a patient population using an overly broad definition, noise in the data will spike, and studies are likely to generate useless or ridiculous results. A recent JAMA analysis of studies using broad definitions of long Covid, for instance, showed that people with a documented prior infection suffered from long Covid at slightly lower rates than people without one.

An overly inclusive definition of long Covid also invites accusations of double standards, since scientists and public health officials use tighter definitions for other conditions, like post-vaccine injury. Anders Hviid is a Danish epidemiologist who has worked on both vaccine safety and long Covid. I asked him what would happen if epidemiologists used an intentionally inclusive definition of post-vaccine injury. “Everyone would have post-vaccine syndrome of some kind, right?” he said. “It’s basically what anti-vaxxers are doing. They are attributing everything that happens after you’ve been vaccinated to the vaccine.”

People with post-acute infection conditions are routinely traumatized by medical professionals and the general public. They are disbelieved about the reality and severity of their symptoms. They are accused of faking. Advocates have fought hard to prevent that trauma, and with long Covid they are finally seeing results, thanks to their emphasis on believing patients. But believing patients about the reality of their symptoms is not the same as believing them about the cause and resolution of those symptoms, and conflating the two can lead to serious problems.

PHOTOGRAPH: Yi Hsuan Lai

The relationship between exercise and post-exertional malaise is a case study in how scientific results can clash with believing patients. Advocates generally agree that people with this symptom should avoid exercise at all costs. In the National Institutes of Health’s flagship long Covid study, patients who reported post-exertional malaise were assigned to an arm of the trial that didn’t involve any exercise or rehabilitation, because they were considered far too risky. “We need to use the precautionary principle of ‘first do no harm’ and not offer physical rehabilitation to patients with long Covid and ME, or only with the greatest caution,” said Elke Hausmann, a British general practitioner and long Covid sufferer. Sanders, of Yale’s Long Covid clinic, told me exercise is so taboo she refers to it as the “e-word.”

If exercise did indeed trigger post-exertional malaise in most patients, this level of caution would be warranted. But multiple studies have shown that self-reports of crashes don’t line up with what researchers find in controlled settings. Unlike mind-body therapies, exercise is widely embraced by mainstream medicine as an effective intervention for conditions that look like long Covid, so the studies have come from well-established mainstream researchers. One of the most rigorous trials so far of exercise interventions for long Covid, including high-intensity interval training, found “the exercise response was largely comparable” between long Covid patients and healthy controls, “with no profound symptom exacerbation.”

Andrea Tryfonos, the lead on this trial, emphasized that avoiding exercise is, in itself, an extremely risky intervention. “We know that no exercise leads to increased risk of cardiovascular disease, increased risk of metabolic disease, certain types of cancer, diabetes, depression, Alzheimer’s,” she said. “Long Covid itself cannot be a barrier to exercise.” Other rehabilitation specialists echoed her concerns in an invited commentary to JAMA and expressed hope that the trial’s results would assist in “debunking the controversies surrounding graded exercise therapy.”

A single trial, even a rigorous one, is not proof of anything. One way to address uncertainty about the effects of exercise would be more trials, tailored to subsets of long Covid patients. But entrenched resistance makes doing those trials exceedingly difficult. It’s challenging to find a large number of subjects, because patients have read about the perils of exercise online and don’t want to enroll. And at universities, institutional review boards have been primed to think exercise is inexcusably dangerous. “We had a tremendous problem with the IRB,” said William Stringer, a coauthor of a long Covid exercise trial at UCLA. Members of the review board were concerned that asking patients to exercise could be unethical, even under careful expert supervision. “They didn’t want to approve it.”

If overcoming opposition feels too burdensome or controversial, researchers may simply abandon a trial. Siddhartha Angadi is an exercise physiologist at the University of Virginia who specializes in rehabilitation. He designed a long Covid exercise trial with a cardiologist and a pulmonologist, both of whom had experience treating patients with severe heart failure. (In rehabilitation medicine, “exercise” means physical activity in service of rehabilitation, so standing up from a chair could qualify.) The IRB approved it. But then a UVA law professor and long Covid patient emailed him and the IRB with “grave concerns” about the trial. There was “no way this would be approved if the dangers involved” were understood, they wrote. Angadi and his coauthors got spooked. “We were like, this is just too much,” he said. “So we bailed on it.”

PHOTOGRAPH: Yi Hsuan Lai; Getty Images

PHOTOGRAPH: Yi Hsuan Lai; Getty Images

The study of cognitive symptoms and interventions suffers from the same dynamic. Long Covid can cause life-changing, verifiable cognitive impairments. But self-reports of those impairments often don’t match what objective testing finds, as was the case in the neurological arm of the NIH long Covid trial. “We found that only 16 percent of our sample had actual impairments at baseline,” said Jacqueline Becker, a neuropsychologist at the Icahn School of Medicine who helped lead the trial. Becker pushed for using test results instead of self-reported impairment as the trial’s primary endpoint, but her team decided the tests didn’t adequately prioritize patients’ experience.

The trial ultimately failed to find an effect for the psychological intervention, but Becker thinks the result could be skewed because they used a subjective endpoint. “To me, that’s unacceptable,” she said. “If patients aren’t impaired at baseline and then you do an intervention, you’re not going to see anything.”

At the long Covid conference, I asked one clinician-researcher why psychological risk factors—for which there is substantial evidence—had gone entirely undiscussed. “The patients are listening,” he whispered. “Talking about psychology can destroy your career.” He was one of multiple experts I interviewed who asked to remain anonymous to avoid retaliation. Paul Garner, an infectious disease epidemiologist who attributes his own recovery from long Covid to brain retraining, received multiple death threats after speaking publicly about his experiences.

Even people who are uninterested in psychological factors feel the effects. Lindsay McAlpine is a Yale neuroimmunologist who treats long Covid patients and conducts research on biomarkers that help provide evidence of cognitive dysfunction. “I learned very early, very quickly, keep my head down, do good work,” she told me. “I don’t want the death threats.”

I spoke with one of McAlpine’s patients, a 65-year-old accountant I’ll call Sarah Halpern. Once an avid golfer, Halpern contracted Covid-19 in May 2020. A few months later, she could barely walk, and cognitive issues were making work a nightmare. Doctor after doctor said they couldn’t help, until Halpern found a cardiologist at Yale “who actually seemed to understand Covid and didn’t dismiss me as being a hypochondriac or having anxiety or making stuff up,” she said. Halpern was subsequently referred to McAlpine, and together the team diagnosed and successfully treated her long Covid.

Surprisingly, Halpern told me her cardiologist characterized her nervous system as being “fight or flight on overdrive,” language that’s commonly used in the mind-body community. And although Halpern was prescribed beta-blockers and aspirin, she credits most of her recovery to three non-pharmaceutical interventions. The first was months of rest and a break from work. The other two—gradually increased daily walks and cognitive exercises with a speech pathologist—are similar to graded exercise and CBT, the very interventions dismissed at the Long Covid International Conference. “Frankly, I think it saved my life,” Halpern said of her sessions with the speech pathologist.

Believing patients is arguably the most important principle of long Covid advocacy. It explains everything from NASEM’s broad definition to the taboo on researching exercise. And yet, despite advocates’ staunch support of this principle, there’s one group to whom it emphatically does not apply: long Covid sufferers who claim mind-body therapies have helped them.

The most high-profile example of this phenomenon is Giorgia Lupi, a New York–based information designer and former long Covid sufferer. In December 2023, confined to her room and wracked with pain, she produced a multimedia op-ed about her experience for The New York Times, a tsunami of vivid charts to help convey the reality and enormity of the condition to doubtful readers. “In that moment, I felt there’s no awareness of the condition,” Lupi said. “I want people to see what it means to live with this on a daily basis.” Emails poured in from grateful sufferers. She partnered with a prominent chronic illness research group, offering pro bono design services to support their work.

But then Lupi got better.

In 2024, she decided to give mind-body interventions yet another try. A popular brain retraining approach, the Gupta Program, hadn’t worked for her, and neither had Internal Family Systems, a trauma therapy approach to chronic pain. But Lupi’s third attempt, which incorporated another variation on brain retraining called the Dynamic Neural Retraining System, proved successful. The pain receded. Her myriad food intolerances resolved. Soon she was well enough to give a TED Talk about her ongoing recovery, albeit still dizzy and weak. While planning the talk, Lupi overrode her TED curator and insisted on including an important sentence, so no one would misunderstand her. Nearly two years later she recited it to me from memory. “The last thing that I want is for people to think that these conditions are all in our head or that positive thinking alone can cure them. This couldn’t be farther from the truth.”