Sept. 2, 2022 — Many patients struggling with long, debilitating COVID symptoms interfering with their daily lives may be tempted to go straight to a specialist — whether it’s a pulmonologist for breathing problems or a physiatrist for muscle fatigue — around to see it if they have long COVID. But medical experts – including many specialists treating the most complex long-running COVID cases – recommend starting elsewhere: primary care.
“Their primary care physicians often have the best knowledge of patients’ full medical histories, and that context is important to the process of diagnosing someone with long-COVID,” says Benjamin Abramoff, MD, who directs the long-COVID collaboration for the American Academy of Head of Physical Medicine and Rehabilitation.
GPs have been at the forefront of diagnosing long COVID since the early months of the pandemic, when it became clear that a large number of patients had persistent symptoms many weeks after their original COVID-19 infection had cleared.
An early guide to diagnosing long COVID in primary care, published in The BMJ in August 2020, estimated that 1 in 10 patients had long illness following COVID infections. That estimate now looks low. A July 2022 report by the CDC found that 1 in 5 people infected with the virus currently have long-standing COVID symptoms.
Diagnosing long COVID has been challenging as there is no easy way to look for the condition and no single group of symptoms that will definitely lead to the correct diagnosis. GPs, who often do detective work to uncover what conditions might explain patients’ ailments, are well placed to cast a wide net in exploring possible causes of the complex mix of symptoms that are commonplace in long-term COVID.
Symptoms of long COVID include fatigue, a cough that won’t go away, shortness of breath, lack of smell or taste, difficulty concentrating, insomnia, sexual dysfunction, chest pain, and dizziness, says Dr. Kristin Englund, director of the Cleveland Clinic reCOVer Clinic, which has long treated COVID patients.
Given how complex this is, experts say there are many good reasons to seek a diagnosis in primary care.
Easier access to care is an important reason. GPs tend to be closer to the patient’s home, and many make time to see sick patients quickly. Specialty clinics dedicated to long-term COVID care are usually concentrated in academic medical centers in major cities and may face long waits for new patients. The sooner patients are screened, the sooner they can start treating symptoms that are interfering with their daily lives.
A family doctor who knows the patient well may be able to better distinguish the symptoms that are typical of the COVID infection from old health problems that are reappearing.
“Working with a primary care physician can avoid unwarranted and expensive diagnostic tests first,” says Kathleen Bell, MD, a neurorehabilitation specialist at the University of Texas’ Southwestern O’Donnell Brain Institute, who helped establish her COVID-Recover program. “Patients should always discuss health care issues with their GP.”
While many experts agree that primary care is the best place for a long COVID diagnosis, they also agree that the process is imperfect and that not all of these doctors are up to the task. There are still no evidence-based guidelines for diagnosing long-term COVID. And sometimes this diagnosis can be overlooked in primary care, especially when symptoms closely resemble those of other chronic health conditions that have become more prevalent during the pandemic — such as depression, burnout, and chronic fatigue.
When patients show up with too many unexplained symptoms, primary care physicians may also choose to refer patients to local specialists who can examine each issue separately, says Alba Miranda Azola, MD, co-director of the Post-Acute COVID-19 team at Johns Medical School at Hopkins University.
“What sometimes happens in reality is that patients go to their GP, they walk in, they have 15 minutes, and they rant about all these symptoms, which are multi-systemic,” she says. “The GP doesn’t have time to deal with all these symptoms — it’s gastroenterology, cardiology and neurology — and he’s referring all these different specialists.”
Although referrals often help ensure patients are properly diagnosed, it doesn’t always work because not all of these specialists have experience diagnosing long-term COVID, Azola says. “You see the cardiologist saying all the tests are fine and I can’t help you, then it’s the same with all the different specialists.”
Patients who suspect long COVID but do not receive that diagnosis despite persistent symptoms may want to go to a specialty long COVID clinic for a second opinion, says Monica Verduzco-Gutierrez, MD, chair of rehabilitation medicine and director of the COVID 19 Recovery Clinic at the University of Texas Health Science Center in San Antonio.
“When the GP has limited knowledge on the subject, or limited treatment options, or patients may be becoming more chronic and have multiple conditions and symptoms to manage, this would be where a multidisciplinary long COVID clinic could be an excellent option,” she says.
Long COVID can be diagnosed if patients have persistent symptoms four weeks after the onset of infection, according to the CDC. Many specialized long COVID clinics focus on more severe, complex cases and do not see patients unless their symptoms do not go away for at least 3 months.
This makes sense because many long-term COVID patients can be effectively diagnosed and treated in primary care, says Tochi Iroku-Malize, MD, founding chair and professor of family medicine at the Donald and Barbara Zucker School of Medicine in Hofstra/Northwell. And primary care remains the best place for patients when they have worrisome, unexplained symptoms – whether it’s long COVID or not.
“As healthcare providers continue to learn more about long-lasting COVID, it’s important to start with a healthcare professional you know and trust — your GP,” she says.
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