National Academies of Science, Engineering, and Medicine

My thoughts for the committee Examining the Definition of Long Covid*

It is a privilege to address the NASEM Committee on Examining the Definition for Long COVID today. I am a medical anthropologist and professor at Georgetown University. For the past two years I have engaged with hundreds of people living with Long Covid, family members and clinicians caring for patients with Long Covid, or scientists investigating Long Covid from various points of view. I have spoken with some of you, in fact, and find interviewing scholars or practitioners whose lives have been upended by COVID to be the most instructive. I have also learned a great deal by attending meetings here at the National Academies as well as the NIH on Long Covid and ME/CFS. I explain my perspective in part because my words today come from this bottom-up perspective rather than a clinical of biological perspective.

Before I discuss diagnostic implementation, let me address how Long Covid is a heterogeneous construct. This matters for several reasons that I will address, but first it’s important to identify the four major clusters of Long Covid symptoms, which frequently overlap and co-occur.

First, there are the patients who suffer severe acute infection with prolonged hospitalization or intensive care unit stays. These are the patients that most closely align with the condition known as post-intensive care syndrome. Their condition, in many cases, is not only physical but also emotional in part due to medical trauma and social dislocation. For instance, I spoke with a nurse who was infected at work and hospitalized in a coma and on a respiratory for more than a month. She lost her job, home, and life to her hospitalization and disabling physical morbidity. She also experiences panic attacks linked to traumatic memory and depression associated with losing a life she worked so hard to build.

Second, there are those who present with severe allergy. For instance, I have a student at Georgetown who described how intense her allergic reactions have become since infection. Some people are diagnosed with mast cell activation syndrome, where their body responds in an immense way to their environment, foods, and other things that may have been slightly triggered before COVID but now are highly sensitive.  However, many patients with MCAS also present with other severe and disabling conditions.

Third, vascular conditions are common and overlapping with many people living with Long Covid. Perhaps the largest category of people with vascular damage has had no cardiac events or pre-existing conditions; rather, they present with chest pain, tachycardia, vascular damage, and POTS with no other known causes. Others present with more visible conditions like heart attacks, strokes, a-fib, and other cardiac irregularities; in other ways they are hidden behind pre-existing diagnoses like diabetes, hypertension, and heart disease. The role of previous diagnoses is important to understand because, particularly when clinicians are caring for publicly insured patients, they are more likely to treat on the basis of preexisting diagnoses because care is easier to administer.

Finally, nearly half of Long Covid patients present with autonomic nervous system dysregulation and neurological conditions with disabling symptoms that align closely with ME/CFS or fibromyalgia; many people who develop moderate to severe Long Covid have pre-existing auto-immune conditions or develop them through the course of the illness. Many of the most severely disabled patients also have mast cell activation, neurological problems, post-exertional malaise, and a whole slew of symptoms that emerge and impoverish people’s health.  While nearly a quarter are bed-bound, many patients have lost jobs, homes, family, their children, and other things that bring them joy and security to this illness. Most become completely exhausted by routine tasks, such as taking a shower, climbing the stairs, and visiting the doctor. Some cannot sit in the sunlight because it causes extreme migraines. One woman lost her home and lived in a tent in a national park for two years because the government had no program in place to care for her. Certainly, this is something the committee is very well aware of.

In what follows, I will speak to implementation of care. I have spoken to more than fifty researchers and practitioners, with about one-third reporting a previous Long Covid diagnosis, thereby exhibiting a personal as well as clinical experience with the condition. For what follows, I draw on several of these interviews as well as particular conversations Dr. Ali Christy, Dr. Oni Blackstock, Dr. Jodi Roque, Dr. Alba Azola, and Dr. Rebecca Wilson Zingg, including a neurologist, internist, family medicine doctor, physiatrist, and osteopath, respectively.

The first issue is taking patients seriously. Very few people at this point who have described a supportive clinical experience through diagnosis, treatment, and recovery. This is particularly true for children, people of color, transpeople, and those already living with disabilities whose experiences have worsened with Long Covid. In particular, Black and Brown patients face extraordinary distrust and disbelief when they seek care, particularly when their clinician doesn’t look like them. This is why in longitudinal studies we have found that Latinx and Black Americans have higher rates of biological dysregulation due to COVID-19, yet there is more representation in media and clinical care among white Americans.

Part of the dismissal of patients with complex and chronic conditions stem from the biomedical model itself.  Long Covid is tricky because it’s difficult to clearly delineate what stems from Long Covid from what is pre-existing. That’s why some clinicians struggle to diagnose Long Covid, and why Long Covid often becomes a default diagnosis after ruling out potential causes. Many clinicians find it’s hard to disentangle what’s from the infection and what is further dysregulation of a more established diagnosis. This matters mostly because of the way our medical system is structured.

It is well known that our health system in America is deeply unequal. It’s important to recognize how this affects those living with disabling health conditions since a COVID-19 infection. In overstretched federally qualified health centers in America, every day is an absolute scramble so covering diagnostic tests is difficult even for well understood conditions like diabetes or asthma. A Spanish Speaking clinician in a FQHC in Chicago described how fatigue and ongoing shortness of breath increased most among her patients. Some patients also had ongoing blood pressure issues or vascular effects which were not present before they had COVID. However, these medical problems are compounded by the specter of underinsurance and uninsurance. Without money, most of these patients go untreated.

One solution that has been devised is curated Long Covid Clinics. Yet, most people I have spoken to are irate about these clinics. This is not because they are a bad idea. It’s because of the way they are structured. Long Covid Clinics have primarily been set up to be switch boards. Instead of meeting one clinician who can care for the whole person, Long Covid clinics are set up to help patients manage their specialty care. Most people I’ve spoken to have sought care from two dozen doctors. In fact, Long Haulers’ most difficult activity that they have to save energy for is to see the doctors once or twice a week. In other words, the Long Covid Clinic is a misnomer; it is an effort to help provide access to needed specialist care but provides no meaningful care coordination across specialties. In short, this system is not set up for people dealing with the autonomic dysregulation that so many people with Long Covid are managing day in and day out.

What people need are holistic healers who can sit, listen, and spend time coming up with plans for navigating a new normal. This involves not only training clinicians about complex and chronic conditions, and autoimmune conditions in particular, but also matching patients living with chronic and complex conditions with clinicians who are knowledgeable and experienced caring for them. Moreover, we need to learn from the expertise of physicians treating patients living with similar syndromes before the pandemic, such as autoimmune conditions, ME/CFS, MS, and fibromyalgia—indeed, there is no need to start from scratch.

There are some good examples in biomedicine that should be emulated and amplified across all health systems. The most important element is creating clinical space for clinicians who have been trained and have experience in caring for people living with complex and chronic conditions. As a clinician specializing in complex and chronic conditions, Dr. Alba Azola, a physiatrist at Johns Hopkins University and an assistant professor of medicine, described five key elements of Long Covid care that are essential for this committee.

1.    First, people need access to specialized care prepared to meet the needs of a person living with Long Covid—this is a hurdle not only with health insurance and finding someone to believe you but also simply getting to the doctor can cause extraordinary post-exertional malaise.

2.    Second, culturally people, including healthcare workers, are not being educated about Long Covid, which is causing stigma and bias in society that makes people think their symptoms are not real. Certainly this is not a new phenomenon, as some of this stigma is historical and long associated with post-viral conditions that have no clear biological test or treatment.

3.    Third, people are more likely to be dismissed, or not ask for help from a physician, because they do not feel they are being taken seriously or they do not feel safe in medical spaces. People are less likely to feel understood or taken seriously when their background is very different from their physician. 

4.    Fourth, cultural competency needs to be understood for explaining symptoms of Long Covid. In this way, not everyone will come to the clinic with the same knowledge and the conversations people can and want to have about their symptoms and underlying causality will differ enormously. I have found that highly educated women find they are dismissed by doctors because they come to the clinical encounter with too much information while people less familiar with what is causing their symptoms may be dismissed because they are perceived to understand too little.

5.    Finally, if you don’t have context, then this person coming with a cadre of complex symptoms may sound like a hysterical crazy person. Calling people hysterical or trying to diagnose a Long Covid patient with functional neurological disorder is not only common but also demeaning in the eyes of Long Covid patients because they feel they are not believed that their health unraveled after their COVID infection.  Many patients consider such actions to be a form of medical trauma.

This requires clinical spaces that are holistic and integrative. This means there are clinicians who can work across biological and health systems. It may also require clinicians to engage in house visits for patients who suffer from post exertional malaise, or PEM, so they can save their energy for healing. This may require practitioners that are trained to implement holistic approaches for evaluating a patient and coordinating multidisciplinary care for people with Long Covid, as opposed to conventional medical subspecialists who are so narrowly focused on a certain part of the body.

Finally, to summarize what an ideal Long Covid care might look like, I will highlight five key elements.

1)    Long Covid Clinics must be people-centered where patients are considered uniquely on their own terms while also meeting the needs of the Long Covid population. This involves recognizing the social and structural factors that might affect a patient’s illness from safe housing to access to healthy foods. It may also incorporate a deeper understanding of the patient’s life history of exposure to viruses, bacteria, and trauma. For instance, in my community of global health scholars, I have met many people previously infected with dengue, schistosomiasis, or tuberculosis whose COVID-19 journeys have been particularly complicated. 

2)    Recognizing patient knowledge and multiple pathways for healing is crucial in Long Covid care. Clinicians must consider what resources patients have at their disposal, from medical or scientific training to patient advocacy groups and access to other types of healers. A common problem is conventional medicine practitioners dismissing these other sources of knowledge; instead, a more respectful dialogue is crucial for the patient and provider to work together to identify problems and solutions.

3)    Recognizing provider unfamiliarity with Long Covid or other infection-associated chronic conditions. Lack of knowledge in particular can shape and bias future clinical encounters, even with other providers through misrepresentations written into charts, referrals that shape interpretations of symptoms, and so on.

4)    Acknowledging that Long Covid demonstrates post-infection dysregulation but does not present the same in everyone. In this way, no cookie cutter approach is appropriate, although it is prudent to screen for commonly found manifestations.

5)    Providing an integrative team in one place. Clinical environments can be disabling for Long Covid patients. The optimal clinical context for a Long Covid patient would involve knowledgeable providers, including specialists, who can move in and out of a clinical room during an elongated session for a Long Covid patient. This would mean that the Long Covid patient would need to travel to the clinic or hospital fewer times. It would also require a team or collaborative care approach focused on the unique social, psychological, and physical needs of the patient.

6)    Finally, disability accommodations are crucial. The American public have the responsibility to make sure people with Long Covid have substantial financial support while they are out of work so they can rest and recover. It is crucial that no Long Covid patient is left unhoused because of their illness, and that the social safety net serves those most in need who face hunger, fear, and the deep loss due to illness.  

Thank you sincerely to the committee for inviting me to share these comments.

• Thanks to Dr. Alba Azola and Dr. Rachel Hill-Clifford for reviewing these notes and providing crucial feedback in advance of the session.