For coronavirus patients who had to be admitted to intensive care units, there’s a related explanation: Long before the pandemic, the intensive care community coined a term for the persistent symptoms people frequently experience following stays in an ICU for any reason, from cancer to tuberculosis. These symptoms include muscle weakness, brain fog, sleep disturbances, and depression — the aftermath of a body lying around in a hospital bed for days on end and injuries or side effects from treatments patients received, including intubation.

The term “post-intensive care syndrome” was “created to raise awareness and education, because so many of our ICU survivors were going to their primary care doctor saying they were fatigued,” said Dale Needham, who has been treating Covid-19 patients in the ICU at Johns Hopkins. “They had trouble remembering, and they were weak. Their primary care doctor would do some lab tests and say, ‘Oh, there’s nothing wrong with you.’ The patient might walk away and feel like the doctor was saying, ‘It’s all in your head. You’re making it up.’”

The Covid-inspired medical revolution

So what might help alleviate the nagging symptoms of Covid long-haulers? One idea that’s been circulating is the Covid-19 vaccine: Some long-haulers are reporting their symptoms improving after they’ve gotten immunized. But others have reported feeling worse — and still others, no different. So researchers are racing to understand the effects of vaccination on long Covid, but it isn’t looking like a silver bullet just yet.

Proal had a simpler solution that could be implemented today: “It’s time for medicine to be rooted in just believing the patient.”

Even with growing awareness about long Covid, patients with the condition — and other chronic “medically unexplained” symptoms — are still too often minimized and dismissed by health professionals.

People “want disease to kill you, or they want you to return to miraculous good health,” said Jaime Seltzer, director of scientific and medical outreach at the chronic fatigue syndrome advocacy group ME Action. “When you stay sick, compassion can fade. And that is not just friends and family. That is your clinicians as well; they want somebody fixable.”

But long-haulers of any chronic condition can exist in a space between sickness and health for years, sometimes without a diagnosis. Their unexplainable symptoms can elicit outright skepticism in health professionals who are trained to consider patient feedback the “lowest form of evidence on [the evidence hierarchy], even under research on mice,” Proal said.

The situation can be even more challenging for patients who never had a positive PCR test confirming their Covid-19 diagnosis. Of the dozens of medical appointments one Covid-19 long-hauler, Hannah Davis, had for her ongoing symptoms — which include memory loss, muscle and joint pain, and headaches a year after her initial disease — one of the best experiences involved a doctor who simply said, “I don’t know.”

“The doctor [told me], ‘We are seeing hundreds of people like you with neurological symptoms. Unfortunately, we don’t know how to treat this yet. We don’t even understand what’s going on yet. But just know you’re not alone,’” she recounted. “And that’s the kind of conversation that needs to be happening. Because we can wait, but we can’t have the doctor’s anxiety being projected onto us as patients.”

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