If You’re Suffering After Being Sick With Covid, It’s Not Just in Your Head

When the influenza pandemic of 1918-19 ended, misery continued.

Many who survived became enervated and depressed. They developed tremors and nervous complications. Similar waves of illness had followed the 1889 pandemic, with one report noting thousands “in debt and unable to work” and another describing people left “pale, listless and full of fears.”

The scientists Oliver Sacks and Joel Vilensky warned in 2005 that a future pandemic could bring waves of illness in its aftermath, noting “a recurring association, since the time of Hippocrates, between influenza epidemics and encephalitis-like diseases” in their wakes.

Then came the Covid-19 pandemic, the worst viral outbreak in a century, and when sufferers complained of serious symptoms that came after they had recovered from their initial illness, they were often told it was all in their head or unrelated to their earlier infection.

It wasn’t until the end of the first year of the pandemic that Congress provided $1.2 billion for the National Institutes of Health, which led to a long Covid research initiative called Recover, in February 2021. A year and a half later, there are few treatments and lengthy delays to get into the small number of long Covid clinics. Frontline medical workers don’t have the clinical guidelines they need, and some are still dismissive about the condition.

Long Covid sufferers who caught the virus early have entered their third year with the condition. Many told me they have lost not just their health but also their jobs and health insurance. They’re running out of savings, treatment options and hope.

To add to their misery — despite centuries of evidence that viral infections can lead later to terrible debilitating conditions — their travails are often dismissed as fantasy or as unworthy of serious concern.

Making matters worse is the general confusion that surrounds what exactly long Covid is. Current definitions are so broad and imprecise that they impede understanding.

The Centers for Disease Control and Prevention defines long Covid as having “a wide range of symptoms that can last more than four weeks or even months after infection.” The World Health Organization sets the line at three months and says symptoms must last “for at least two months and cannot be explained by an alternative diagnosis.” Both highlight fatigue, shortness of breath, cognitive dysfunction, brain fog, pain, digestive symptoms, depression, anxiety, cough, headache and sleep disturbances.

Under the C.D.C. definition, someone with a single symptom just four weeks after illness can be lumped under the long Covid umbrella with someone bedbound for years.

However, it’s been long known that many respiratory illnesses can cause lingering symptoms. One study found that about 30 percent of people with influenza had at least one symptom that would qualify as long Covid in the three and six month period after the acute illness, compared with about 37 percent of those who had Covid.

The symptom descriptions for long Covid are too vague. Do “brain fog” and “fatigue” mean people don’t feel as sharp as they were and are a little off their jogging times, or are they experiencing a cognitive crisis so profound that they cannot find words and are so fatigued that brushing their teeth leaves them unable to get out of bed for the rest of the day? The latter has happened even to some people who had mild bouts of Covid-19.

One of the most important findings is that, as with many other illnesses, the elderly or those already in frail health seem more likely to have ongoing issues, especially if they had severe cases of Covid.

Existing definitions fail to capture the subcategories of long Covid, with different symptom clusters and levels of severity and persistence, creating an obstacle to research and treatments.

A clinical trial that doesn’t differentiate among subcategories could miss signals of promising results that would help one group and not another.

Treatments, too, would differ. Some long Covid patients crash after even limited physical or cognitive effort. Staying within their limits, or pacing, is crucial. However, many told me their primary care physicians would tell them to condition themselves through increased activity. That’s sensible advice for others with mild deconditioning due to lingering symptoms, but it made them feel worse and resist the advice. Some told me that their physicians then saw them as stubborn and lazy.

In addition, if everything is long Covid, then some may suspect nothing is, fueling more mistrust.

In late May the C.D.C. reported that one-fifth of U.S. adults under 65 who had Covid experienced symptoms that “might be attributable” to their previous infection. The administration’s response to such studies didn’t seem to fit the scale of the seeming threat if, indeed, 20 percent of those who have had Covid are at risk for debilitating chronic illness.

We lack proper studies under any definition. So, as with the study that led to the C.D.C.’s long Covid estimates in May, researchers cobble together data from electronic health records, often billing codes, which are standardized diagnostic codes for insurers. It’s already recognized that such databases are too imprecise for research purposes and may be biased because they collect information only on people in the medical system. Making the interpretation even thornier is that if billing codes weren’t in patients’ files before they had Covid and they appeared in the files later, the C.D.C. paper classified them as “might be attributable” to Covid, regardless of what they were.

Plus, some of the science has been truly weak. While poring over that C.D.C. paper, I noticed it didn’t control for prior health status and age between those who were infected and the control group; without that, I don’t even know how to interpret the already muddled results.

Perhaps the best sense of long Covid’s prevalence comes from an ongoing British national survey that asks whether people were experiencing “symptoms more than four weeks after you first had Covid-19 that are not explained by something else.” Unfortunately, it has no control group and likely includes people without Covid who may be suffering from some symptoms tied to a stressful pandemic. Plus, four weeks is not enough time to weed out temporary issues.

However, even with those imperfections, 2.8 percent of those living in Britain in July said they experienced ongoing symptoms they attributed to having had Covid. Encouragingly, those numbers indicated declines over the past few months. However, 2 percent of those living in Britain said those symptoms had affected their day-to-day lives, and 0.6 percent reported that their daily activities had been “limited a lot.”

Just that is a very large number. For the United States, 0.6 percent of the population would mean about two million people potentially facing a debilitating condition, comparable to those expected to be diagnosed with cancer this year. Plus, the prospect of increased medical issues adds another category of concern besides self-reported symptoms.

Given so much evidence about postviral conditions, why wasn’t more done more quickly to address long Covid?

“Medicine doesn’t like what it can’t understand, so it often ignores it,” Ravindra Ganesh, a physician scientist who directs the post-Covid care clinic at Mayo Clinic, told me.

It’s increasingly clear that postviral conditions are key to understanding many illnesses.

People with multiple sclerosis were once told they had a conversion disorder — the historic catchall for “It’s in your head, dear.” Later, advances in imaging allowed cerebral lesions to be seen. Genetic and environmental conditions were later invoked as possible causes. However, this year a multidecade study showed something that was previously met with skepticism: multiple sclerosis follows from infections of the Epstein-Barr virus, sometimes even decades later.

Possible viral causes of cancers were largely scoffed at until 1984 when, armed with advances in genomics, Dr. Harald Zur Hausen tied the human papillomavirus to many cancers. In 2007 a vaccine for the human papillomavirus was approved, which, if everyone got vaccinated, could eliminate about 5 percent of cancer deaths, by my estimate.

Then there’s myalgic encephalomyelitis/chronic fatigue syndrome, an ailment that can leave previously healthy people bedbound and severely limit their physical or cognitive abilities. As many as three-quarters of M.E./C.F.S. patients trace their illness to an infection. But these patients have long been battling neglect and suspicion, with minuscule research devoted to the condition.

M.E./C.F.S. patients were among the first people to raise alarms about long Covid in the spring of 2020, quickly noticing that a subset of long Covid patients seemed to suffer from a very similar ailment. Since then, the number of studies showing connections between Covid and a variety of chronic disorders and later medical problems has grown, as well as the recognition that the Covid virus is not the only virus to do so.

Recently, Danish researchers found an association between neurodegenerative disorders such as Alzheimer’s and Parkinson’s and not just Covid but also influenza.

Studies have shown a heightened risk for cardiovascular disease from Covid and the flu. A randomized study of heart patients found that those who had been vaccinated against influenza had 40 percent less chance of death within a year.

The scale of the pandemic has made the importance of postviral ailments harder to deny and the need for research greater, but we have not yet risen to the task.

After Recover’s February 2021 start, the National Institutes of Health put out calls for research proposals. However, it took until early June 2021 for the first awards to go out and until September for N.Y.U. Langone Health to be put in charge of a $470 million study that accounts for almost 40 percent of Recover’s funds for long Covid research.

The study called for observing about 40,000 people in different cohorts, without any intervention. As of Aug. 23, it has enrolled only about 7,600 adults, out of a target of 17,680, and about 624 for its pediatric cohort, out of a target of 19,500. (Here’s where to sign up.)

One of the chairs of Recover, Gary H. Gibbons, the director of the N.I.H.’s National Heart, Lung and Blood Institute, told me this is fast by historical standards — but we’re racing against the pandemic, not history.

As with the rest of our pandemic response, the fragmented nature of our health care system has been a problem. Recover has begun recruiting from more than 200 sites, which is, unsurprisingly, unwieldy.

In addition, while the study was trying to move forward, the Omicron wave may have infected at least 60 percent of the country with the Covid virus. There are only 940 uninfected recruits in the Recover study, out of a target of 2,680. Such shortfalls make it harder to have control groups of sufficient size.

Stuart Katz, a New York University cardiologist and the Recover study’s principal investigator, told me in mid-June that the study was trying to modify the protocol in response to the Omicron wave, especially to recruit people infected more than once. However, he said, such an update requires an approval by the Recover Steering Committee, the N.I.H. Executive Committee and the N.I.H. Observational Data Safety Monitoring Committee. As of mid-August, the protocol update hadn’t been enacted.

In addition, Dr. Katz explained, it took months to get the questionnaires and documents for the patients through health literacy reviews to make sure they were clear, then translated into different dialects of Spanish and reviewed by focus groups. Having proper material is a laudable goal, but when it all takes so long, the benefit is surely lessened.

Then there are more than 15 pages of legally required informed consent documents, intended to protect patients from unethical research. But does having people wade through 15 pages truly inform or protect them rather than just fulfill a bureaucratic requirement?

The N.I.H. and Dr. Katz told me that they expect to meet their targets by the end of this year. I hope so, but this is a stark example of how U.S. research struggles even when hundreds of millions of dollars is allocated to it.

In contrast, Britain’s similarly named Recovery trial to study treatments for Covid, with only about $2.5 million in funding, uses its integrated National Health System and quickly enrolled tens of thousands of people since March 2020, producing results that include highly effective cheap drugs, such as generic dexamethasone, that — I believe — likely saved millions of lives.

Meanwhile, progress on trials for treatments hasn’t even begun in a serious way.

Nick Güthe, a patient advocate on the Recover committee that considers treatments and therapeutics, and who lost his wife to suicide after debilitating long Covid, told me that it meets every other week for about an hour and ranks potential treatments but that there seem to be no trials of any of the suggested treatments.

Dr. Gibbons told me all this takes time because they want to be sure that any treatments are safe and effective. He also said that they are in talks with pharmaceutical companies to start some drug trials this year.

It was only at the end of April of this year that Recover called for proposals for drug-related clinical trials, with protocols only now being developed. Beyond Recover, I could find references to just two N.I.H.-funded long Covid drug treatment studies at ClinicalTrials.gov, where such studies are reported. One has begun. In addition, the Department of Veterans Affairs has funded at least one study.

Sufferers are losing patience. Diana Berrent, the founder of a long Covid support group called Survivor Corps, with almost 200,000 members, told me people were so desperate that when she asked them about scam treatments they faced, some asked her to let them know if she knew of any — so they could try them.

Daniel Griffin, an infectious disease specialist at Columbia University, thinks clinical trials should be done on any treatment that many patients are trying — if only to weed out useless ones. “And who knows?” he said. “Maybe, there’s a sleeper treatment lurking among the candidates.”

Akiko Iwasaki, an immunologist at Yale University, told me that there should be clinical trials, especially of antivirals — like Paxlovid — because she suspects that a subset of long Covid might be caused by reservoirs of viruses that settle in the body.

Meanwhile, patients face an uphill battle to get help.

Many clinicians who treat long Covid told me they just had to concoct treatment protocols themselves from experience and research and listening to the patients.

Primary care physicians are even less prepared. Patient after patient told me of even well-meaning doctors throwing up their hands because they simply didn’t know where to begin.

It’s easy to get angry that one study or another is going too slowly or that more funding hasn’t been appropriated. But to fix these deficiencies and overcome these obstacles, a whole new approach is needed.

The science of postviral conditions is complex and too little understood. It involves the immune system, autoimmune conditions, neuropsychiatry, cardiovascular mechanisms, metabolic systems and viruses themselves. It requires large multidisciplinary teams chasing many leads, sometimes with tedious replication and incremental work that will inevitably lead to some dead ends.

But solving this puzzle could be revolutionary, unlocking the door to understanding many conditions that cause much human suffering.

The 1971 National Cancer Act changed the way scientists deal with disease, pouring money into prevention, detection and research.

Scientists battling debilitating, chronic conditions like long Covid and other postviral conditions deserve this sort of commitment in leadership, funding and recruitment to get the best minds in the fight.

We need a National Institute for Postviral Conditions, similar to the National Cancer Institute, to oversee and integrate research. Neither academia — prone to silos and drawn to work that leads to notable publications, which can leave important questions underexplored — nor the private sector — focused on profits — is up to the task alone.

With such an initiative, we could honestly tell so many looking for answers that help is on the way.

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