COVID-19 'Long-Haulers' Search for Answers About Chronic Cases

Karyn Bishof, a firefighter and paramedic based in Boca Raton, Florida, says her experience with COVID-19 initially followed a "normal" trajectory. She received a positive diagnosis on March 26 and experienced three weeks of fever, fatigue, coughing, and shortness of breath—all common symptoms, according to the Centers for Disease Control and Prevention (CDC).

Things changed at week six.

Bishof, 30, tells Verywell her symptoms began to evolve and expand, spreading through her body in ways that failed to mirror what scientists and doctors were saying about the disease at the beginning of the pandemic. She says she's experienced over 60 different symptoms, from bradycardia (slow heart rate) and tachycardia (fast heart rate) to bulging veins and bladder leaks.

“Every single day I feel like I got hit by a train," she says. "I can't get out of bed, and if I do, it is followed by days and days of not being able to do anything."

Today marks day 135.

Bishof turned to a Facebook support group to see if anyone else was having the same experience, and was floored to find thousands of other people with prolonged symptoms. They now have a name for themselves: long-haulers.

To learn more, Bishof created the Confirmed Case Long-Hauler Only Survey, which compiled information from 1,500 people to generate a profile of what this post-COVID-19 syndrome looks like. The data from the survey highlights that 82% of participants experienced symptoms for over two months, and 54% for over three months. 

“For many people, the doctors they have had for years simply don't believe them and don't believe a long-haul experience from COVID-19 is real,” Bishof says. “People are being diagnosed with illnesses that are likely, in fact, not those illness, but instead a result of COVID-19, simply because of the lack of understanding of COVID-19 thus far.”

The CDC is beginning to recognize this prolonged type of illness, publishing a report on the topic on July 24.

"In a multistate telephone survey of symptomatic adults who had a positive outpatient test result for SARS-CoV-2 infection, 35% had not returned to their usual state of health when interviewed 2–3 weeks after testing," the report says. "COVID-19 can result in prolonged illness, even among young adults without underlying chronic medical conditions."

Studies and Trials are Failing to Include Many People With Prolonged Illness

Hannah Wei, a qualitative researcher based in Canada, tells Verywell she found support for her chronic case of COVID-19 in the Slack-based support group Body Politic. The group, which has 7,000 members, worked together to create a patient-led research survey that paints a picture of what COVID-19 recovery looks like for long-haulers.

 “A lot of the patients in our community have not gotten a positive test result, and they have the same symptoms as the people who tested positive, so we are advocating for treatment for them as well,” Wei says. 

According to Wei, the lack of a formal diagnosis serves as a barrier to getting into medical trials and research studies, causing many people long-haulers to become statistically insignificant and left untreated.

“Almost 48% of our participants were either denied testing or did not have access to a test,” Wei says. “What we are advocating for is more research to be done for the long COVID cohort, because you can imagine that a lot of these people who have tested negative, myself included, were not in the hospital, and we see that a lot of clinical trials are occurring only for patients who have stayed in the hospital.”

Pinpointing a Cause

Experts are noticing that some of the symptoms reported by people with prolonged cases of COVID-19 mimic those found in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a chronic illness that can trigger severe exhaustion, sleep disturbances, and cognitive dysfunction.

Jihan Saba, MD, FACR, a rheumatologist based in Fort Lauderdale, Florida, tells Verywell that CFS can develop after viral infections. A noted example is Epstein-Barr virus. 

Researchers identified a link between ME/CFS and viral infections years before COVID-19. In one 2016 survey, almost 75% of ME/CFS patients were found to have contracted a viral infection before their ME/CFS symptoms appeared. A 2007 study on SARS found that survivors in Toronto reported extreme fatigue even a year after recovering from the virus.  

However, Saba says there could be multiple other explanations for what people like Bishof and Wei are experiencing. One of them focuses on the abnormally high levels of inflammatory molecules in the blood of COVID-19 patients. 

“The immune system response to COVID-19 can be overwhelming to many tissues in the body, causing collateral tissue damage as it is trying to attack the virus," Saba says. "This systemic inflammatory response is the cause of the severe presentations of COVID-19. The clotting system is also activated by the inflammatory response, so micro blood clots are another part of the problem.” 

Typically, an immune response subsides after an infection subsides. But experts think the immune system could get trapped in this overactive state in some people, triggering the stream of symptoms seen in COVID-19 long-haulers. 

“COVID-19 long-hauler causes are all speculation so far," Saba says. "But researchers are looking into several aspects that could be at play in different individuals, including the ebb and flow patterns that happen with other viral infections, the possibility of reinfection, a post-viral syndrome which can have different presentations, genetic factors, and COVID-triggered immune syndromes."

Recovery and Treatment Options 

The medical community has yet to find a standard way of treating this post-COVID-19 syndrome. According to Noah Greenspan, DPT, a cardiopulmonary rehabilitation specialist in New York City and founder of the Pulmonary Wellness Foundation (PWF), this is partially because the scientific spotlight is still focused on the acute emergency elements of COVID-19.

 “Until the fire is out, you don’t start repainting your house,” he tells Verywell. “And at this moment, for many parts of the country, the fire is still raging.”

To fill this informational vacuum, the PWF, a non-profit group dedicated to the health and wellness of cardiopulmonary patients, created the COVID Rehabilitation & Recovery Program. The program consists of education and support through a twice-weekly series of Zoom sessions where Greenspan and Bishof conduct live Q&A sessions for long-haulers. Greenspan brings in top specialists from different fields to discuss various COVID-19-related topics. 

 “Noah has genuinely been all-in with respect to trying to get us the help we need, and trying to understand the effects of COVID-19 and what we can do about it,” Bishof says. “He takes the time to educate people before answering questions, because a foundation is needed to understand the disease process occurring."

Bishof says long-hauler feedback is overwhelmingly positive.

"The comments we get are people saying, ‘I have learned more in the last hour and a half than I have learned in the past three months,' and 'for the first time, I feel like somebody understands what I am going through.'"

Greenspan emphasizes that with COVID-19 long-haulers, treatment has to be modulated in slow, measured steps. Going overboard can actually set a patient back significantly.

“Instead of talking about days, weeks, and months, we are talking about rehab in terms of seconds, minutes, and hours," he says. "I'm talking to colleagues around the country and in other countries who are finding similar types of things, so we have had to reset our mindset to say, ‘Okay, well, what we might normally accomplish in 42 days now may take three months.'"

Greenspan adds that the more long-haulers he interacts with, the better he gets at treating them.

"The good news is that as we are seeing more and more patients, we are starting to recognize trends and really beginning to get a handle on how to help people heal, both physically and emotionally," he says. "COVID-19 is definitely not for the faint of heart.”

In May, the Mount Sinai Health System in New York City opened a Post-COVID-19 Care Center to help patients heal from these complicated and often debilitating long-term symptoms. The center features a team of specialists that span many disciplines, from cardiologists and psychiatrists to radiologists and pulmonologists. 

Bishof, Wei, and Greenspan each emphasized the need for more of these centers, as well as the ability for all patients to have access to them. 

 “Every single state needs to open multiple locations providing this kind of care for people, and it needs to be free (for the most part) for people to receive care, treatment, testing, and medications,” Bishof says. "The larger the population being tested, the sooner possible treatments and solutions will be found. That, at least, is my hope.”

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The information in this article is current as of the date listed, which means newer information may be available when you read this. For the most recent updates on COVID-19, visit our coronavirus news page.