Thread by @Dakota_150

"What patients find at long COVID clinics: rejection, outdated therapies, and unanswered questions"

Roughly 16M Americans are living with long COVID but many are not getting the right medical care. One way to improve the system is by letting patients lead
popsci.com/health/long-co…

'My experience is not unique. This summer, the US Census Bureau reported that close to 16 million American adults are living with long COVID, a debilitating condition that lasts at least four weeks beyond an initial coronavirus infection and affects multiple organ systems.

It has been observed in all age groups, and has placed stress on the US healthcare model that relies on short doctor’s visits. Even though high-demand clinics, sometimes called post-COVID care centers, now offer services for the illness, many fail the very patients they have set

out to help.

Long COVID patients often share anecdotes about how the clinics they are admitted to often turn a blind eye to the gravity of their needs and fail to incorporate knowledge learned from myalgic encephalomyelitis, or ME, and other infection-associated illnesses.'

Lucinda Bateman, founder and medical director of the Bateman Horne Center in Salt Lake City, is one of a small number of ME specialists in the county. She has been treating and researching the illness for more than three decades. “I can tell you from our close assessments that

many people with long COVID become severe enough and chronic enough to meet these criteria [for ME/CFS],” she says. “So I would consider them SARS-CoV-2 induced ME/CFS.”

One of the least-acknowledged, but most-critical-to-address questions of long COVID is how it overlaps with ME. Before the COVID pandemic began, as many as 2.5 million Americans were already living with ME. Because the disorder has been stigmatized and underfunded for decades,

few physicians are are able to diagnose and treat it. In fact, less than one-third of medical school curricula in the US include education about ME."

Because so many physicians are uninformed about ME, some at long COVID clinics prescribe therapies that have been proven to be harmful to patients who experience post-exertional malaise (PEM). Graded exercise therapy (GET)—a controversial form of physical therapy for ME and

long COVID which slowly increases exercise over time— worsens patients’ symptoms who experience PEM. “Graded exercise therapy implies that you can exercise yourself into fitness and resolve the illness,” Bateman says. “When in reality, that’s not the case.”

“The issue is that for most clinicians the disease is incredibly complex,” says Jaime Seltzer, the director of scientific and medical outreach at the advocacy group #MEAction. Clinicians who are faced with this level of complexity, she says, may turn to treatments like GET

because they are based on simple hypotheses."

“There is a lot you can do for ME/CFS,” Seltzer says. “There’s no cure, but that’s not the same thing as saying it cannot be managed.” She points out that many people with ME have grown frustrated with the narrative that long COVID

is a new and mysterious illness, and says that it perpetuates an excuse for clinicians to not be blamed for failing to help. “It is absurd that they are turning away good information because of stigma.”

Akiko Iwasaki, an immunologist at Yale School of Medicine and a leading

long COVID researcher, agrees with Seltzer: Had there been more research and funding devoted to studying ME, she says, we would have been much better prepared to deal with long COVID. “I’m hoping that any insights we gain from long COVID will also apply to [ME].”

At some point, long COVID will become enough of an issue that it will demand change, Bateman says, but she worries about how many people will have to suffer until then. “I’m hopeful that the response to long COVID will improve. But I would like to see it move more quickly and

include all of the people with post-viral syndromes who are in need.”

H/T @mileswgriffis, @exceedhergrasp1, @MEActNet, @LBatemanMD, @BatemanHorne