These Physicians Are on the Long-COVID Front Lines

Physical medicine and rehabilitation (PM&R) specialists have been on the front lines of treating the lingering effects of COVID-19 infection, so it’s fitting that the specialty has started to roll out clinical guidance and tracking for “long COVID.”

In August, the American Academy of Physical Medicine & Rehabilitation (AAPM&R) issued its first guidance on Post-Acute Sequelae of SARS-CoV-2 infection (PASC), or long COVID, focusing on fatigue. The association has several other related guidances in the works from the organization’s PASC Collaborative, with representation from PM&R, primary care and population health, and pulmonary and critical care.

AAPM&R also recently released a tracker that estimates PASC cases across the country to get a better handle on where resources, such as PASC treatment programs, may be needed most.

Steven Flanagan, MD, vice president of AAPM&R, answered questions from MedPage Today via email about the group’s leadership role in PASC. Flanagan is also the chair of rehabilitation medicine at New York University Grossman School of Medicine and the medical director of Rusk Rehabilitation at NYU-Langone Health in New York City.

Following is an edited transcript of those questions and answers.

What do we know about PASC at this point in time?

Flanagan: According to two publications from JAMA, 10% to 30% of individuals who had COVID-19 reported at least one persistent symptom up to 6 months after the virus left their bodies. That means an estimated 3 to 10 million Americans are experiencing symptoms of long COVID.

These symptoms are varied and ongoing, and include neurological challenges, cognitive problems such as brain fog, shortness of breath, fatigue, musculoskeletal pain, and mobility issues.

At this point in time, research is ongoing to understand long COVID and recovery. AAPM&R’s goal in creating a national call to action is to help long COVID patients reach their highest levels of recovery, and the dashboard we created illustrates the size and location of patients based on the best estimates for this population.

Given the size of this population and urgent needs, we are creating guidance statements based on multidisciplinary input to support comprehensive clinical treatment of patients with long COVID symptoms.

Tell us about the guidance focused on fatigue.

Flanagan: In March 2021, AAPM&R launched our multi-disciplinary PASC collaborative of experts, which consists of PM&R physicians and a diverse group of clinicians from across the U.S. with extensive experience leading COVID-19 recovery clinics.

PM&R physicians are leaders in directing rehabilitation and recovery, and we’re medical experts in value-based evaluation, diagnosis, and management of neuromusculoskeletal and disabling conditions. This makes the field of PM&R uniquely qualified to help guide the multidisciplinary planning effort needed to address the rehabilitation and care needs of this rapidly growing patient population.

The goals of this collaborative are to create clinical guidance as well as education and resources to improve experience-of-care and health equity.

Throughout the summer, our collaborative, as well as patients and researchers living with long COVID, came together to create our fatigue guidance statement. In early August, we released this guidance in our PM&R Journal, which is the first in a series of peer-reviewed guidance statements to help physicians make clinical decisions concerning treatment of long COVID.

Fatigue is known to be one of the most common symptoms of long COVID that can significantly impact a patient’s well-being and quality of life. Patients are often presenting with long-lasting and debilitating fatigue during their recovery, and while fatigue likely improves over time, it can persist beyond 6 months.

The pathophysiology causing fatigue after COVID-19 still warrants ongoing detailed research to better understand this constellation of symptoms, while acknowledging the cause of fatigue is likely multifactorial and may be specific to the individual.

Our guidance statement explains how to identify and diagnose fatigue in patients with PASC, analyze PASC fatigue presentation and assessment recommendations, differentiate and apply PASC fatigue treatment recommendations, identify health equity considerations and examples in PASC fatigue, as well as summarize the future directions in assessing and treating PASC-related fatigue.

As with any treatment plan, clinicians treating patients with PASC-related fatigue are encouraged to discuss the unknowns of PASC treatments, as well as the pros and cons of any therapeutic approach. The recommendations outlined in the guidance are based on the experience of the PASC Collaborative clinics and have helped to alleviate symptoms in cases in which specific contributing etiologies have not been identified or, despite being addressed, symptoms persist. As treatment efficacy of therapeutic options emerges, these recommendations will be reviewed and revised on a periodic basis.

As the Delta variant spreads, understanding how to identify and treat PASC-related fatigue is becoming more crucial. We’re hopeful that this guidance will make a significant difference for patients with long COVID who are experiencing fatigue.

What additional PASC guidelines are in the works?

Flanagan: AAPM&R’s multi-disciplinary PASC Collaborative has several long COVID guidance statements in the works, including cognitive impairment, breathing discomfort, cardiac and autonomic issues, neuropsychology, and pediatrics, which will be published on a rolling basis. Due to rapidly evolving knowledge on long COVID, these guidance statements will be reviewed and revised as new evidence emerges.

Along with guidance statement development, our collaborative is also focused on developing long COVID clinical infrastructure guidance. An estimated 80+ clinics have been created, and our Collaborative estimates that each can only handle 10 to 20 new patients per week, on average, compared to the millions of people who have symptoms.

The need for infrastructure guidance is critical to our Collaborative’s goals and will support the Academy’s overall call for a national plan, which emphasizes the need for research to advance the medical understanding of long COVID, equitable access to care for patients, and resources to build necessary infrastructure. The infrastructure needs to include resources to build necessary rehabilitation care infrastructure and funding to meet the crisis on national and local levels, as well as appropriate reimbursement for care.

Tell us about the decision to launch the PASC dashboard, and about the goals of the project.

Flanagan: It is crucial that we understand how many people have long COVID and where those populations are located to ensure we have the appropriate resources and infrastructure to support them, as well as equitable access to care, as prioritized in our call to action. Ultimately, our goal is to ensure that we, as a country, help long COVID patients reach their highest levels of recovery.

This is why we decided to launch our dashboard, which is the first of its kind that shows how many millions of Americans are estimated to be experiencing long COVID symptoms by state, county, and nationally.

The dashboard is based on data from Johns Hopkins University Center for Systems Science and Engineering (CSSE) COVID-19 data and the U.S. census, and includes state and county level statistics and trends over time. Our dashboard also has options for estimating the number of long COVID cases based on different assumptions and percentages.

It’s such an important tool to help estimate and assess the growing population of people with long COVID to help hospitals, clinics, and healthcare professionals across the country prepare and plan for their care.

PASC has received more attention than any other post-viral illness. Will the focus on long COVID have implications for related illnesses, such as myalgic encephalomyelitis/chronic fatigue syndrome, as well?

In our fatigue guidance statement, we reiterate that long COVID includes individuals with many different types of fatigue and is a much broader definition without clear diagnostic criteria.

While certainly there are going to be some individuals with long COVID-related fatigue who go on to develop chronic fatigue syndrome, that percentage is unknown. We need more data to understand if and in which individuals long COVID-related fatigue is a manifestation of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and in which individuals long COVID-related fatigue represents a distinct process.

There are also lessons to be learned from past pandemics. Few people likely remember the history or impact of polio. The first polio epidemic in the U.S. occurred in 1895, but it was not until 1908 that the poliovirus was discovered. In the early 1900s, epidemics would regularly hit heavily populated cities during the summer. In the 1940s and 1950s, the disease killed or paralyzed about 500,000 people around the world every year.

PM&R physicians were instrumental in structuring comprehensive rehabilitation programs for polio survivors to help them advance their function and quality of life. Some of those patients are still being treated today by AAPM&R members.

At the start of the COVID pandemic last year, the media and health officials reminded us about the 1918 flu pandemic in which about 500 million people — or one-third of the world’s population at the time — were infected. The number of deaths was estimated to be at least 50 million worldwide, with about 675,000 occurring in the U.S., according to the CDC.

There was also the 19th century Russian flu, which killed about 1 million people worldwide, out of a population of about 1.5 billion. Those who recovered from these infectious diseases suffered long-term health issues, and we weren’t prepared to treat these patients as they continued their recovery. Had we been more aware of the history of these conditions, we’d be better prepared to deal with what we are facing now.

While we are still struggling to cope with COVID-19, the U.S. has surpassed 635,000 deaths from the disease. It is not too soon to remember and apply the lessons to long COVID that we should have learned from the pandemic. If we act now and create a comprehensive national crisis management plan, there is a chance we can avoid repeating the mistakes that helped create and prolong the coronavirus crisis.