A lack of provider literacy is straining people with Long COVID. Training programs for doctors could help.

Teresa Michelsen never expected to have a problem getting medical care in Seattle. The city is home to a major teaching hospital within the University of Washington, ample public health funding from tech-fueled philanthropy institutes like the Gates Foundation, and nationally-recognized specialty medical institutions like the Fred Hutchinson Cancer Center. 

Seattle is the opposite of a health care desert. But when she started having neurological symptoms related to Long COVID, it started to seem like one to Michelsen. Pushed from specialist to specialist, it took years for her to get any kind of relief.

Her experience is typical: Across the board nationally, primary care providers are largely uneducated on Long COVID, and typically don’t have the time or expertise to appropriately treat it. But some medical institutions are trying to address this knowledge gap through new training programs and resources to get clinicians up to speed.

Twelve health centers across the country have received funding from the Agency for Healthcare Research and Quality (AHRQ) to improve Long COVID care through a number of avenues, including support and education for primary care providers who are often the first line of defense in Long COVID treatment — but rarely well-equipped to provide it.

Additionally, Project ECHO, which uses a collaborative model to educate physicians, is currently partnering with the University of Washington, the Family Health Centers of San Diego, and the University of Colorado on a Long COVID and Fatiguing Illness Recovery Program. The program convenes monthly webinars targeted toward primary care providers, aiming “to rapidly disseminate” research and best practices related to both Long COVID and myalgic encephalomyelitis (ME).

At the institutional level, educating physicians to better manage Long COVID encompasses a huge variety of interventions, from improving supports for rehab psychologists and physical therapists to offering clinicians office hours, webinars, and trainings on Long COVID care. At AHRQ grant recipient the University of Washington, Long COVID clinicians educate medical residents in their primary care rotations, and electronic consultations on Long COVID are available for primary care providers within the medical system, guiding their approach to Long COVID and connecting patients more efficiently with specialists’ advice.

But it’s not enough to educate current doctors, said Dr. Janna Friedly, a physiatrist by training and the founder of the University of Washington’s Long COVID Clinic in Seattle. “This will need to be incorporated into medical education at the medical school level and in residency training,” she said. “But [it’s] a start.”

Specialty centers support broader education

Each of the 12 centers funded by AHRQ have taken on similar approaches to educating physicians. The grants, which were allocated in amounts of $1 million each across a five-year period, presented a major, much-needed step forward in funding Long COVID education.

“This clinic was started by us with no resources, so we just jumped in and saw a need and volunteered our time,” said Friedly. This is true of most Long COVID clinics — which also carry most of the public health burden of the disease, given the disconnect that often occurs in primary care.

“We weren’t able to see as many patients as we needed to and provide the level of support and coordination of care and for the complexity of the patients, and we also were not reaching some of the most vulnerable patients,” said Friedly, whose interest in Long COVID emerged from her own experience with the disease.

By the time patients get to her clinic, she said, they’ve often been put through a gauntlet of referrals and tests by previous providers, as Michelsen was. “They’ve already seen the cardiologist, the neurologist, the pulmonologist, the allergist,” said Friedly. “They’ve seen all of these different specialists, none of whom have really been able to substantially help the patient.”

Better education for primary care providers could be one way to disrupt this frustrating feedback loop. But it’s an uphill battle: ​​At a Long COVID symposium the University of Washington held in October, sessions targeted extremely basic misunderstandings about Long COVID, including provider disbelief and skepticism.

They’ve already seen the cardiologist, the neurologist, the pulmonologist, the allergist… They’ve seen all of these different specialists, none of whom have really been able to substantially help the patient.

Dr. Janna Friedly

Clinicians may not be accustomed to energy-limiting illnesses with severity that ebbs and flows or otherwise doesn’t “fit in our illness script,” said Dr. Tiffany Walker, a professor at Emory University, also an AHRQ grantee and member of the Long COVID Care Network at the symposium. “But this is very true in Long COVID… We shouldn’t discount this just because it’s unfamiliar.”

Until primary care providers get up to speed, clinics that are in a position to treat Long COVID will be among the few resources available to patients. They’re often isolated exceptions in a sea of institutions and providers with little grounding in how to care for people with infection-associated chronic diseases.

Dependence on this handful of providers can lead to burnout for clinicians: The University of Washington’s Long COVID clinic once had 15 providers. Now it’s down to just seven.

This scarcity also limits how much dedicated clinics and providers can help people with Long COVID, especially if clinics resist prescribing medications like Low-Dose Naltrexone off-label or don’t adequately treat related diseases and conditions like ME, dysautonomia, or mast cell activation syndrome.

Collaborating to better meet needs

It’s challenging for this small network of clinics to meet patient needs for Long COVID at scale.

For many people with Long COVID, specialized clinics like hers are a last stop after navigating an odyssey that begins in primary care, where even minimal training in the disease would likely make a difference.

Matt Preston, who was able to find Long COVID treatment at New York City’s Mount Sinai, said that specific training and experience in Long COVID for providers would be helpful. Most of the primary care physicians he’s seen were “almost too afraid to address it.”

For Michelsen, just having enough time with a provider made an important difference. When she was navigating chronic migraines long before her Long COVID diagnosis, she recalled, she had “a standard hour” with her primary care provider. This created more opportunity to talk through experimental treatments, two of which she ended up using with success.

Greater coordination across institutions could also change things for the better. “I need my docs to think beyond Seattle and form a network with the few national or international centers that exist, and have some appropriate need- and science-based prioritization,” Michelsen said. Right now, access to services feels random, she said, and largely dependent on how much money — or luck — patients have.

When someone develops Long COVID, said Friedly, ideally, they’d receive treatment within the three- to four-month window after chronic symptoms start. “Then we could intervene,” she said. A provider with knowledge of the disease could determine which tests and treatments to order, according to the individual patient’s needs. It sounds basic, but it “can really head people off in the right direction,” she said. And until more primary care physicians can provide this kind of care, the frustrating trajectory of dismissal and ignorance Michelsen and Preston encountered will be a much more common experience.

I need my docs to think beyond Seattle and form a network with the few national or international centers that exist, and have some appropriate need- and science-based prioritization.

Teresa Michelsen

Programs like Project ECHO and those within the COVID Care Network are part of a growing movement to address knowledge gaps among physicians that lead to this subpar care, particularly when it comes to chronic illnesses that aren’t well understood or covered by a typical medical school education. 

Last year, #MEAction, an advocacy organization for people with ME, launched “Teach ME, Treat ME,” a program that partnered with medical schools to improve clinician literacy around the disease. #MEAction held 20 medical education events as part of this program last year, and plans to continue this physician-focused work in 2025 through partnerships with Brown University, the Mayo Clinic, Emory University, and the University of Montreal.

In September, the group’s Georgia state chapter hosted an event called “Voice of the Patient: A Panel Discussion with #MEAction Georgia” in collaboration with the Centers for Disease Control and Prevention (CDC) and the Nell Hodgson Woodruff School of Nursing at Emory University.

“More than anything else, this event humanized ME to the people in attendance,” #MEAction Georgia stated in a press release. “Hearing patients or caregivers talk about who we were before and what ME has taken from us, seeing patients struggle to tolerate the projections or the sound of a room of people, hearing the knowing reactions to anecdotes of struggles to access health care or support.”

These interactions ensured that “every single person in attendance left with a much more nuanced perspective on what the patient/caregiver experience is truly like and what their research/medical care has the potential to give us. Purpose became personal instead of purely academic.”

Programs like these offer hope for patients and providers, and a crucial starting point for improving delivery of care. But the need for them in the first place reveals major flaws in delivery of primary care in the U.S. more broadly.

For Friedly, addressing these challenges built into primary care itself will need to be part of ongoing efforts to better educate physicians on conditions like Long COVID. More primary care providers are needed across the board, she said, and the ones practicing now need more time with their patients: It’s difficult to adequately manage a complex illness like Long COVID during a 15-minute appointment window. “I don’t know how far we will get, even with education, because the system is set up so that primary care physicians are overwhelmed,” she said.

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Megan Burbank is a writer, reporter, and editor based in Seattle. She specializes in enterprise reporting on gender and health policy, which she has covered for NPR, Axios, and The New Republic, among other outlets.

Editor’s note, April 21: In response to this story, The Sick Times received a letter from a reader sharing a harmful experience with the University of Washington’s Long COVID clinic and calling those providers’ expertise into question:

Letter to the editors: The University of Washington’s Long COVID clinic

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