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What 'Long Covid' Means

It’s a real disease, but that doesn’t mean its sufferers are right about everything.

ME and Covid-19 WH Protest
(Photo by Nathan Posner/Anadolu Agency via Getty Images)

All the patients in this article are composites and do not represent individuals.

Before Long Covid, before TikTok Tourette’s, there was Havana Syndrome. Diplomats in Cuba heard strange noises, felt strange vibrations, and developed nonspecific symptoms. Nonspecific is a term of art: it means symptoms that could arise from any number of causes. Symptom is also a term of art: it’s not the same as a sign. A symptom is something you feel, something internal that you tell people about. A sign is what somebody else can see when they examine you.

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These nonspecific symptoms were taken very seriously. There was immediate concern that the Cubans had deployed some sort of sonic ray gun against State Department employees, apparently targeted for convenience. Or maybe they picked precise targets for reasons the public can’t know. Certainly some people who were affected believed they were individually targeted. The CIA became involved, and the FBI, and the CDC. The White House issued a statement. Official investigations found something, or maybe nothing. Journalists wrote articles, some more sympathetic than others. Some extremely sympathetic. 

The exotic disease beat has moved on now. There are more pressing diseases.

She brought three typewritten pages of symptoms to our appointment, to compensate for her memory problems. Her notes included a timeline, and she was quite clear that her symptoms had started after Covid. Her Covid infection, fortunately, had not required hospitalization. Surprisingly, she never had a positive Covid test. She diagnosed herself based on symptoms. But the period of infection she’d gotten over relatively easily. It was what came after that had been devastating. 

She couldn’t remember simple things, shopping lists, chores. She was chronically fatigued: she had insomnia even though she was exhausted, but when she did sleep, she woke up unrefreshed. She had migraines every day. She was dizzy, with both vertigo and the sort of lightheadedness you feel before passing out. Light hurt her eyes all the time. Her ears were ringing. Her joints hurt, some days on one side, some days the other. She had nerve pain, sometimes in an arm or a leg, or her whole body. It could migrate from one limb to another over the course of minutes. I don’t know what it feels like, it feels like nerve pain? What else could it be? Symptoms vanished and returned without a pattern.

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What was frustrating, what was depressing—I am depressed, you know, but that’s because of what is happening. Anybody would be depressed. I wasn’t depressed until this happened—was that nobody had answers. It had been reassuring to put the name of Long Covid on it, that had been a step forward, but now what? Nobody could make it better. Blood tests, x-rays, MRIs, even an electrical test of her nerves, had all been negative. We could still send her for a formal cognitive evaluation, normed and interpreted by a specially trained neuropsychologist. We could test her autonomic nervous system, her cardiovascular system’s response to position changes, the sweat glands controlled by tiny nerves in her skin. She didn’t want to have dementia. If there was anything that could be done for the dementia, or for the nerve pain, or for the dizziness, she would try it. She didn’t want to leave any stone unturned. She didn’t want to be sick. Her support group online had mentioned hyperbaric oxygen therapy, had mentioned sleep aids, had mentioned stimulants to stay awake, and medicines that could prevent low blood pressure. She was leery of anything that might change her mood—she didn’t want to become somebody who wasn’t her.

Our electronic medical records go back many years, longer than the history she’d brought. We talked through it, rehearsing the course of her illness. She did vaguely remember seeing neurologists a decade ago for her chronic migraines. Yes, now that I mentioned it, she did remember seeing rheumatologists five years ago for her joint pain. Tests then, like now, had been negative. She had been dizzy for a long time. It had been several years since she’d gone to the Emergency Department for dizziness.

As I examined her, as she was distracted, some of her difficulty finding words improved. She could remember new items after a minute, after five minutes. She could explain abstract concepts well—with special passion as they related to her disease, and to her fellow sufferers online. I didn’t suspect dementia, I assured her, but we could send her for neurocognitive testing to take a closer look at her thinking. We would look for damage to her nervous system. We would treat anything we could find that was treatable. Was there any symptom that she most wanted to focus on? We should go step by step, so we know what’s working. Sleep was the worst problem and we would focus first on that. 

Most Long Covid patients get better with time, I told her. We will see you back here, after your visits with the other specialists. I hope you are improved when I see you. We can focus on migraines next.

I actually recommend you stay away from the online groups, I said. Most people get better, so the online stuff kind of filters for the very worst cases. And they can be kind of doom and gloom. It can make you feel worse. 

Oh, she said, some of them are so chicken little. I try not to listen to them. I want to get better. 

Post-viral syndromes are nothing new, and nothing particularly remarkable. Headaches, malaise, difficulty tolerating exertion, sleep disturbances, brain fog—all of these are well documented in patients recovering from influenza, for example. There is no medical mystery here, at least not in the commonly understood sense. There’s not typically damage to organs or tissues that shows up on any sort of test or scan. There’s always been room for deeper questions of biological mechanisms and epidemiology, but these are questions that only interested niche researchers previously. You are recovering from the flu; you feel unwell for a period afterward. It gets better with time. For most people, this is enough of a narrative.  

The tissue damage Covid can do, while incompletely understood, is quite concrete. Covid can affect the lungs, the heart, the kidneys. We know it can precipitate diabetes in some patients. We know it can affect the vasculature and dispose people to clot pathologically. It is wholly unsurprising that patients might have long-term problems with various organ systems after Covid. 

Unfortunately, we are talking about both situations when we talk about Long Covid. The clear tissue damage in some patients, the much less clear syndrome of symptoms that don’t show up on tests, that mostly get better, the subset of patients with those symptoms that don’t get better, or that get better and relapse, some of whom may have one or two positive test findings, some of which test findings may have been present before Covid. The terrain gets muddy very quickly. It would be difficult to imagine a syndrome more overdetermined, as the Freudians would say, than Long Covid. 

Long Covid as a diagnosis was discovered by patients, not by doctors or researchers. (The Long Covid community is proud of this—it is a victory of advocacy and of the patients themselves.) But doctors use the term now, and the sequelae of Covid are conflated not just in the popular imagination but in the minds of doctors. Here you have the people with myocarditis, and here you have the people with brain fog. Are they both Long Covid? They both come to Long Covid specialty clinics. The term is mostly claimed, mostly used, for the latter. But it is sometimes convenient to include the former, because the damage to their organs is verifiable. You can launder disease the way you launder money: mixing the nonspecific symptoms with concrete signs so that the entire pool has the same provenance. But this isn’t (mostly) done in bad faith, and it may to some extent be inevitable: the patients with verifiable tissue damage and the patients with nonspecific symptoms may sometimes even be the same patients.

He is polite and educated and works in logistics. He got back from the Peace Corps a decade ago. All his friends contracted a mysterious parasite while overseas. Nobody has been able to tell him what the parasite is. He points me to marks on his skin that the parasite made. These are excoriation marks; they come from scratching. I can see from the notes of previous doctors that he has been undergoing testing for years. Biopsies of his skin haven’t found anything. No test has found anything. I am a neurologist. He has exhausted the tests his dermatologists and gastroenterologists and infectious disease doctors have to offer. He is seeing me because now the parasites are damaging his nerves. 

Long Covid as a diagnosis was discovered by patients, not by doctors or researchers.

I ask more about his friends who contracted the parasite. They live all over the United States. He does not want to talk about them, except to assure me they have the same symptoms. It is only after I ask very directly that he confirms that, yes, these are friends he met online. They were not overseas with him, at least not physically, not in the same place. He met them later. They support each other in their journeys. They help each other understand their symptoms. 

This last part stands out because it is difficult for him to explain his symptoms as symptoms. He has “nerve damage” but he doesn’t describe it as a type of pain or numbness or anything you might feel; he continually circles back to what caused it, the parasite. But what do you feel? I feel the parasite damaging my nerves. He is getting worse, he is in crisis, about to lose everything, but this has been true for years, and after all these years all his tests continue to be normal: no tissue is damaged except in tracks that match his fingernails.

We call diseases infectious if they spread from host to host. We call the thing that spreads them a vector. We call the thing vectors spread a pathogen. We mostly assume pathogens are microorganisms—bacteria, parasites, viruses. We seem to want them to be microorganisms. There seems to be a very human impulse to assign suffering to little critters attacking us from the inside. 

She is very worried that the virus is still active inside her. She asks about this several times. She feels inflammation all over. I ask her to describe the feeling but this is hard, and the answer mostly returns to body parts, not to the symptom itself. I feel inflammation here, and there, and there

A protester holds up a placard demanding research and an end to Long Covid-19 during the demonstration.
(Photo by Martin Pope/SOPA Images/LightRocket via Getty Images) (Photo by Martin Pope/SOPA Images/LightRocket via Getty Images)

Her immune system has probably dealt with the virus, I say. It has been months since her infection, and her symptoms aren’t the symptoms we see with active infection. Inflammation is a reaction of the immune system, and her immune system is certainly always turned on, but her labs are normal. When the immune system overreacts we usually see it in the blood. We could repeat some of the tests we have already done but I don’t recommend it. There is no real stopping point if we repeat tests indefinitely. 

But why am I still having symptoms if the virus isn’t active? Why are some of them getting worse? It is hard to measure how much worse they are getting. How do you measure discomfort? She has low-grade fevers when she checks her temperature at home. She sweats in the night, or freezes. We tested her small fiber nerves and found nothing. We could go further, we could biopsy the skin and count the microscopic nerves there. This is safe but this is a little invasive. She doesn’t want a biopsy. She wonders if there is anything that can kill the virus she still has. Is there a test that can show if the virus is still damaging me? She worries about catching it again. Would that make the virus stronger? At the same time she worries about getting a booster. She has read online that this helps clear the virus for some people, makes their symptoms go away. She has talked to others online who say it made their symptoms worse. 

Describing presumed causes when asked for observed symptoms is a signal of magical thinking. It’s imperfect, like every signal, and there certainly are cases where patients should skip over a recitation of complaints to tell a doctor what they have, but most of the time the physician should hear what is observed. Because what is observed is the disease itself, or at least the part we can know. The presumed cause may or may not turn out to be the real cause, but to start at the beginning is to start with what you see or feel. 

The notion of pathology (I use the word ambiguously deliberately) spreading through media is a bugbear of the culture war. Satanism, gangster rap, violence in video games, and anonymous Twitter accounts have all taken their turn as targets. Whether the pressure is from the left or right, everybody handwaves the mechanism by which behaviors are transmitted digitally. One side assumes this is possible and the other side either assumes it isn’t or settles on a response approximating “So what? Freedom.” There are tools for thinking about this. Philosophers have been writing about mimetic desire since the 1960s. Nowadays everybody knows what a meme is. But these theories, ironically, don’t really drive pageviews. It’s doubtful whether Charlton Heston had read Girard when he publicly recited the lyrics to Ice-T’s “Cop Killer” or whether Anita Sarkeesian had a clear model of video games as a vector, but both were appealing more to pathos than to logos. 

People with skin in the influence game—the enormous economy of people who in 2022 pay or get paid to influence people online—take very seriously their capacity to teach people what to desire, but it is convenient to believe that this somehow ends with merch sold on Instagram. To suggest that these dynamics work outside the marketplace is…maybe a little cynical? Maybe a little insulting to the dignity of the human? It is to suggest that our agency is somehow more limited than we thought. None of us really feel lesser for buying the pajamas the model wore. But for us to suddenly have the same sickness the influencer had…

She is following up with me after a seizure took her to the hospital. It happened suddenly, at work, with strange movements of one arm and then the other. She was conscious but couldn’t speak. It happened again at the hospital, the minute she was told her MRI was normal. This time we had electrodes on her scalp, and we could tell by her brainwaves that this wasn’t a seizure. But what was it? She is anxious about this, wanting to know what it could have been if it wasn’t a seizure. This is the last thing she needed. Her husband just died, and her company is suddenly in crisis mode: she is working 70 hours a week. 

You rarely get such a straightforward presentation. This is what they used to call conversion disorder. You are likely to get better, I say. The first part of getting better is learning what this is. The second part of getting better is trying to remove some of the stressors in your life. There may be some other parts but we will start there. She is relieved. She is even delighted. She has suspected this all along. You rarely have such a straightforward discussion.

We don’t use the term conversion disorder much anymore. I last saw the term used outside a medical building when police officers fainted on video because they believed they’d absorbed powerful opioids through the skin. Conversion disorder is quite common but it usually doesn’t fit a Freudian script, e.g., we often don’t find a trauma that precipitated the symptom. And it’s no longer really in the domain of psychiatry. Psychiatrists nowadays mostly focus on mood disorders and psychotic disorders. Conversion disorder, which is neither of these, has been subsumed into a more useful category called functional neurological disorder. Functional neurological disorder is an orphan: nobody wants to manage it because it’s stubborn and it shifts shape. Neurologists wind up seeing it a lot, though every specialty sees it eventually. 

One way I explain functional neurological disorder to patients is that it’s a software problem that looks like a hardware problem. The mouse isn’t broken, there’s just a program freezing. This is good news, not bad news. For some patients this is very explanatory. For some it raises more questions. Some patients dislike this explanation, because they know the mouse is broken, and they don’t want to hear about the program.

The best characterized species of functional neurological disorder is the non-epileptic spell (or psychogenic non-epileptic seizure or non-epileptic episode, depending on the way a particular neurologist thinks best explains the phenomenon without misleading or antagonizing a patient). It’s well characterized because we can put electrodes on patients’ scalps and see whether their brain waves are consistent with epilepsy during a convulsion. We have mountains of data on non-epileptic spells, and on how some patients improve, or don’t, and on what seems to correlate with developing a pattern of non-epileptic spells. 

One of the sadder facts of these correlations is that NES often manifests in the siblings of children with epilepsy. It is, in a sense, a transmissible problem. In fact, NES usually occurs in patients who have had some exposure to epileptic seizures or to NES, usually in family or friends, though potentially in media. 

An even more unfortunate fact is that NES often occurs in patients who themselves also have epilepsy. We could theorize about the psychodynamics of epilepsy, the circumscribed lives of sufferers, the disease that is both their affliction and, perversely, the phenomenon that gives their circumscribed lives meaning and raises their suffering to the attention of others. Those theories don’t help you fix the disease, but they may help you have compassion for it. It can be very difficult to disentangle the problems of a patient who may have both epileptic and non-epileptic spells.

Non-epileptic spells can stand in as a microcosm of the whole range of functional neurological disorders, and the two facts above are vital to keep in mind. First, FND is transmissible. It spreads between people in proximity, sometimes from people with some other disease with symptoms that FND mimics, sometimes from FND to FND. Second, the presence of FND doesn’t mean a patient can’t have other diseases, sometimes intimately tangled with their FND. 

Historically, geographic proximity seemed to be necessary for FND to spread. We have lots of examples, some quite recent. In Le Roy, New York, in 2011, tics and twitches manifested in a cluster of teenage girls. Speculations about environmental toxins and conspiracies against public health gave way quickly to the consensus that this was mass conversion disorder. This diagnosis seemed validated as the girls recovered. A year later, in Danvers, Massachusetts (every journalist manages to work in a mention of Salem Village, Danvers’s old name), there was an outbreak of hiccups, mostly in teenage girls. Again, medical investigation found no environmental cause, no pathogenic microorganism, and again the symptoms abated on their own. Like most of the cases in the history books—the nuns who meowed are a popular chapter, if slightly unrepresentative—these episodes occurred in geographically clustered patients.

But even before TikTok took over the internet, there were inklings that these diseases might be transmitted digitally. One of my colleagues, a multiple sclerosis specialist, was surprised by how many new patients showed up with speech patterns matching Selma Blair’s, after a red carpet appearance with a new MS diagnosis in 2019. 

Then, in 2021, I started to hear about skyrocketing incidences of Tourette’s Syndrome. Months before papers were published, emails were being sent from colleagues, and neurologists and pediatricians were talking privately about the surge. Specialists had been surprised, at first, and then overwhelmed. Clinics that treated Tourette’s were seeing floods of new patients, often very atypical patients. Tourette’s has a strong male predominance, but most of the new cases were girls. Tourette’s tics tend to be very specific to the individual, but many of these new cases displayed the very same tics, the very same vocalizations. Some of the American patients’ vocalizations were in an English accent. And some of the patients came in with the diagnosis already in mind: they had diagnosed themselves after comparing their symptoms to prominent TikTok influencers, who were “spreading awareness” about the condition. One of the most prominent influencers was English. 

None of this is to suggest that the girls who presented with Tourette’s that mimicked what they’d seen while scrolling weren’t suffering. They were afflicted—just not by the thing they supposed. Nor does this suggest that among all those new presentations there weren’t actual cases of Tourette’s, or of other diseases that looked like Tourette’s. Original pathology is often mixed in with the transmitted pathology.  

But while this was in some sense mostly a very specific problem with very specific solutions (removing patients from the orbit of social media influencers helps symptoms subside), this was a moment for a larger question of whether social media can drive FND. Here was a very clear example. This question is answered: Of course it can.

The question was poorly posed from the start. A far more reasonable question—a far more scientific question—would not have been whether but how much social media can drive this. Maybe this is very rare, so rare as to be the last consideration as we approach undifferentiated disease. Maybe this is very common, so common it should be among the first things we consider. But to argue it never happens, or that it is the inevitable result of some social media, these sorts of positions pulse with ideological preconceptions. It must never happen, because that would implicate some parts of our culture. It always happens, because that implicates parts of our culture. 

In 2021, Dr. Fauci spoke to the American Academy of Neurologists. He said that he was delighted by all the research going into neurological manifestations of Long Covid. He hoped this would help our understanding of chronic fatigue syndrome, clearly a very similar disease, and one that had defied explanation for many years. Somehow my first patient today knows about this speech. Probably it was reported online. 

My patient discovered she had CFS after reading about it online, and her CFS community has been a rock during a difficult couple of years. She is very interested in any new treatments I have for CFS. Are my Long Covid patients doing better with anything? We talk about options. She is very well informed but very reluctant to try medications. She is very sensitive to any medication, and suffers lots of side effects. We talk about other ways to support her. We discuss how the online communities may filter for the worst cases, for the most alarmist takes. I think it would be a mistake, I say, to really make the disease an identity. I don’t think this disease defines you. She agrees vehemently. Then, towards the end of the visit she explains that she’s thinking about a second career as an advocate for the disease. Maybe go to lobby Congress. She asks if I think this would be a good idea.

Later she contacts me because my notes from the visit don’t clearly state that I diagnosed chronic fatigue syndrome. My notes state that she came to me with this diagnosis. My notes discuss her symptoms. It is very important, she explains, that my notes state very clearly that she has the disease. This would not change the treatments and testing we discussed, I explain. But that’s not the problem. It is very important, she says, that I say she has chronic fatigue syndrome. That needs to be in the official record.

Focusing exclusively on the whether or not is, to abuse another term, a pathognomonic feature of magical thinking. It’s not always the wrong question to ask, but this mode is usually unhelpful in science. A physicist famously exhorted “shut up and calculate” vis-à-vis the philosophical rabbit trails circling quantum mechanics. A good physician, similarly, is to a degree agnostic about disease: all diagnoses are provisional but some are helpful, if they lead to a successful treatment or prognosis; all diagnoses are to at least a tiny degree tentative; all are subject to later revision. They could be well-reasoned but completely wrong. They could be only partly correct—and this may be the most common case, and fortunately partly correct is sometimes correct enough. 

A protester holds up a placard demanding research into Long Covid-19 during the demonstration.
(Photo by Martin Pope/SOPA Images/LightRocket via Getty Images)

But the impulse to treat without fully understanding the disease, while necessary, can fail catastrophically in certain cases. Diagnoses of mercy, diagnostic categories agreed upon by professional organizations to obtain treatment for suffering patients, with no or poor understanding of the mechanism of the disease, lend themselves to abuse. A declaration on official paper is attractive to magical thinking: the expert consensus, you see, means this disease exists, and in a certain way, and absolutely, and we can discard painful ambiguities and nuances. Meanwhile our pictures even of comparatively well-understood neurological afflictions—stroke, multiple sclerosis, migraine—are constantly nuanced and revised.

We reached a declaration on official paper very rapidly with Long Covid. 

You have heard it said, “It’s difficult to get a man to understand something when his salary depends on his not understanding it.” Imagine researchers, advocates, self-proclaimed experts trying to allow room for a disease they’ve staked careers on to be something other than they imagined. Imagine patients who have built identities around a disease. 

Seen one way, the ferocious refusal of some sufferers and advocates to accept that there is a psychogenic component to Long Covid is odd. These are almost never people who deny the reality of depression, or anxiety. These are in some cases people who would advocate for “normalizing” or “destigmatizing” mental illness. But implicit in the impassioned pleas that their own illnesses be defined the way they prefer is a demand that this disease not be allowed to have a psychological contribution. A charitable interpretation would be that they fear their suffering will be dismissed by others if it has a psychological contribution. A cynical interpretation would be that they themselves are prejudiced against psychological suffering. The most cynical interpretation is that accepting that this has at least some psychological contribution might help heal some of them and that they intuit this. 

We should guard against cynicism.

I have a colleague with a huge heart. One of the kindest people I know. She mostly treats brain tumors but, like all of us, she has patients with other illnesses. We are among friends, discussing the search for biomarkers for fibromyalgia.

Because she has a huge heart, she says what we are all thinking, out loud. That would be terrible, she says. Think of all the patients who wouldn’t have the biomarker. What would happen to them?

About the same time journalists began writing about Havana Syndrome, the syndrome migrated from Cuba and began appearing around the world. Diplomats, military personnel, and CIA officers on other continents began to suffer similar nonspecific symptoms. Mostly in countries near Russia, though there were cases in China and in the western hemisphere. Theories that Russia was the culprit seemed to displace concern about Cuba. Russia has more reason to target diplomats in Poland or Georgia.

You can now read official medical reports about the sufferers. Not any specific patient’s medical records, of course, but the conclusions of the investigation. They are written artfully, in medical language that says more than a layperson might hear. They detail extensive negative testing. This is not an answer, this is not a diagnosis, this very carefully does not conclude anything certain about the origins and nothing that could impugn the dignity of the State Department professionals who suffered. The word hysteria would have had consequences, both for the diplomats and for the doctors. Reports do include the phrase “persistent postural-perceptual dizziness.” This is a safe phrase, because few laypeople know that 3PD is a functional neurological disorder, and those who do are typically well prepared to be sympathetic. The more you know about FND, the more prepared you are to accept that it’s common and that it’s real, in the sense that any disease is real, that it’s a real problem that really hurts people.

You don’t hear much about Havana Syndrome anymore. All the same players are still on the board: the diplomats who were targeted, the journalists who breathlessly reported their fears about Russian sonic weapons, the doctors who examined the patients and wrote reports. But the board changed in two important ways. First, another disease captured everybody’s attention. Second, with Russia’s invasion of Ukraine, the fantasy of Russia deploying science fiction brain scramblers became implausible. Russia’s rusty tanks and clumsy logistics aren’t those of a competent mad scientist, or even a modern military industrial complex. Nor are Ukrainians being targeted by brain scramblers. As our imagination of Russia changed, Havana Syndrome melted away. It could always return, as the situation evolves.

A century ago, we would have called this hysteria, and we still could, if we didn’t now consider the term prejudicial. Hysteria is a term with baggage. We all know something about hysteria, usually something complimentary to ourselves. Hysteria is something that afflicts people more neurotic, less stable than we are. Hysteria was a diagnosis of patriarchy: it’s right there in the name, you know. Hysteria was gaslighting, was arrogant medical overreach. Doctors who didn’t know what they thought they knew dismissed patients, institutionalized patients, called real sickness fake, said it was all in your head to preempt the search for a real explanation, whether heavy metal poisoning or abuse or NMDA receptor encephalitis.

If you know a little more about hysteria, and a little more of the history of medicine, what you know is that there was a sudden and abrupt decline in the diagnosis. Hysteria was incredibly common in the first quarter of the 20th century, and then it just stopped. Explanations for this include that the generation of the fin-de-siecle and their children and possibly grandchildren were more repressed and thus more neurotic, or at least expressed their neuroses differently; that doctors got wilier (nobody really thinks doctors became more humble) and stopped using this inappropriate diagnosis; or that diagnoses became more refined, and thus more specific, and that a primitive overbroad category gave way to more useful narrow categories. 

Whatever caused the change, one doesn’t use the term any more, unless one is a scholar of Victorian literature, and then one must be careful to only talk about people talking about the term, and not to discuss it as a plausible model of suffering. They tried to cancel Elaine Showalter for this in the 1990s, after she put forward the view that hysteria never left at all. 

So we use the term functional neurological disorder now, not because it’s perfect but because it’s the best term we have, the most neutral, the most descriptive, and we try very hard not to make the term prejudicial. This is difficult. I encourage you to avoid searching social media for the voices who are outraged that this diagnosis even exists and calumniate the professional organizations that exist to try to understand it better.

Havana Syndrome was another specific syndrome with a specific solution. A global pandemic and Vladimir Putin solved what doctors couldn’t. But like TikTok Tourette’s, Havana Syndrome was a moment. It was the first time in living memory when functional neurological disorder prominently clustered in a very high status population. Nobody can argue that career State Department employees, armed with masters degrees from Georgetown, esteemed by the journalists who would write their stories, known to the legislators who set aside money for their diagnosis and treatment (Congress voted unanimously!), are the subaltern. They aren’t the victims of patriarchy, or of any notable oppression. Nor, to preempt any sort of revanchist chauvinism, were they the wrong class of people, the people you might discount as superstitious or low-information. Were they particularly easily influenced? They had probably read books about groupthink, about the mind-body connection, possibly even about the history of hysteria. But their education and their resumes and their security clearances didn’t protect them from catching a disease mimetically, from colleagues in other countries.

There are two traps one can fall into when discussing functional neurological disorders. The first is anger and the second is contempt. One can be angry at doctors who diagnose it (sometimes, inevitably, incorrectly) and don’t diagnose a real disease. Or one can be contemptuous of patients who have it because they’re taking attention from people with real diseases. 

Both these traps involve the same error and both moods can batten off each other. People who believe the diagnosis is insulting and people who believe the sufferers deserve to be insulted have the same prejudices. But falling into at least one of the errors is almost inevitable if you don’t believe FND is a real disease. You could debate the nature of real disease forever but I will skip to the end and say FND is, at least, no less real because it is a disease of the brain. Many diseases come from the brain. And it is no less real because there is not currently a scan or a blood test that can diagnose it. It does raise uncomfortable questions about agency and these, too, you could debate forever. But if you object to the diagnosis in anger, ask yourself: are you angry that some other diagnosis is being missed, or are you angry that this diagnosis isn’t what you think a disease should be? And if you have contempt for the patients, ask yourself, what standard does a sufferer need to meet to avoid your contempt? 

My friend treats a lot of Long Covid, and he’s accustomed to seeing symptoms of all sorts. But this patient is particularly difficult. He’s very high functioning, executive level, and he’s absolutely convinced that his thinking is going. All his testing is negative, and mostly his other symptoms are doing better, but every visit he comes in with a list of problems that all revolve around his thinking. Dozens of examples he’s written down. He’s not getting lost, he’s not having problems at work, but the brain fog is so stubborn… The MRI of the brain was fine. Even the blood vessel imaging. 

We could send him for formal neurocognitive testing, I say

Yes, I know, but the neurocognitive testing never shows anything with patients like this. And then we’re back where we started and he’s even more frustrated.

As physicians have gradually become agents of public health, they’ve encountered a dilemma: the doctor the patient in front of you wants may not be the doctor the broader community needs. Or: the doctor the patient in front you needs may not be the doctor the broader community is asking for. It is not easy being devoutly attentive to a patient while moonlighting as a social scientist.

Economists are casually capable of an insight that physicians often find difficult. The insight is either beautiful or brutal in its simplicity: you get more of what you reward. This is it, this is the whole principle, and it skips past all psychology, all sociology, all the vague principles and overprecise minutiae of public health.  

Economists don’t have to know the histories of individuals, or how they are making their choices, or even whether they are making their own choices for themselves. It holds true even if it’s not a choice as we usually understand it, with a single point of decision and clearly understood options. If you reward it, the people will come. If you reward it less, fewer people will come. The law of large numbers means exceptions don’t change this. To a patient, his disease may be idiosyncratic and of mysterious origins. It may be truly different than the disease of the patient with the appointment after his, even if the diseases have the same name. But this doesn’t matter in aggregate.  

This is something to keep in mind when we talk about “spreading awareness.” This is something to keep in mind when we talk about devoting more resources to a disease. 

There are trade-offs for everything, of course. The economists would be the first to agree. Resources are necessary to do research and to treat patients. Resources are being poured into Long Covid. Studies are being published and many more will be published. Predictably, correlations are being found. Functional MRI studies, searches for micro-clots, long-term heart rate tracking, tests of repurposed drugs, lots of preliminary claims that the riddle has been solved. It won’t be, but somebody may find a biomarker that applies to some of the patients. Somebody may find a medicine that consistently helps some of the patients. Meanwhile, other studies will find correlations with mood, with demographics, with political attitudes, with media exposure, with a dozen things that undercut plans to treat Long Covid in aggregate as something other than functional illness. 

We will continue to talk about Long Covid for a while. It may seem like we will talk about it forever. Some of the advocates for the disease expect it to be around forever. But however long the disease lasts, eventually the conversation will move on. A famous doctor will give a speech suggesting that research on some other disease may shed light on the mystery of Long Covid. Journalists will for a while continue to write articles, some more sympathetic than others. Some extremely sympathetic. 

The exotic disease beat will move on. There will be a more pressing disease. 

This was her fifth or sixth appointment and I was, to be honest, dreading it. She had screamed at me a few months prior. She wanted a medication she could take once, or a surgery, or some kind of plan other than time and physical therapy, and sleep, and changing some of the things that made her miserable, and treating her symptoms as they came. I wasn’t sure why she hadn’t fired me. But today she is walking again. It is the first time I have seen her walk. The electrical tests showed that her nerves and muscles were fine last year, but this is the first time I have seen her out of a wheelchair. She is very happy. It may come back, we agree, it could always happen again, but we should be optimistic. She’ll probably continue to get better. If it does come back, we’ll handle it again. No need to make another appointment, we agree. We can wait and see how she does.

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