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As one health crisis wanes, another begins: Long COVID on the rise

  • Maria Pacelli stands in her mother’€s former room in her home in East Concord where she spent many a day recovering from her COVID symptoms.

  • Maria Pacelli sits in her meditation room with her Siamese cat in her home in East Concord. After a grueling 10-day stay at the hospital in 2020 and months of chest X-rays, Pacelli thought her fight with COVID-19 was finally behind her. But nearly two years after her diagnosis, the Concord local still manages symptoms like phantom smells, fatigue and a persistent cough. GEOFF FORESTER—Monitor staff

Monitor staff
Published: 4/21/2022 11:08:14 AM

Maria Pacelli is often struck by the sickly-sweet stench of rotting onions.

The inexplicable smell is not a product of the environment but of her brain, thanks to long COVID, a syndrome that wreaks havoc on the body long after the COVID-19 virus vacates cells.

After a grueling ten-day stay at the hospital in 2020 and months of chest x-rays, Pacelli thought her fight with COVID-19 was finally behind her. But nearly two years after her diagnosis, the Concord resident is still dealing with symptoms like phantom smells, fatigue, and a persistent cough.

Headaches appear so regularly in the morning, that her husband stopped asking whether her head hurt and instead asks how bad it is.

To Pacelli, whose mother suffered from dementia, the scariest part of long COVID is the toll it has taken on her memory. She struggles to remember words or recall conversations she had hours earlier.

“The word retrieval stuff makes me really concerned,” she said. “My friends are quite used to now jumping in and finishing my sentences for me or filling in the gap.”

One of New England’s few clinics that specializes in long-COVID is seeing a surge in patients like Pacelli. Dartmouth Health’s Post-Acute COVID Syndrome Clinic saw an unprecedented number of referrals in March and April is already on track to be equally busy, said the clinic leader, Dr. Jeffrey Parsonnet.

“We have more referrals to the clinic last month than we did even when we first opened our clinic and there was pent-up demand for it,” Parsonnet said.

This is likely the aftermath of a particularly brutal surge in COVID-19 cases this past winter. Between December 2021 and January 2022, more than 120,000 people tested positive for COVID-19, according to state data that is likely an underestimation due to uncounted at-home rapid tests.

Researchers conservatively estimate that 10% of people with COVID-19 become “long haulers” which roughly translates to tens of thousands of Granite Staters with persisting symptoms.

Post-Acute COVID is an amorphous syndrome, with no single test to confirm a diagnosis, no exhaustive list of symptoms, and no obvious cutoff for when COVID ends and long-COVID begins.

Parsonnet said patients often display a bevy of nonspecific symptoms: anxiety, depression, insomnia, fatigue that incapacitates them for days at a time and a “brain fog” that leave patients grasping for words.

Researchers don’t yet know the biological mechanism that’s causing these problems, which means care is largely targeted at treating individual symptoms, rather than the root cause of the condition.

The condition does appear to be a neurological disease, Parsonnet said, perhaps brought on by a delayed immune reaction to the virus. Even common symptoms like shortness of breath and a rapid heart rate are rooted in problems with the autonomic nervous system.

“People are getting referred to the clinic who have had these elaborate workups for heart disease,” he said. “I haven’t seen an abnormal one yet, after hundreds of patients. The heart is fine. What’s happening is that the brain is telling the heart to go fast.”

Many of the people referred to the clinic share similar demographics, Parsonnet noticed after almost a year of helping long-COVID patients.

About 75% of the referrals to the clinic are women, which is in line with other similar clinics across the United States, he said. The gender skew could be explained by the well-documented tendency for women to seek out medical care more often than men.

Parsonnet said it’s more likely that COVID-19 produces different immune responses in men and women. This difference may also explain why women are less likely to die from the virus.

His patients also tend to be middle-aged and have recovered from a mild COVID-19 infection.

“If you look at the early data on post-COVID, there was the misimpression that if you had severe COVID to begin with, you’re more likely to have long COVID, but that’s not true,” he said. “The vast majority of patients that we’re seeing now had mild to moderate initial disease.”

To his dismay, he also noticed recently that many of his patients had been vaccinated. He said this likely means that while vaccines help prevent people from getting COVID-19 in the first place, it doesn’t stop them from developing long COVID once they’re infected.

“That’s depressing because it means we’re going to continue seeing cases,” he said.

After nearly two years with long-COVID, Pacelli has made peace with her chronic illness.

Some of life’s joys are blunted — conversations with friends are still stymied by her short-term memory, the aromas in wine are less pronounced — but the symptoms are livable at this point, she said.

What scares her now is what damage the syndrome could do years in the future.

“If nobody expected two years out for somebody to still be having symptoms, what about ten years out?” she asked. “Something has happened to my brain— what does that mean for me down the road?”

Not even Parsonnet can answer those questions. He said people’s symptoms seem to get less severe over time but the long-term behavior of the syndrome is unknown.

“I used to tell people that I think you’re gonna get all better, but I stopped doing that because I think some people haven’t,” he said.