A leading reporter and expert share what we’re learning about ‘long COVID’

Since COVID-19 “long-haulers” first appeared in headlines last spring, physicians, scientists and journalists alike have struggled to understand these patients’ complex symptoms, which range from brain fog to heart problems and even psychosis in rare instances.

Increasingly, there is a sense there could be multiple causes and pathways underlying the condition, said Pam Belluck, a health and science writer for The New York Times who writes about COVID survivors with long-term symptoms, or long COVID.

“It’s really fascinating, as a reporter, to learn about these things,” she said. “It’s also flashing yellow caution lights at every point to make sure you’re not jumping to conclusions and trying to get the best sourcing and scientific understanding that you can.”

Belluck joined David Putrino, a physical therapist with a Ph.D. in neuroscience who cares for long COVID patients, in a recent Center for Health Journalism “Covering Coronavirus” webinar. They discussed the latest treatment developments, the challenges of covering the emerging science and the worrying presence of health disparities among people receiving care for the condition.

Complex symptoms, unknown causes

Putrino, the director of rehabilitation innovation for the Mt. Sinai Health System in New York City, first started seeing patients with long COVID in late April 2020.  Patients who had recovered from COVID were experiencing persistent symptoms they couldn’t shake or developing new symptoms over time.   

Some couldn’t concentrate, others couldn’t find the right words, and still other struggled with executive function or emotional control. Some experienced physical symptoms such as shortness of breath or headaches, while others battled crippling fatigue that made a morning shower an ordeal.

“That was where we started to suspect what we were seeing was a post-viral syndrome,” he said.

Putrino and his colleagues are now tracking 60 or more distinct symptoms and developing best practices for treating what may be many different syndromes.

Anywhere from 10% to 35% of people who experience an acute COVID-19 infection will go on to get symptoms consistent with long COVID, he said. But an exact definition of the condition is still being developed, he said. (And so are new billing codes that let medical providers bill for treatments.) For example, some people might exhibit symptoms that can be connected to a medical cause such as lung or heart damage. Many others, though, receive medical tests that fall within normal limits, leaving their symptoms seemingly unexplained.

The lack of physical evidence on medical tests has meant a lot of people’s symptoms have been dismissed as “psychosomatic,” Belluck said. But that is changing.

“I think we’re at a moment when … fortunately the NIH and others are starting to elevate the profile of this,” she said. “But there are a lot of people who are floating in this purgatory right now.”

Treating the triggers

In his work with long COVID patients, Putrino focuses on what triggers patients’ symptoms and how people can address them. He said symptoms often occur when the autonomic nervous system, which regulates functions like breathing, heart rate and digestion, is out of balance.

For example, someone’s symptoms might intensify after a hot, humid shower that quickly increases heart rate. Slowly increasing the water temperature can help avoid a cascade of symptoms.  

Since many patients experience low carbon dioxide levels, it is also proving helpful to enlist breathwork coaches, Putrino said. These coaches, who have worked with high-performing athletes, help patients slowly increase their carbon dioxide tolerance.

His clinic has also brought on physical therapists who are trained to pursue the “slowest most agonizing” level of rehabilitation. That’s because if you push too hard with long COVID patients, they can be sidelined for days as they recover, Putrino said.

His team’s strategies are producing tangible symptom improvements, most notably on fatigue levels, he said. It’s common to see 30% to 40% improvement in patients after 150 days of treatment, he said. “It’s working but it’s working incredibly slowly.”

Disparities in access and research

While more and more post-COVID clinics are springing up throughout the country, Belluck said, they are still not widespread, which means the people seeking care have determination, resources, and often private insurance. They tend to be people who went to their doctor, were tested for COVID-19, and persisted until they found a post-COVID clinic willing to take them.

“That’s just by definition a fairly limited group of people,” she said, adding the populations are often white and affluent enough to take time off work. That’s not necessarily a representative pool of those dealing with the condition, however, especially since we know the pandemic has had an outsized impact on communities of color and essential workers.

Putrino has also been acutely aware of these health disparities, especially since many people of color and lower socioeconomic status were not able to get tested for COVID-19 when they fell ill. Without that positive test on record, it has been hard to include them in research on long COVID, Putrino said.

“Suddenly, I have been watching a health disparity emerge in front of my eyes and that’s been distressing and frustrating,” he said.

Reporting on uncertainties

When Belluck is talking to patients with long COVID, she does as many “different cross checks” as possible. She asks to talk with their physician and see their medical record. She asks whether the post-COVID symptoms are new or perhaps part of something they have experienced before.

In her stories for the Times, Belluck is also takes pains to emphasize our understanding of the condition is a dynamic, developing area and some aspects are bound to change.

She advised reporters to establish their own safeguards and “have the courage to go against the grain in terms of the media world.” That might mean, for instance, not writing about a long COVID study with serious limitations or weaknesses.

In her coverage moving forward, Belluck is interested in exploring what treatment options and strategies are working for long COVID patients, how long these approaches takes and what is required from patients and providers. If it is a time-consuming regime, who will be able to follow it? And will insurers pay?

She’s also interested in interviewing patients experiencing cognitive or other neurological symptoms who previously worked fulltime but can no longer. She recalls talking to an operating room nurse who could not remember the name of scalpel and a lawyer in her 30s who couldn’t recognize her own car in her apartment’s parking lot. What happens next for these individuals?

These are not rare stories of failed recovery. Given the number of people who were infected with the novel coronavirus and the large share of those now coping with long COVID, these are stories likely to be found in nearly every community across the country.

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Watch the full presentation here: