Long-lasting coronavirus cases look like chronic fatigue syndrome

• Many patients with COVID-19 who experience long-lasting symptoms report feeling faint or foggy after excessive physical activity.
• It is a hallmark of chronic fatigue syndrome, an often debilitating condition that can last for several years or more.
• Researchers are just beginning to understand the link between the coronavirus and chronic fatigue.
• Further investigation of the similarities could be essential for long-term patient care.
• Visit the Business Insider homepage for more stories.

Before Marissa Oliver landed in California in May, she was finally starting to feel recovered from COVID-19. Her breathing had improved: she could talk on the phone for half an hour or go for a 40-minute walk without much discomfort. But travel brought her down almost instantly.

“I relapsed when I got there,” Oliver, a 36-year-old director of an arts organization in New York City, told Business Insider.

Lately, she said, simple tasks like making back-to-back work calls can leave her “completely destroyed.”

It is not uncommon for patients with COVID-19 to experience a major setback in their recovery from excessive physical activity. In fact, doctors say feeling faint or foggy after normal tasks has become a distinct pattern in patients with lasting symptoms. It reminds them of another yet somewhat mysterious condition: chronic fatigue syndrome.

Patients with chronic fatigue – known clinically as myalgic encephalomyelitis – often “fall” or “relapse” from simple activities like taking a shower, going to the grocery store or receiving the mail. They may feel dizzy or weak upon standing up too quickly, or have difficulty thinking clearly. Some patients may be bedridden for several days or weeks without feeling better after sleeping or resting.

“There is talk in the medical community about a disease similar to chronic fatigue syndrome that could occur after coronavirus,” said Dr. Nate Favini, medical manager of Forward, a primary care practice that collects data on patients with the disease. of coronavirus across the country. Inside the business community. “Sadly, there will be a small subset of people who do and these symptoms really become a chronic thing that you have to deal with for years to come.”

But patients with COVID-19 must be sick for at least six months to be diagnosed with chronic fatigue, and many have yet to hit that target. Even if they do eventually receive this diagnosis, however, no approved cure or treatment awaits them. Doctors are still struggling to understand chronic fatigue, which is often unpredictable and can bear a striking resemblance to other conditions like fibromyalgia.

Yet the pandemic has drawn renewed attention to chronic fatigue. This could mean better treatments in the future for those newly diagnosed – and for those who have struggled with fatigue for years.

Chronic fatigue: poorly explained and poorly treated

There is no test to confirm that a person has chronic fatigue syndrome.

“It’s very poorly explained and poorly handled,” Dr Frances Williams, rheumatologist and professor of genomic epidemiology at King’s College London, told Business Insider. She added: “The medical community still does not terribly accept the existence of such a thing.”

The Centers for Disease Control and Prevention estimates that up to 2.5 million Americans suffer from chronic fatigue syndrome, the majority undiagnosed. The disease costs the U.S. economy up to $ 24 billion a year in medical bills and lost income, the agency said. Data suggests that whites are more likely to be diagnosed with chronic fatigue than other races.

Doctors aren’t sure what causes chronic fatigue, but the syndrome can be triggered by infectious diseases like Lyme disease or the Epstein-Barr virus. Some patients may be ill for several years, while others never fully recover. Some may never be able to return to work at all.

Artur Widak / NurPhoto / Getty Images

Although researchers are just beginning to study the relationship between chronic fatigue and the novel coronavirus, they have past clues of SARS patients who were infected in 2003.

A follow-up study of SARS patients in Hong Kong found that 27% met the CDC’s clinical criteria for chronic fatigue syndrome four years after the onset of their illness. Another study of 109 SARS patients in Toronto found that more than half of patients had not returned to work due to persistent fatigue and weakness one year after discharge from the nursing unit intensive.

Some doctors suspect that patients with COVID-19 may also be out of work for long periods of time.

“One can predict – and this is a prediction – that a significant proportion of the population who were employed when they fell ill [COVID-19] Dr. Harvey Moldofsky, a professor emeritus at the University of Toronto who has studied SARS patients, told Business Insider. “Can you imagine the economic impact?

A link between the coronavirus and chronic fatigue

From what doctors know so far, blood clots may be one of the reasons some patients with COVID-19 feel tired.

“If people have a bunch of little clots in their lungs, it can continue to cause fatigue for a long period of time – even after the clots have cleared up – if there is damage to the blood vessels,” said Favini.

An aggressive immune response to the virus could also trigger inflammation in the body which damages healthy tissue.

“We believe that people’s basic immune systems predict who will suffer from chronic fatigue,” Dr Frances Williams, rheumatologist and professor of genomic epidemiology at King’s College London, told Business Insider. His research team is currently examining the link between the coronavirus and chronic fatigue syndrome in adult twins.

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Williams pointed to a 2018 study that showed how inflammatory molecules can predict chronic fatigue syndrome in patients with hepatitis C.

“Those who had the greatest reaction and who produced more inflammatory cytokines were the people most likely to suffer from chronic fatigue,” she added. “It seems very likely that is what we will find in COVID, but we do not yet know the answer.”

An overactive inflammatory response could alter the nervous system, causing loss of energy, muscle weakness, or difficulty concentrating or sleeping. Moldofsky’s 2011 study of SARS patients in Toronto found that the virus crossed patients’ blood-brain barriers, leading to long-lasting neurological problems that disrupted their sleep and cognition. The new coronavirus could work the same way.

“It’s an inflammatory disease that interferes with conduction of normal nervous system pathways,” Moldofsky said.

Dr Noah Greenspan, a physiotherapist in New York who works with long-term coronavirus patients, said he has seen many patients for whom just sitting or walking across a room causes their hearts to beat or blood pressure to drop. arterial. This is likely because the coronavirus disrupts their autonomic nervous system, he said, which regulates blood pressure, heart rate and body temperature.

“You’re going to heal as fast as your slowest system, and unfortunately the neurological system is one of the slowest systems to heal,” said Greenspan. “Until this inflammation goes away, you may not see the change.”

Understanding how to deal with post-COVID cases

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Oliver said she has found ways to make her dizziness, headaches and fatigue more manageable lately. Daily breathing exercises seem to help, as does taking a break whenever work gets stressful. She also tries to limit her social media activity to less than five minutes a day.

“I don’t get this fatigue – which they say is part of post-COVID syndrome – if I stretch too much, like I’m walking too much or talking too much,” she says.

Doctors say gentleness will be key to the recovery process for COVID-19 patients with symptoms of chronic fatigue.

“You have to go extremely slowly with COVID patients because sometimes they can feel perfectly fine during treatment or they can feel perfectly fine during activity, but if you go over the line they could be knocked out for a week after that, or they may have a flare in their symptoms, ”said Greenspan.

Sill, many patients have a hard time knowing when they have reached their limit.

“There’s no easy way to tell someone or predict their tolerance for exercise,” said Williams. “The best thing really is to listen to your body. If you know something has pushed you overboard in the past, then don’t repeat it. Do something active, but for less time or less forcefully. . “

The more doctors understand chronic fatigue, she added, the better they will be able to find ways to treat patients.

A few new investigations are already underway: In May, a coalition of scientists from the Open Medicine Foundation launched a multi-year study to see if COVID-19 was triggering chronic fatigue syndrome. Representative Jamie Raskin, a Democrat from Maryland, also co-sponsored a bill in Congress that calls for annual funding of $ 15 million until 2024 to support research into chronic fatigue cases linked to COVID.

Appropriate diagnosis would also help COVID-19 patients with long-term fatigue achieve better care.

“Rheumatologists on the whole aren’t interested in dealing with things that aren’t inflammatory, and we’re assuming it will be some sort of post-inflammatory condition,” Williams said. “It is up to us to determine where and who should help these people.”