Explore the actively evolving clinical landscape of Long COVID as we discuss epidemiology, pathogenesis, manifestations, and patient-centered management options including the role of a dedicated Long COVID clinic. Listen as our expert guest Dr. Monica Verduzco-Gutierrez @MVGutierrezMD (Long School of Medicine at UT Health, San Antonio) helps us navigate this rapidly emerging syndrome. This episode will empower you to provide evidence based, patient-centered care for this challenging facet of the ongoing COVID-19 pandemic. We explore the manifestations including fatigue, dyspnea, psychiatric symptoms, and other neurologic effects. We also examine the emergence of dedicated Long COVID clinics and the imperative of interdisciplinary care.
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“Long COVID” is the syndrome characterized by varied persistent symptoms after an initial COVID-19 infection. Different terminology and definitions currently exist. The CDC defines “Post-COVID Conditions” as an array of symptoms four or more weeks after being infected with COVID-19. In February 2021, the NIH announced the name PASC (Post-Acute Sequelae of SARS-CoV-2). In October 2021, the WHO released the first official definition of post COVID-19 condition, which includes the stipulation that these are symptoms that occur after confirmed or presumed COVID-19 infection. The definitions vary slightly in terms of time requirement for symptom onset and duration, but ultimately one should take a patient-centered approach to the fact that patients have new or persistent symptoms after a COVID-19 diagnosis.
The term “COVID Long Hauler” was an early patient-driven term, but this has fallen out of favor for many patients, per Dr. Verduzco-Gutierrez.
We do not have a definitive understanding of the pathophysiology of Long COVID yet, but purported mechanisms focus on the role of the individual immune response (Nalbandian 2021). This includes the presence of inflammation and post-inflammatory cytokines as well as the creation of autoantibodies. Research about the pathophysiology looks at the role of the spike protein and ACE receptor, as well as explores questions about the potential for persistent viral presence.
Post-viral sequelae exist with other viral infections (including Ebola, MERS, SARS-CoV-1, West Nile Virus). Is post-COVID “just another” post-viral syndrome that we happen to be seeing on a very large scale right one given the large number of COVID-19 cases? Potentially!
Is there an emerging controversy that Long COVID is more of a biopsychosocial issue (Sykes 2021) versus a biological phenomenon (Phillips 2021)? As with other poorly understood syndromes, patients with Long COVID may feel that they are being gaslit, stigmatized, and told “it’s all in your head” especially if available tests are negative (Verduzco-Gutierrez 2021). As Dr. Verduzco-Gutierrez says, we might not have the right tests YET. The absence of objective findings or positive results on laboratory or imaging studies must not negate patients’ symptoms, and we need to look beyond the traditional tests in our wheelhouse and think outside the box by listening to our patients’ symptoms.
Long COVID appears to disproportionately affect women in their 40s (Logue 2021, Sudre 2021), in comparison to older men being at risk for worse initial infection. Think of the prevalence of other autoimmune diseases in women in their 40-50s! The woman-predominance risks exacerbating the bias and misogyny affecting our ability to diagnose challenging symptoms –and we need to be prepared to LISTEN to our patients.
Update: The original version of this episode contained a brief, but incorrect characterization of mast cell disorders that was subsequently removed after feedback from our allergy/immunology colleagues. We apologize for this inconvenience and thank our colleagues for their peer review. -The Curbsiders team
Long COVID may occur in 10-30% of patients who had COVID-19 (Phillips 2021, Nehme 2021). Given the number of COVID-19 cases in this country, Long COVID is being dubbed the next national health disaster (Phillips 2021) or “this generation’s polio”.
The impact of COVID-19 therapies (ex. steroids, monoclonal antibodies) on the risk of developing Long COVID is still being studied.
The work surrounding Long COVID has been highly interdisciplinary so far! Physiatry has been heavily involved (Verduzco-Gutierrez 2021). Cool history: the field of Physiatry has strong historical roots in the polio epidemic, because polio created so many people who had new disabilities. Polio hospitals became rehab hospitals once the polio vaccination was widely available.
Dr. Verduzco-Gutierrez: “[Physiatry is] good at taking care of people during epidemics, but we’re best doing it with a team approach.”
Currently most of the clinical work for Long COVID is being done at academic centers and involves multiple specialties and subspecialties–ex., physiatry, internal medicine, cardiology, infectious disease, rheumatology, physical therapy, speech therapy, occupational therapy.
Patients may have POTS-like symptoms or other signs/symptoms of autonomic instability (Blitshteyn 2021, Becker 2021). Tilt table testing may be needed after echocardiography; orthostatic vitals can also be checked in the clinic. Consider non-pharmacologic care including compression stockings, abdominal binders, small frequent meals, and proactive hydration per Dr. Dr. Verduzco-Gutierrez. Some patients might need pharmacologic therapy including beta-blockers or midodrine.
Patients with autonomic instability can have small fiber neuropathy (Thieben 2007, Gibbons 2013) (again, recall we might not have the right tests yet: EMG has lower sensitivity). Per Dr. Verduzco-Gutierrez symptoms can include tinnitus, numbness/tingling, or a sense of “internal vibration.”
Fatigue and other systemic symptoms
A phenotype of patients with Long COVID will resemble patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (Davis 2021, Wong 2021). ME/CFS patients can have significant Post-Exertional Malaise (PEM)(Davis 2021). Illness script for PEM: significant fatigue after physical or mental activity. Pacing and energy conservation is the hallmark of PEM management. Patients with Long COVID may need this type of approach rather than traditional physical therapy and exercise training (Rogers-Brown 2021). A consensus guideline on the assessment and treatment of fatigue in Long COVID was recently published (Herrera 2021).
Neurologic and psychiatric symptoms can be very common after COVID-19 (Taquet 2021). Some of the most common symptoms in Long COVID can be neurologic, including headache, “brain fog”, attentional disorders, or memory loss (Davis 2021). “Brain fog” might be how patients describe anomia (word retrieval challenges). However, anomia may be more multifactorial, with components from fatigue, inattention, and memory slips.
Pathophysiology may include disruption of the blood brain barrier, inflammation, and post-inflammatory cytokines (Moghimi 2021). Neuroinflammation causes neuropsychiatric symptoms, so analogies between Long COVID and “inflammaging” are valuable. It’s unclear if the virus itself might be found in the brain. Advanced brain imaging or advanced neuropsychiatric testing might be needed.
Apt analogies also exist between the neurologic manifestations of Long COVID and traumatic brain injury (TBI), post-concussive, and post-stroke syndromes. Focus on what you can optimize or treat. Example, optimize nutrition, exercise/activity, and sleep. Treat headaches. Consider vestibular rehab for dizziness. Consider speech therapy for cognitive support tools. Provide counseling and validate that cognitive tasks can be more fatiguing than physical activity after a brain injury–including potentially triggering PEM. Patients may need support and accommodations to return to work, including a graduated return to work program.
Cranial nerve 1 is the most common cranial nerve injured in TBIs (Fernandez Coello 2010)! Loss of smell/taste can persist for months (Carvalho-Schneider 2020); it can also progress to altered smell/taste. Treatment options include intranasal steroids and smell training. Otolaryngologists or certain non-medical professionals, like sommeliers, may have a role here. Consider the risk of malnutrition if smell/taste changes persist. Provide counseling and tips for personal safety, including working smoke detectors.
Dr. Verduzco-Gutierrez: “These clinic visits take time.”
Depending on the Long COVID clinic, referral might be through primary care and/or self-referral. Ideally, Long COVID care will be interdisciplinary (Verduzco-Gutierrez 2021).
The challenge of living with Long COVID may also be compounded by the other stresses, collective trauma, anxiety, and PTSD of living through a global pandemic for nearly two years. Listening, education, validation, and reassurance are crucial facets of Long COVID care. Even giving someone’s symptoms a name/diagnostic label may go a long way. Utilize PHQ-2 or PHQ-9 screening, and refer to higher level psychiatric support when needed.
Patients with Long COVID have been instrumental in the launch of Long COVID clinics and active research.
The impact of Long COVID in terms of disability may be very large because of its prevalence in working-age people (Davis 2021). In the United States, Long COVID is a recognized disability under the ADA, but that is still being worked out under SSI. Pacing and energy conservation are just as important for cognitive activity as it is for physical activity. Make an effort to fill out forms for work and disability applications!
Be cognizant of overlap between Long COVID and social determinants of health or health inequities (Berger 2021, Verduzco-Gutierrez 2021). For example, some people may not have work that they can do from home or do while seated.
Vaccines HELP! Vaccination may not be completely protective against the development of Long COVID, BUT vaccines may reduce the risk of getting Long COVID after a COVID infection by half (Ledford 2021). The majority of patients with Long COVID who get vaccinated also report an improvement in their symptoms (LongCovidSOS 2021). While a small percentage of patients with Long COVID will feel worse after vaccination, overall, the numbers favor vaccination, with the majority experiencing improved symptoms (LongCovidSOS 2021). Vaccination will lower the rate of a repeat COVID-19 infection after prior infection (super immunity).
PASC: post-acute sequelae of SARS-CoV-2 infection
PICS: post-intensive care syndrome
POTS: postural orthostatic tachycardia syndrome
PEM: post-exertional malaise
ME: myalgic encephalomyelitis
CFS: chronic fatigue syndrome
TBI: traumatic brain injury
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Listeners will explain the available data regarding the pathogenesis, epidemiology, manifestations, and management of Long COVID, gaining valuable insights to this rapidly emerging clinical syndrome that can dramatically affect survivors of COVID-19.
After listening to this episode listeners will…
Dr. Verduzco-Gutierrez reports no relevant financial disclosures. The Curbsiders report no relevant financial disclosures.
O’Glasser AY, Verduzco-Gutierrez M, Williams PN, Watto MF. “#315 Long COVID”. The Curbsiders Internal Medicine Podcast. http://thecurbsiders.com/episode-list. Final publishing date January 10th, 2022.
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