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Nearly a year into the coronavirus pandemic, the perplexing problems of Covid-19 long-haulers seem no nearer resolution — or even explanation — than when they first puzzled doctors and patients in the spring.

This much is known: Long haulers, recovering patients whose symptoms persist after their coronavirus infections disappear, are a mix of younger people who never needed hospital care and older people with chronic conditions that predate Covid. Their symptoms trail the infection’s path through their lungs, hearts, muscles, nerves, and brains. Deadening fatigue can dog them for weeks or months. Sometimes their problems wane, then resurface in a stuttering pattern that leaves them wondering if they’ll ever get over the malaise.

With a growing sense of urgency as cases mount across the U.S., physicians have launched specialized clinics to treat and study these “long Covid” patients, creating registries to track their progress. But answers are elusive: Why does brain fog or muscle weakness or shortness of breath linger in some people and not others? What can help lift the fog or restore their vigor? Can these people ever resume normal life?

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“I don’t think this is going to be easy to figure out,” said Steven Deeks, a professor of medicine at the University of California, San Francisco, who is leading a clinical trial to find answers. “The vaccines and therapeutics, they were easy. With this post-acute Covid syndrome, we have no idea how to measure it. We have no prior experience in terms of defining it or treating it, so it’s kind of a wild, wild West right now.” 

The Centers for Disease Control and Prevention estimates that about a third of Covid-19 patients still feel after-effects two to three weeks after their infections clear and they test negative for the virus. One in four of those people was 18 to 34 years old and had no chronic medical conditions before falling ill with Covid-19, according to CDC’s report, released in July. A survey conducted in the U.K. concluded in November that 1 in 5 people who tested positive for SARS-CoV-2 (the virus that causes Covid-19) suffered from symptoms lasting five weeks or longer; 1 in 10 said their problems lasted 12 weeks or longer.  

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So far, there is little science beyond case reports and anecdotes to guide clinicians treating these patients, whose difficulties are distinct from the delirium and PTSD sometimes seen after a stay in a hospital intensive care unit. The clinical trial Deeks leads at UCSF is tracking a cohort of people with enduring post-Covid symptoms — some who did and some who didn’t become critically ill from the coronavirus —  to build a bank of blood and saliva samples obtained early in their disease to understand virologic, immunologic, and host factors that might correlate with being a Covid-19 long-hauler.

There is a consensus that the problem is more common in women than men, unlike the overall mortality rate, which is higher in men. The CDC survey did not find an association between race and return to full health after Covid-19, but the small number of respondents limits any conclusions to be drawn. How the problems play out in different people is unpredictable, doctors say, with some gradually getting better and others not. Multiple organs are involved, so multiple biological mechanisms might be at play.

Post-viral infection is not new. It’s been seen with Ebola, and the first SARS virus in the early 2000s also gave rise to long-lasting symptoms after some people recovered. A 2009 study in Hong Kong found that psychiatric problems and chronic fatigue still plagued SARS-1 survivors up to four years later. People who completely recover from an Ebola infection can still suffer from fatigue, headaches, muscle, joint and stomach pain, eye problems, memory and hearing loss, and mental health issues. The Ebola virus can persist in their bodies, including in the eyes and the central nervous system, even after being cleared from the rest of the body.

Some theories suggest that prolonged symptoms arise when a patient’s immune system never resets from high alert during the original infection, turning into an autoimmune response that attacks the body, or developing autoantibodies that target shreds of cells destroyed by the virus. The symptoms that Covid-19 long-haulers report resemble those experienced by people with chronic fatigue syndrome/myalgic encephalomyelitis syndrome, believed to be another post-viral infection.

Whether any of this also happens in Covid-19 is unclear. The UCSF study is looking at the “black box of inflammation,” Deeks said. It could be the coronavirus is still causing symptoms, or it’s the ongoing inflammation that’s to blame. Abnormal clotting early in the disease — a hallmark of Covid-19 — could also have damaged the lungs, the heart, and the nervous system.

How long these ill effects last is an open question.

“It’s impossible to study the long-term outcomes of a virus that’s only been around for several months,” Deeks said. “So we are learning as we go.”

While research goes on at UCSF and elsewhere, published reports, anecdotes, and experience are guiding clinicians day to day. As their observations add up, they are accumulating strategies to guide the care they offer patients, which begins with listening to them.

“Meeting patients where they are at and believing them is the most important thing we do, telling them ‘I hear you, I believe you, and I’m going to try to help you navigate the health care system and figure this out,’” said Dr. Monica Lypson, co-director of the COVID-19 Recovery Clinic at George Washington University Medical Faculty Associates in Washington, D.C.  

Her clinic evaluates patients and offers advice and sometimes medications, to manage dizziness caused by low blood pressure, for example. Sometimes Lypson refers patients to cardiologists, aware some may be at risk for future cardiovascular complications, or to neurologists, who can evaluate numbness or tingling as well as cognitive symptoms. She’ll recommend a memory clinic to patients who she thinks can be helped by specialists typically treating people with dementia or delirium.

A few patients have told Lypson their problems finally began to dissipate five or six months after they fell ill with Covid-19. It’s not enough to pronounce them cured or to predict another patient’s trajectory, but it does give her hope. In the meantime, she makes sure patients see a physical therapist to help them manage activities of daily living — for example, dressing, showering, eating. “We use physical therapy as a tool to help us understand what accommodation might be needed,” she said.

Some patients have come to the GW clinic rather than remain on a waiting list for the Mount Sinai Center for Post-Covid Care in New York. When it opened in May, it was among the first to devote its attention to long haulers and study their post-infection course. More than a thousand patients have been evaluated, said Zijian Chen, the center’s medical director, but treating them is still like traveling in unexplored territory.

“There’s really no Covid-19 experience. This is a completely new disease,” he said. “A lot of it is almost trial and error in that we look for things that may help with the symptoms, that we try to see if it works on certain patients.”

Patients are screened for inflammatory markers in their blood or for memory problems. Imaging is performed to spot structural damage to the lungs, heart, or other organs. And symptoms are addressed: They learn breathing exercises or how to build up exercise tolerance. Some people do feel better.

“Not everybody is getting back to normal,” he said. “But there is some good response to some of the things that the groups are doing.” 

He hopes treating and studying these patients will lead to improved outcomes, just as the recognition of unusual blood clots and who benefitted from ventilators did earlier in the pandemic. 

At outpatient clinics run by Spaulding Rehabilitation Hospital in Boston, patients are also offered strategies to cope with symptoms. That might be developing compensatory skills for memory problems, assessing joint complaints and their causes, or building muscle through controlled exercise, said Ross Zafonte, chief medical officer. Other medical problems are evaluated, whether they are cardiac, pulmonary, or related to peripheral nerve disease.

Patients are also invited to participate in research to unravel the reasons why the virus can have such lasting effects, but the primary message Zafonte wants to send is that care is available. “There are a lot of people with symptoms,” he said. “There are opportunities [for people] to be seen in clinics that focus on this.” 

Lypson, Zafonte, and Chen all worry about the psychological impact on patients.

“The world is a gloomy place, unfortunately, right now,” Chen said. “It’s even worse for them. They have to deal with all these extra symptoms so their anxiety, their level of sadness, their depression is higher. I want patients to know that this is normal and that there’s help out there.”

  • I wish this problem were addressed far more frequently and openly in the general media. I often see it addressed in medical publications, but seldom on the evening news. I sense that there are large swaths of the population that don’t even really know that this is a thing – and a serious thing for many thousands of people. Perhaps if they did, some of them wouldn’t be so cavalier about Covid safety, or maybe I’m assuming too much.

  • Long hauler looking for an answer:

    Has any long hauler gotten the vaccine yet and experienced any issues or side effects?

    I tested positive in March and have been dealing with a slew of symptoms ever since. Nobody wants to believe you that you’re going through what you’re going through…so much to the point that I don’t even mention it to anyone anymore.

    I’ve had the opportunity twice now to get the vaccine as I’m a healthcare worker…but I’ve been hesitant as I’m just not 100% confident in the whole situation as it seems not much is known about the long haul/receiving the vaccine scenario.

    • I got the vaccine last week and it was god awful. I had the Covid symptoms all over again. I’m a long hauler and a healthcare worker. 15 hours after the vaccine I got a fever, chills,sweating, fatigue where I slept for 2 days , vomiting, pain throughout my whole body. Very anxiety producing. Doctors say take it because they don’t know what it’s like. I don’t know if I’m going to get the second shot. It took 2 1/2 days until the worse of it settled down

  • I tested positive for CoVid on December 4, 2020. Symptoms were pretty much gone by 12-11. I retested to go back to work on 12-17 and it came back positive still. Had to wait 10days to be retested again on the 28th. Still positive and now I am experiencing breathing issues….

  • omg. an entire article talking about how doctors have to wing it because so much is unknown. and then ends with “there’s help out there.” no, there isn’t.

  • I am a long hauler. Mild case of COVID in March. No sore throat, no temperature or cough. Had horrible gastro issues, short of breath, loss of smell and taste, “pink eye”, tremendous sleepiness and fatigue. Also. Could not swallow which resulted in esophagus procedure. Still having gasping for air occasionally, eyes sealed shut, lack sense of smell, sleepiness (can’t keep my eyes open-sleep 18 hours). All of these symptoms are getting better but very slowly. Thirty years ago I suffered with transverse myelitis. Never back to normal. Suffer with chronic myofachia syndrome, fatigue and pain. Now fighting all of these symptoms, I have depression and worse brain fog since COVID. If you try to help yourself feel better by taking care of yourself then family and friends assume everything is fine. A two edge sword. It’s a tough battle especially being a widow for 15 years. Thanks

  • we in Kazakhstan use herbal medicine in our practice for the treatment of post-acute covid. come visit, we will teach you to be healthy. it’s cheap and effective

  • How frustrating to read about doctors treating Long Covid who don’t appear to have any clue about postviral syndromes and the underlying very treatable conditions: mast cell activation, dysautonomias such as POTS, adrenal insufficiency, ME/CFS. There is a significant body of knowledge that they seem unfamiliar with. This is particularly evident from the description of using physical therapy to ‘increase exercise tolerance’, which is an outdated approach that has been shown to be dangerous and counterproductive. I hope these doctors learn to avoid further harming patients before too much more damage is done.

  • This is all well and good but those of us in the rural areas can’t get to Boston.. I may never nurse again.. I got brain fog, fatigue, still on oxygen 3 weeks out of hospital.. I can’t follow conversation more the a minute..

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