Nearly three years after the Covid-19 pandemic began, experts are still struggling to understand what causes long Covid, how many people develop it, and how to treat it.

'There is absolutely nothing anywhere that's clear about long Covid'

Currently, estimates of how many people experience symptoms of long Covid vary widely between studies, largely because there is no universal definition for the condition. However, more conservative studies estimate that millions of people have developed the condition.

Symptoms of long Covid vary widely between patients. For instance, some people experience symptoms like brain fog, fatigue, and depression, while others report an entirely different set of symptoms.

"There is absolutely nothing anywhere that's clear about long Covid," said Steven Deeks, an infectious disease specialist at the University of California, San Francisco. "We have a guess at how frequently it happens. But right now, everyone's in a data-free zone."

To determine the underlying cause of long Covid, researchers are exploring a wide range of theories, including inflammation, autoimmunity, microclots, and traces of the virus that remain in the body. According to Deeks, institutions need additional funding to establish regional centers of excellence and attract physicians across multiple specialties to treat patients and research therapies.

Meanwhile, many patients suffering from long Covid say they are eager to try any treatment that will help them feel normal again—and they often they post personal anecdotes online. "I'm following this stuff on social media, looking for a home run," Deeks said.

Experts seek 'some sort of a protocol' for treating long Covid

With no standard for treating long covid, experts are exploring a variety of treatment options—and some are ready for formal clinical trials.

NIH is making strides through a program called the RECOVER Initiative, which involves thousands of patients and hundreds of researchers.

"Given the widespread and diverse impact the virus has on the human body, it is unlikely that there will be one cure, one treatment," said Gary Gibbons, director of the National Heart, Lung, and Blood Institute. "It is important that we help find solutions for everyone. This is why there will be multiple clinical trials over the coming months."

Meanwhile, many experts remain hesitant to prescribe treatments before they have been substantiated by research.

Kristin Englund, who oversees over 2,000 patients being treated for long Covid at the Cleveland Clinic, noted that experiments involving a single patient could hinder research efforts. Instead, Englund encouraged her team to rely on "evidence-based medicine" when treating patients with long Covid.

"I'd rather not be just kind of one-off trying things with people, because we really do need to get more data and evidence-based data," Englund said. "We need to try to put things in some sort of a protocol moving forward."

Still, other doctors are willing to prescribe any treatment that might help patients suffering with symptoms of long Covid.

"People like myself are getting a little bit out over my skis, looking for things that I can try," said Stephen Heyman, a pulmonologist at the long Covid clinic at Ascension Saint Thomas.

Heyman has prescribed medications aimed at treating addiction and combinations of drugs typically prescribed for cholesterol and blood clots.

Heyman has even considered trying alternative treatments on himself. Previously, he believed he overcame long Covid—until he got infected again and now feels more fatigued than ever.

"I don't think I can wait for somebody to tell me what I need to do," he said. "I'm going to have to use my expertise to try and find out why I don't feel well."

HHS releases comprehensive report on supporting long Covid patients

Last week, HHS released its third report on long Covid. While previous reports outlined federally funded resources available to patients and detailed the federal government's research agenda, this report focused on how the health care and public sectors can support the millions of Americans living with the condition.

For the Health+ Long COVID report, HHS gathered data from over 1,000 hours of interviews, workshops, and human-centered research with the public. To gain an understanding of how stakeholders can drive social, public health, and economic solutions, the agency included the narratives and expertise of those with long Covid. 

According to the report, there are ways the health care and public sectors can support patients with long Covid, including:

• Health care providers should create materials designed to educate patients and their families about long Covid
• Insurance providers should update plan guidelines that align coverage with treatments to improve outcomes for those experiencing symptoms 
• Educators and employers should provide accommodations that allow long Covid patients to continue working and studying
• Federal agencies should publish messaging that classifies long Covid as a serious public health issue 

(Farmer, Kaiser Health News, 11/22; Carbajal, Becker's Hospital Review, 11/21)