Maine researchers, patients help shed new light on mysteries of long COVID - Press Herald

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A newly published national study that involved Portland-based researchers and Maine patients is shedding new light on the mysteries of long COVID, which leaves some infected people with a range of chronic symptoms.

The research found that patients who were unvaccinated, who contracted COVID-19 before the 2021 arrival of the omicron strain or who were reinfected with the virus were more likely to contract long COVID-19 and have more severe symptoms.

It also identified 12 core symptoms that are most associated with long COVID, including brain fog, fatigue, post-exertional malaise, dizziness, heart palpitations, loss of smell or taste, and chest pain.

Results of the study are seen as an important step toward understanding the disease and, ultimately, treating it. Dr. Clifford Rosen, principal investigator for the MaineHealth RECOVER program, said Friday that the research is groundbreaking, but there’s much more to do.

“It’s a start. This really helps us define what long COVID is,” Rosen said. “It’s a multitude of symptoms, with multiple complex pathways for post-viral conditions to present itself in patients.”

Estimates vary, but perhaps 10% to 25% of those who contracted COVID-19 continue to have symptoms months or even years after the initial infection. Reported cases show about 325,000 Mainers have contracted COVID-19 since the pandemic began in March 2020.

The MaineHealth Institute for Research in Scarborough studied and tracked the symptoms of 120 of the roughly 10,000 U.S. patients involved in the yearlong study. MaineHealth received a $1.5 million federal grant for the research, called RECOVER (Researching COVID to Enhance Recovery).

Rosen said another national study that MaineHealth is participating in – with an $800,000 grant – will examine whether the virus can hide in fat tissue, one of the potential causes of long COVID-19.

Dr. Cliff Rosen of the Maine Health Institute for Research is leading the long COVID research effort at Maine Health. Carl D. Walsh/Staff Photographer

And yet another study, which is not finalized but may begin in July, Rosen said, would look into whether taking monthlong Paxlovid prescriptions helps long COVID patients. Paxlovid is an oral medication used to treat COVID-19, but it hasn’t been approved yet for long COVID.

“If we can find the virus, then know how to treat the virus. These are huge steps forward,” Rosen said.

The national RECOVER study – published this week in the Journal of American Medicine – was co-authored by Ivette Emery, translation scientist at MaineHealth Institute for Research.

“We are incredibly grateful to our study participants, many of whom continue to suffer with few answers, for helping us take this first step toward understanding this condition,” Emery said in a statement.

Marie Follayttar, 46, of South Portland, who was one of the RECOVER study’s participants, said she is grateful to have been part of the study, and she is doing occupational therapy to help control her symptoms.

“Any data tracked over time with a cohort of people is going to yield data that will be helpful,” said Follayttar, who contracted COVID-19 in October 2021 and is still experiencing symptoms. She has also since been diagnosed with hairy cell leukemia. “You can see, ‘Oh, I improved here and didn’t improve there.'”

Follayttar said the good news is her sense of taste and smell have returned, but she still suffers from brain fog, post-exertional malaise, loss of appetite, gastrointestinal symptoms and other problems. Even though hairy cell leukemia is highly treatable, having both conditions at once makes it difficult to coordinate care and get the help she needs, she said.

Marie Follayttar, a long COVID patient who is also part of a long COVID research program at MaineHealth, still suffers from brain fog, post-exertional malaise, loss of appetite, gastrointestinal symptoms and other problems. Shawn Patrick Ouellette/Staff Photographer

Follayttar said she was disappointed when MaineHealth closed its Portland long COVID-19 clinic in January.

“They’ve locked people out of at least one place where providers with a long COVID lens could examine a long-haul patient and put their complicated health picture together,” Follayttar said.

Caroline Cornish, a MaineHealth spokeswoman, pointed to a November statement about the clinic’s closure, which shifted care to the primary care system.

“As our providers have learned more about long COVID, it has become clear that our long COVID patients are best served by managing their health through their primary care team, who has the full picture of each patient’s medical history, instead of at a separate post-COVID clinic,” the MaineHealth statement reads.

Meanwhile, there are several federal proposals to help long COVID-19 patients, Rosen said, including efforts by U.S. Sens. Susan Collins and Angus King.

“Research is only one component of what do we do. We have to provide these people with treatment options,” Rosen said.

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