Patients across the Inland Northwest suffering from long COVID-19 have an opportunity to be a part of the science and research seeking to find treatments and answers.

Providence Sacred Heart Medical Center is one of a handful of sites in the Pacific Northwest cohort of hospitals researching long COVID as a part of an initiative from the National Institutes of Health.

Institute for Systems Biology, a Seattle-based organization, received the federal contract for the study in the Pacific Northwest and is partnering with Providence hospitals throughout Washington and California to follow, test and potentially treat long COVID patients.

The study is called The RECOVER initiative and is looking for about 1,000 participants in the Pacific Northwest 18 and older to be a part of a four-year study.

COVID-19 can have debilitating and devastating long-term consequences, from heart, lung and kidney damage to chronic fatigue, brain fog and other symptoms.

Some people have lost their sense of smell entirely; others can no longer work due to the constant fatigue or brain fog brought on by the virus.

Long COVID patients in Eastern Washington have had to rely on their primary care providers for care due to no specialty clinics available east of the Cascades.

Now, their experiences can be shared with researchers in Spokane.

The RECOVER study has been designed with patients in mind, said Dr. Katherine Tuttle, a nephrologist and director of research at Providence Sacred Heart Medical Center.

Tuttle was part of the team that helped design the study, and she said the correct controls will be important to understanding which symptoms can be linked to a person’s COVID infection.

Also important, she said, is putting long COVID patients and their experience at the center of the study.

“Patients are the experts in their disease, and they should not be passive advisers,” Tuttle said. “They should be partners in the research and help us answer the questions.”

After more than two years of the pandemic, long COVID is finally being discussed at the national level.

President Joe Biden released a memo this week, directing federal health agencies to prioritize planning and reporting about long COVID in the country. Tuttle said she hopes this means there will be a substantial increase in support for developing more long COVID clinics with the aim of research being done where patients are treated.

Dr. Jim Heath, president of the Institute for Systems Biology and the director of the consortium, said the study is enrolling patients who recently had COVID along with those who continue to exhibit COVID symptoms long after their initial diagnosis, and patients who tested positive but might not have those symptoms. The study will also seek to enroll some people who have not tested positive for the virus as controls.

Patients in the study will participate for four years, and initial enrollment will place patients in different tiers, based on the severity of symptoms and side effects. In Spokane, patients enrolled through Sacred Heart will likely be contacted about every three months, Tuttle said. Some visits can be done remotely while other visits may require blood draws, physical evaluations and additional scans.

Through wide-scale observation and the large amount of patients enrolled in the study, researchers hope to sort out what conditions might predict whether a person gets long COVID as well as which symptoms are most commonly linked to the virus.

Heath said the goal is to go beyond that, however, to understand what mechanisms are at play and hopefully test and develop treatments to help suffering patients.

“The hope is we’ll also get mechanistic information about why these conditions are appearing and how to reverse them,” he said.

While there are no drugs or treatments being tested through the consortium, Heath said the expectation is that there will be eventually.

The Sacred Heart site will take anyone who is eligible, regardless of whether they are a Providence patient. Tuttle said patients from North Idaho, Montana, Eastern Washington and Oregon can participate as well.

Tuttle, whose specialty is kidney medicine, knows firsthand how COVID affected kidney function. She remembers the team using the last dialysis machine at Sacred Heart in the midst of a particularly bad COVID wave to keep a patient’s kidneys functioning while they were being ventilated.

She warned that the impacts of long COVID might not be obvious to everyone, and some organs failing are potentially “silent killers” in the background if they are not detected early.

“If somebody has had COVID, and they’re not feeling right, I would recommend that they see their primary care provider and have a physical and some lab work done,” Tuttle said. “Kidney failure doesn’t make you feel bad until you’re nearly dead.”

Long COVID can impact anyone who tested positive for the virus, including those who had relatively mild symptoms, Tuttle said.

“People who think they had a cold or even had COVID twice and it was no big deal, they could still get long COVID,” she said.

To see if you are eligible for the RECOVER consortium study, visit isbscience.org/pnwrecover and if you are eligible, you can fill out this survey to indicate your interest in participating.