‘Everything Is Fair Game in Long COVID Land:’ A Look into BMC’s ReCOVer Long COVID Clinic, Four Years In

Since Boston Medical Center launched the ReCOVer Long COVID Clinic in 2021, significant progress has been made toward understanding long COVID and how to effectively treat it. For one, there is now a formal definition. According to the CDC, long COVID is “a chronic condition that occurs after SARS-CoV-2 infection and is present for at least three months. Long COVID includes a wide range of symptoms or conditions that may improve, worsen, or be ongoing.”  

Jai G. Marathe, MBBS, director of the ReCOVer Long COVID Clinic, admits she has a “love-hate” relationship with the CDC’s definition. She loves that it captures the syndrome’s constellation of symptoms, which can include brain fog, post-exertional malaise, chest pain, shortness of breath, and many others. She appreciates its authenticity, noting that the CDC engaged with those with lived experience as well as experts in the field to arrive at their definition. But she prefers the WHO’s wording, which adds that for persistent symptoms to be considered long COVID, they need to have “no other explanation.” 

This nuance is important, she says, because it prompts patients to undergo important clinical evaluations either by their primary care physician (PCP) or by a long COVID specialist, to rule out other diseases.  

The art of caring for long COVID

Despite there being a formal CDC definition, Americans experiencing long COVID symptoms continue to feel dismissed by their communities, providers, and insurance companies, driving them to seek specialized care. In 2024 alone, BMC welcomed 1,000 long COVID patients — from the Boston area, across New England, and as far away as North Carolina. 

“It humbles me that, despite all their health limitations, our patients travel so far to come and see us,” says infectious disease specialist Faye F. Huang, NP. “They have had no choice but to be very strong advocates for themselves in a world where most people don’t understand long COVID.” 

“The art of caring for long COVID patients starts first with listening to them and then believing them.”

 Faye F. Huang, NP, infectious disease specialist

Whether referred by their PCP or self-referred, every new patient at BMC’s long COVID clinic starts by sitting down with Huang for an hour-long intake appointment. “The art of caring for long COVID patients starts first with listening to them and then believing them,” says Huang.  

During her detailed intake, which is typically virtual, Huang reviews and assesses each patient’s physical and psychosocial health and their full range of symptoms before referring them to neurology, pulmonology, cardiology, and speech-language pathology. 

“I tell them that long COVID is like the marathon you never chose to run. You don’t know where the finish line is, or even what shoes you need to wear. My role is to coach them — to walk beside them — and help them find a way forward.” 

Comprehensive, multidisciplinary care 

The ReCOVer Long COVID Clinic takes a comprehensive, multidisciplinary approach. Patients may undergo neurocognitive, basic lung function, or advanced cardiopulmonary exercise testing and be treated with medications, lifestyle changes, targeted exercise programs, and pacing. Pacing is a key element of care for another condition, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and after learning that there is a big overlap in symptoms between the two conditions, they started implementing that idea from ME/CFS literature. 

“Through our program, we are not offering a specific procedure or high-tech treatment, but we are comprehensively understanding how it affects people’s lives and offering some strategies to help them try to improve over time,” explains cardiologist Naomi M. Hamburg, MD, MS. 

Hamburg notes that including cardiology in their multidisciplinary model may explain their high patient volume, as most other programs focus on pulmonology or neurology. “Long COVID is defined by a constellation of symptoms, and the symptom patterns are different in different people,” she says. “It’s not exactly a heart disease, but there are a lot of heart-related symptoms, so people really want to be seen by a cardiologist.” 

“Millions of people are experiencing lingering symptoms with no other explanation. This opens the gates for improving our knowledge and investing resources in studying long COVID more closely, which could also help us understand other chronic illnesses. I think ultimately knowledge is power in and of itself, but when it is translated to helping people who are struggling, it improves lives.”

Jai G. Marathe, MBBS, director of the ReCOVer Long COVID Clinic

One of the program’s most distinctive tools is advanced cardiopulmonary exercise testing. She notes that even though it’s a diagnostic test, not a treatment, it can still be very helpful for people who come to the clinic. 

“Patients often say, ‘I can’t do anything I used to.’ This testing puts numbers to their limitations, which quantifies and validates what they’re experiencing,” Hamburg says. 

Another unique feature is the program’s breathing dysfunction program, run by speech therapist Hadas Golan, MS, CCC-SLP. “Our patients have noticed tremendous benefit from participating in that clinic,” adds Marathe.  

Before COVID-19, Shauna Moosa could do 3-mile walks with her dog and workouts with ease. After a breakthrough infection, she lost energy, felt stranded by brain fog, and even lost her speech. At BMC’s ReCOVer Clinic, she began to find her way back. “Meeting Hadas was definitely a turning point for me,” says Shauna. “I’ve had slow but steady improvement, retraining my brain and body to breathe correctly.” 

“Even though there are not a lot of proven therapies, our patients are getting careful longitudinal care.” Huang adds that their program recognizes that the mind-body connection is strong in any illness and must always be addressed. “No matter what people’s symptoms are, stress, fatigue, depression, and anxiety don’t cause long COVID, but they fuel it,” she says. 

Towards a more defined care pathway

Long COVID remains an emerging field with many unanswered questions. Until scientists discover more, the best approach to treatment will continue to be comprehensive and multidisciplinary, but somewhat ambiguous. 

“We still don’t really know what causes long COVID,” says Huang. “The only way we’re going to get better at treating it is by seeing more patients. We’re learning as we go, and we’ve learned that our patients are our best teachers. They’ve taught us that everything is fair game in long COVID land. We’re learning together.”  

Marathe adds that once the research has progressed and there are more proven therapies, they will be able to generate a robust pathway for patients to follow. BMC is currently involved in multiple research projects to move the needle forward. 

The ReCOVer Long COVID Clinic is a site for the NIH-funded RECOVER initiative, the largest U.S. effort to study long COVID. 
 
“There’s an observational component looking at different symptom clusters, and there are treatment trials as part of it,” Hamburg explains. Marathe adds that Recover TLC has a portal where patients can submit ideas themselves for medications that should be studied to treat long COVID. “We are learning from them just as much as we are imparting knowledge,” she says. “It’s a true partnership, which I hadn’t seen before long COVID, which is very rewarding to me.” 

As part of the NIH-funded Massachusetts Community Engagement Alliance (MA-CEAL) Against COVID-19 Disparities, led by infectious disease specialist Benjamin P. Linas, MD, Marathe spearheaded a project to train long COVID ambassadors in underserved communities. The initiative aimed to equip local leaders — particularly in non-English-speaking populations — with the knowledge to recognize long COVID symptoms and help community members advocate for care. She is now building on that work by seeking funding to develop bite-sized teaching modules that will help clinicians more consistently identify and manage long COVID. 

The team is hopeful that through these and other research projects, they will make discoveries that have far-reaching benefits. 

“Millions of people are experiencing lingering symptoms with no other explanation,” Marathe says. “This opens the gates for improving our knowledge and investing resources in studying long COVID more closely, which could also help us understand other chronic illnesses. I think ultimately knowledge is power in and of itself, but when it is translated to helping people who are struggling, it improves lives.”