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MaineHealth researchers lead effort to unlock long COVID mystery

Enrollment for the study on long COVID, which will involve 90 patients, begins in December.

MAINE, USA — So-called "long COVID" is emerging as one of the biggest health problems during the pandemic. Studies now show more than 40% of patients worldwide have lingering and often debilitating symptoms months after their initial infection. 

Researchers from Maine Medical Center Research Institute will lead the nationwide effort funded by a $1.5 million grant from the National Institutes of Health.

Scientists are hoping to find answers to one of the biggest medical mysteries of the pandemic: Long COVID's cause and why it impacts such a wide range of patients from breakthrough cases, high-risk patients with severe symptoms, to others who were barely affected. 

"Patients who have positive PCRs but have no symptoms or mild symptoms, do they develop long COVID? We just don't know," Dr. Cliff Rosen said.

Rosen is the director of the Center for Clinical and Translational Research at MMCRI. He is the principal investigator of a nationwide study known as the Researching COVID to Enhance Recovery or RECOVER initiative. With a $1.5 million grant from the National Institutes of Health, researchers will be enrolling 90 adult patients across the Maine Health system.

In March of 2020, Kate Mueller started experiencing what she thought was pneumonia. She had shortness of breath, fever, body aches, loss of taste and smell, and exhaustion. The symptoms got better for about a month.

"Then the wheels sort of came off. It was like I got sick all over again, except much worse," she said.

In the early days of the pandemic, tests for COVID were very limited. Weeks later, when she was able to get one, it came back negative.

Mueller, who had previously competed in triathlons and through hikes on the Appalachian Trail, found herself being unable to get out of bed. Numerous specialists found nothing wrong. Eventually, it was determined that Mueller had long COVID. 

Symptoms of long COVID include joint pain, headaches, fatigue, "brain fog," anxiety, depression, fevers, chronic cough, sleep problems. There are new and recurring symptoms as well that continue months after acute infection.

The Centers for Disease Control says post-COVID conditions (or long COVID) can affect more than a third of all patients. Scientists said so much is still unknown, and there is also no test to diagnose it or approved treatment available.

"I still have no taste, no smell, absolutely zero," Dr. Hagen Blaszyk said.

Blasyzk is a pathologist who came down with COVID in September. Vaccinated in January, he got a breakthrough infection most likely caused by the Delta variant. He still has persistent brain fog, fatigue, and other symptoms and wonders how long they will go on.

"Will I be ok six months from now, or will it never be ok?" Blaszyk asked.

In the meantime, Mueller's health has improved after being vaccinated against the virus. She is now considering signing up for the study.

"Without folks participating in studies like these, we won't have answers," Mueller said.  

Interested patients can contact Rosen by email.