Post-COVID Programs Offer Comprehensive Neurology Care for Long COVID

Among the multi-system effects observed in patients with COVID-19, neurologic manifestations have been noted in more than 82% of those hospitalized with acute infection. 1 Headache, myalgias, dizziness, anosmia, and dysgeusia comprise the majority of neurologic symptoms associated with COVID-19.Following SARS-CoV-2 infection, some people can experience its long-term effects, or long COVID, weeks, months, or even years after.

Up to one-third of patients with long COVID experience persistent neurologic symptoms.1 Although the pathophysiology underlying long COVID symptoms has yet to be elucidated, proposed mechanisms include “immune dysregulation, autoimmunity, persistent viral reservoirs, and microvascular dysfunction,” as noted in a recent review published in Seminars in Neurology.2

In a 2023 study published in the Annals of Neurology, researchers reported on the findings of the first 600 patients treated at Northwestern’s Neuro-COVID-19 clinic; 100 of these participants had been hospitalized during acute infection.3 The researchers found that 91% of patients reported more than 4 neurologic symptoms an average of 6.8 months following symptom onset, most commonly nonspecific cognitive complaints such as “brain fog” (81.2%), headache (70.3%), anosmia (55.7%), dysgeusia (54.5%), dizziness (49.5%), and myalgia (47.5%). Many patients also experienced post-COVID fatigue (85.8%) and other non-neurologic symptoms, including depression/anxiety (69.3%) and insomnia (57.0%).3

To adequately support patients with long COVID, many institutions across the United States have created post-COVID clinics that provide specialized, multidisciplinary care to address the wide-ranging long-term effects of the illness. Some post-COVID care programs address the myriad long-term effects associated with COVID-19, while others, including the Neuro-COVID-19 clinic at Northwestern University Memorial Hospital in Chicago, Illinois, specialize in treating patients with ongoing neurologic dysfunction long after recovering from acute infection.

Duration and frequency of treatment in a post-COVID care program will vary depending on the patient’s functional impairment, the capacity of the program, and the availability of resources outside of the program …

To discuss the management of neurologic symptoms in post-COVID care programs, we interviewed the following experts who work with patients in the post-COVID centers at their respective institutions:

  • Igor J. Koralnik, MD, professor of neurology and chief of neuro-infectious disease and global neurology at Northwestern University Feinberg School of Medicine in Chicago, Illinois, fellow of the American Academy of Neurology, and co-author of the previously mentioned 2023 Annals of Neurology
  • Neil A. Busis, MD, clinical professor in the department of neurology at NYU Grossman School of Medicine in New York, New York
  • Trisham Gyang, MD, clinical assistant professor of neurology at The Ohio State University Wexner Medical Center in Columbus, Ohio 
  • Jillian R. Oft, MD, infectious disease specialist at Cedars-Sinai Medical Center in Los Angeles, California
  • Jacqueline H. Becker, PhD, clinical neuropsychologist, health services researcher, and assistant professor in the division of general internal medicine at Icahn School of Medicine at Mount Sinai in New York, New York

Patients with long COVID experience a range of neurologic symptoms including cognitive issues, headaches, neuropathic pain, and post-COVID fatigue, which are general, non-specific symptoms.

How can physicians triage patients that warrant referral to a post-COVID care program vs other forms of management or treatment?

Dr Koralnik:We have now seen 2,000 patients in my Neuro-COVID-19 clinic. Patients are seen in a 1-hour visit, and a differential diagnosis is established to determine if symptoms are related to long COVID, followed by investigations and treatment planning.

Dr Gyang: Most neurologic symptoms associated with long COVID are non-specific, and most patients do not have abnormal findings on exam. Referrals to post-COVID programs are ideal for patients with persistent symptoms that do not improve with rest and lifestyle measures, patients with underlying neurologic conditions that worsen after COVID infection without return to baseline, and patients with neurologic deficits on exam.  

Dr Oft: Physicians seeing patients with neurologic complaints should approach the evaluation as they would with any other patient. This includes particular attention to any alarm signs, such as sudden “thunderclap” headache or focal neurologic deficits, and common causes of these symptoms, such as morning headache in association with untreated sleep apnea or neuropathic pain from diabetic neuropathy. These are recognized in both the general population and the long COVID population.

Many of these symptoms are managed in similar ways for the long COVID population as for the general population and can be successfully managed by any physician. Physicians may consider referral to a post-COVID care program for patients with significant functional impairment and persistent or worsening symptoms despite reasonable attempts at evaluation and management. Physicians and patients should also be aware of the increasing number of remote resources that are available for patients and providers who are not in close proximity to a post-COVID referral center. 

A multidisciplinary approach is essential in the management of long COVID.

When managing neurologic conditions, specifically, what other interdisciplinary teams are woven into patient care?

Dr Koralnik: We have created a Comprehensive COVID Center at Northwestern Medicine with 12 specialty clinics for the total care of patients with long COVID, which includes pulmonology, cardiology, hematology, psychiatry, and other specialties.

Dr Busis: Patients withlong COVID can suffer from a variety of neurologic symptoms along with symptoms in a variety of other organ systems including the heart, lungs, immune system, pancreas, gastrointestinal tract, kidneys, spleen, liver, blood vessels, and reproductive system.4 As a result, patients can experience anxiety, stress, and depression because these symptoms have profound effects on their work and home life.

Post-COVID programs will assemble teams appropriate to address the individual patient’s constellation of symptoms. These can consist of physicians in certain specialties, advanced practice providers such as nurse practitioners and physician assistants, as well as physical, occupational, speech, and behavioral therapists and others.

Dr Gyang: Multidisciplinary management of patients with long COVID most often involves rehabilitation services including physical, occupation, and speech therapy. For mood and cognitive symptoms, psychotherapy and cognitive therapy may be useful. In some cases, it may be helpful to refer the patient to another medical specialty like rheumatology or cardiology, for example, depending on the presentation.  

Dr Becker: In addition to neurology, other teams that should be integrated include neuropsychology, psychiatry, and rehabilitation medicine. To that end, involving social workers and care coordinators is also essential to assist patients in navigating healthcare systems and ensuring continuity of care. Patients with long COVID are often contending with multiple medical visits, labs, exams, and referrals for their new-onset symptoms.

What does “success” look like in a post-COVID care program? How do clinicians develop individualized patient goals to help determine when a patient no longer needs subsequent care from the program?

Dr Koralnik:We provide precision medicine care tailored to each patient’s needs, as every patient is different. Success is when the patient feels 100% back to their pre-COVID baseline.

In many instances, patients must learn to adapt to their “new normal” and make accommodations in their work and family environments based on their persistent health issues. We have started a monthly patient support group on Zoom that has been very successful.

Dr Oft: Success in a post-COVID care program is the same as any clinical program. A productive therapeutic relationship combines the goals and values of the individual patient with the best available scientific evidence. Patients should feel heard, gain a better understanding of their condition, and be empowered with knowledge and therapeutics to move toward rehabilitation.

A successful program would also see its physicians becoming more knowledgeable and efficient in the diagnosis and management of post-COVID conditions and working as a collegial team to share evidence-based understanding and experience. 

Developing individualized patient goals is a key component of success. Duration and frequency of treatment in a post-COVID care program will vary depending on the patient’s functional impairment, the capacity of the program, and the availability of resources outside of the program, including primary care and rehabilitation services.

There is a growing number of potential treatment options for patients with long COVID.

What are some lifestyle change recommendations adjunctive to pharmacotherapies that have been successful in this population?

Dr Oft: Lifestyle recommendations for patients with long-COVID are similar to any person looking to enhance general health, with added emphasis on getting adequate rest and energy conservation strategies. Specific energy conservation techniques for managing fatigue have been published by the American Academy of Physical Medicine and Rehabilitation.5 These techniques include planning out activities, learning to adequately pace oneself, prioritizing activities of high importance, and optimizing positioning when conducting tasks to conserve energy. 

[While these recommendations were published before the COVID-19 pandemic, such techniques have been deemed applicable to individuals with post-COVID fatigue.6]

All patients are recommended to optimize sleep hygiene and maintain a healthy diet and adequate hydration. Although no specific diet has been shown to be better for all patients, many do find that symptoms are responsive to adjustments in their diet. Physical activity is beneficial, and the type and intensity of activity or exercise will vary between patients. Finally, stress management and attention to mental health are key components of successful rehabilitation for patients living with long COVID. 

Dr Becker: Research is still underway with potential treatment options for patients with long COVID. In the meantime, with few exceptions — such as vigorous exercise4 —the same lifestyle modifications apply to this population. In addition to the importance of lifestyle approaches to optimize general health, given the hypothesis that inflammation and/or vascular dysfunction may underly long COVID, it may also be prudent for patients to reduce inflammation in the body, eat a heart-healthy anti-inflammatory diet, and abstain from alcohol and other substances.

Editor’s note: This Q&A was edited for clarity and length.

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