Long COVID is a heterogeneous concept. Some people develop disabling fatigue and struggle with memory loss so severely that they lose their jobs. Others experience dizziness and muscle pain, or an amplification of cardiac symptoms that send them to the clinic.
What all patients have in common is that they face a practice of biomedicine that focuses on diagnosis and clarity – a medicine that can define, diagnose, and fix. However, many people living with long COVID have a unique combination of symptoms that ebb and flow through time. Instead of fixing, they need a type of care that can help multiple systems in the body at once calm, heal, and recover.
It’s not just money but also the culture of medicine that’s impeding people’s care.
We are a clinician (Azola) and anthropologist (Mendenhall) who have been deeply invested in long COVID. As a clinician specializing in complex and chronic conditions, Dr. Alba Azola, a physiatrist at Johns Hopkins University and an assistant professor of medicine, has been caring for patients with long COVID since the beginning of the pandemic. Dr. Emily Mendenhall is a medical anthropologist who has written about COVID politics and long COVID.
Neither the cause nor the treatment for long COVID is well-understood. Nevertheless, what we do know is that complex chronic conditions require special attention. By investing in and reimagining long COVID clinics, we might be able to reimagine medicine itself.
Some of the challenges
The inequity in the American health system impedes care in immeasurable ways for people living with complex chronic conditions like long COVID. While patients need to know they are believed, they cannot heal well without health insurance in the American system. We need public funding for long COVID clinics to assist patients to overcome financial barriers to care, such as health insurance.
Biomedical education in the U.S. fails to prepare physicians to diagnose and care for patients presenting with complex chronic conditions, such as long COVID.
However, it’s not just money but also the culture of medicine that’s impeding people’s care. 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. This is particularly true among people of color; Black and Latinx Americans report more long COVID in population studies but remain underrepresented in medical and research settings. People are less likely to feel understood or taken seriously when their background is very different from their physician’s. Therefore, it’s important to cultivate safe spaces for people living with complex chronic conditions that do not exhaust or overwhelm.
Finally, because of the lack of clarity in both causes and treatments for people living with long COVID, clinicians and patients can feel frustration and loss in their communications. We have found that many clinicians are conflicted about long COVID, asking: How do we know that the intensification of symptoms is from a COVID-19 infection or simply natural progression of pre-existing health conditions? It may be that “COVID is the lighter fluid” and reflects an intensification and amplification of biological vulnerability. For some this might be the brain, gut, heart, or immune system — for many it’s a combination.
It’s important to cultivate safe spaces for people living with complex chronic conditions that do not exhaust or overwhelm.
Many clinicians struggle because they lack clinical screening tools (like blood tests) to determine what people are sick from in the first place. While there are many symptoms that patients commonly present with when they are afflicted by Long COVID, the variation physicians face from patient to patient can be confusing. The confusion is in part because biomedical education in the U.S. fails to prepare physicians to diagnose and care for patients presenting with complex chronic conditions, such as long COVID. Clinician’s diagnostic uncertainty may cause them to delay a diagnosis, or refer to a colleague they believe may be in a better position to help. However, most primary care providers have very limited time to address multisystemic symptoms, which results in referrals to multiple specialists that fragments patient care and does not provide patients with the care they need.
Many patients feel frustrated, dismissed, and alone at the end of a clinical appointment about their symptoms. The majority of these patients are women. While many patients experience at least one clinician who – often frustrated by the overwhelming constellation of symptoms and unrevealing diagnostic tests – would suggest that the symptoms are psychosomatic in nature. Most patients understand this comment to question if their illness is “real.”
What we need
To make long COVID care better for both patients and clinicians, long COVID clinics have been presented as a solution; however, our research and practice suggest that these clinics are failing patients because they are structured as switchboards. Long COVID clinics are set up to help patients manage their specialty care, which may include more than two dozen doctors. The number of referrals often cause patients to go on a wild goose chase: seeing specialist after specialist who understand one symptom but not the clustering of symptoms that make up their illness. The frequent care-seeking exhausts patients because they have to reserve energy simply for the trip to the hospital. These clinics, therefore, provide access to needed specialist care but provide no meaningful care coordination across specialties.
The optimal clinical context for a long COVID patient would involve knowledgeable providers, including specialists, who can evaluate a patient during one visit in the same physical space.
Instead, long COVID clinics must function to care for patients on their own terms. This means that issues like safe housing, transportation, access to healthy foods, and social support must be considered insurable treatments.
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 involves 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.
We also need to recognize providers’ unfamiliarity with long COVID and complex chronic conditions generally. Lack of knowledge can shape and bias future clinical encounters because the experience of not knowing what a patient is suffering from might undermine their authority and cause unease. As a result, a physician might misrepresent a patient’s illness by writing an erroneous diagnosis into charts. Many patients, particularly women, are given a diagnosis of Functional Neurological Disorder, for example, that sets back their care months, if not years, particularly when their condition is associated with a virus or bacterial infection. The lack of biological verifiability of a health condition further complicates a patient’s ability to access good health care.
For these reasons, physicians providing care at long COVID clinics should develop a basic understanding of how to identify and manage common co-occurring conditions with long COVID. Building this knowledge can minimize the number of referrals to specialists that patients must endure.
Reimagining long COVID clinics, therefore, involves not only training clinicians about what complex chronic conditions are but also matching patients with clinicians who are knowledgeable and experienced caring for them.
What we need for long COVID patients is clinical care that brings together an integrative team in one place. The optimal clinical context for a long COVID patient would involve knowledgeable providers, including specialists, who can evaluate a patient during one visit in the same physical space. This type of multi-specialty clinic 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.
Alternatively, long COVID patients would benefit from in house visits so that they can save their energy for healing.
Long COVID clinics also need holistic and integrative clinicians who can work across biological and health systems to care for people with complex chronic conditions. Creating a clinic where multiple specialists work collaboratively may require recruitment of a different type of practitioner who is comfortable working with others outside their specialty. For example, practitioners who are trained to implement holistic approaches for evaluating a patient may be more inclined to work in a collaborative care clinic. Coordinating multidisciplinary care for people with long COVID, therefore, would require out-of-the-box thinking when compared to current “switch boards” that put physician needs above patient needs.
There is no need to start from scratch. However, there is every need to change the status quo.
Finally, disability accommodations are essential for long COVID patients; this remains an enormous hurdle. The American public has 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. No long COVID patient can be left unhoused, hungry, afraid, and alone due to illness. Unfortunately, our research and practice suggest that this has not only been the case but is getting worse for those who have now been sick for nearly five years.
Reimagining medicine involves shifting clinics and care to convey a new normal. What people need are holistic healers who can sit, listen, and spend time coming up with plans for navigating a new normal. Reimagining long COVID clinics, therefore, involves not only training clinicians about what complex chronic conditions are but also matching patients with clinicians who are knowledgeable and experienced caring for them. Recognizing existing physicians who are doing this work should be a starting point. As we prepare for the next pandemic, and care for people with complex chronic conditions, we must recognize that there is no need to start from scratch. However, there is every need to change the status quo.
