Everything we know about possible long-term effects of COVID-19

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November 26, 2020
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Everything we know about possible long-term effects of COVID-19

Experts estimate that the United States alone could have hundreds of thousands of patients with long-term effects of COVID-19. These patients, often called “long haulers,” continue to see symptoms ranging from heart complications to rashes, causing researchers to seek answers down many different paths. Stacker has compiled 36 facts about “long haul” COVID-19 patients, from symptoms to demographics, using data from the Mayo Clinic, The Atlantic’s COVID Tracking Project, and new sources.

Many “long haul” COVID-19 patients have symptoms similar to chronic fatigue syndrome (CFS). They may have debilitating fatigue, brain fog, and even the same challenges that existing CFS patients face when trying to communicate their needs to doctors. Researchers believe many CFS cases come from a viral infection of some kind, and they’ve pointed out that diagnoses of CFS rise after almost all pandemic events.

SARS in particular has offered today’s researchers a way to begin understanding “long haul” COVID-19 patients. Do symptoms that last for months after initial COVID-19 infection necessarily last forever, or will they improve with time or treatment? Doctors must be ready to really listen to patients with these symptoms, but instead, patients have reported having difficulty being taken seriously. This is already a problem people who suffer CFS are familiar with. And research shows that women and minorities already face inferior medical care compared to white men, an issue that predates COVID-19 but has been highlighted during the pandemic and will continue to be a problem in its aftermath.

There are also overlapping effects from “long haul” COVID-19 in different body systems. The heart, for example, may be damaged by the way the virus works and then further weakened by autonomic changes to the heart’s rhythms and damage to the blood vessels. For patients who fear they’re experiencing “long haul” or resurging COVID-19 symptoms, the best idea is to talk to a trusted doctor as soon as possible in order to understand and mitigate harm. This could involve physical therapy, medical treatment, and more.

Read on to learn what we know about CFS and other potential long-term effects of COVID-19.

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“Long haulers” have fatigue

Mayo Clinic reports that people with “long haul” COVID-19 are likely to experience fatigue. This can range from low level, episodic fatigue to full-on chronic fatigue syndrome, doctors believe.

 

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Increased risk for cognitive illness

People who have contracted COVID-19 are more likely to get brain conditions like seizures, strokes, and Guillain-Barre syndrome. They may also be more likely to have cognitive illnesses like Alzheimer’s disease or Parkinson’s disease in the long term.

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Symptoms last four to five months

The group considered “long haulers” may have active symptoms for up to five months. Even after that, their recovery is often spotty and marked by setbacks.

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Fatigue and breathing problems

In a study of 143 released patients in Rome, 53% had fatigue and 43% had shortness of breath even after two months. Researchers believe this could be related to the lung damage and scarring that COVID-19 causes. The expected duration of a COVID-19 case that’s not “long haul” is about two weeks.

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“Long haulers” have chest pain

Patients with “long haul” COVID-19 infections report chest pain as one of their major lingering symptoms. “Long haul” cases tend to have been mild at first, so this pain is probably from lung damage and scarring rather than ventilator complications.

 

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“Long haulers” are mostly women

Emerging data on “long haul” COVID-19 patients suggests they may be mostly women. Researchers will have to do more work to understand why this is, but it has implications for how “long haulers” will be treated.

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“Long haulers” are young and healthy

The CDC finds that 1 in 5 “young and healthy adults” who caught COVID-19 ended up with prolonged problems afterward. The average age of those with “long haul” COVID-19 infections is just 44. That’s well below the age range considered highest risk for severe cases of COVID-19, and the set of symptoms is very different. The overall group is also healthier than average, with far fewer hospitalizations for their main symptoms.

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“Long haulers” have memory problems

People with “long haul” COVID-19 cases report much higher levels of memory problems, concentration problems, and sleep problems. Symptoms like “brain fog” and fatigue compound and leave many of these “long haulers” less able to work, for example.

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“Long haulers” have heart abnormalities

A study of COVID-19 patients in Germany found that more than three-fourths still had heart abnormalities up to three months and beyond after their original COVID-19 infection. Researchers don’t yet understand the extent of these abnormalities.

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Long term UK study to follow patients

The PHOSP-COVID study in the United Kingdom will follow the outcomes of 10,000 COVID-19 patients for a year. Researchers will take measurements and conduct tests to monitor how patients recover and bounce back during the year.

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“Long haulers” have aches and pains

Patients with “long haul” COVID-19 symptoms report high rates of muscle pain as well as headaches. Researchers tentatively believe this could be related to inflammation both during the initial COVID-19 symptoms and in the long tail of lingering symptoms.

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It’s not just chronic fatigue

People with “long haul” COVID-19 cases are presenting a huge variety of serious symptoms that fit with chronic fatigue syndrome, also called myalgic encephalomyelitis (ME/CFS). Researchers believe ME/CFS is often caused by viruses, and say there are typically increases in cases following pandemic events around the world. Symptoms can also mirror those of fibromyalgia, mast cell activation syndrome, and other chronic illnesses.

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“Long haulers” may lose hair

People with “long haul” COVID-19 symptoms can experience rashes or hair loss. Researchers don’t know yet if this is temporary or even medium term.

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“Long haulers” are many of the COVID-19 cases

Based on numbers of documented “long haul” COVID-19 cases today, there are “probably hundreds of thousands” of these cases just in the United States. As these patients pour into doctors’ offices for longer term medical care, they could create a secondary hospital crunch.

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Lung damage persists

A study of patients in Austria reported that lung damage dropped from 88% of patients after six weeks to just 56% after 12 weeks. That means more than half of the patients still had visible lung damage after three or more months.

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“Long haulers” have weaker blood vessels

Patients with “long haul” COVID-19 cases can have health problems caused by weakening of their blood vessels. This can cause long-term organ damage and should be taken very seriously.

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“Long haulers” experience pushback and gaslighting

Patients with “long haul” COVID-19 symptoms experience medical gaslighting. Women and especially women of color are likely to experience even more pushback.

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Ventilators can cause “long haul” symptoms

Patients who are hospitalized and end up intubated for ventilation can end up with “long haul” type symptoms just from the consequences of ventilation. This can include loss of muscle or nerve function that must be rebuilt over many months.

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“Long haulers” have chronic coughs

Patients with “long haul” COVID-19 symptoms report having persistent coughs for months after their initial infection. This is likely related to scarring of the lung tissue.

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“Long haulers” can feel emotional repercussions

People who have caught and survived COVID-19 by treatments like ventilation can develop post-traumatic stress disorder and other emotional consequences because of the nature of the illness and treatment. They may also be more likely to have depression or anxiety afterward.

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“Long haulers” can experience dysautonomia

People with “long haul” COVID-19 symptoms are likely to have symptoms collectively called dysautonomia. These include ripples through the digestive or circulatory systems that, in healthy people, operate almost totally unnoticed.

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“Long haulers” are doing research

In a patient-run survey of a major group of “long haul” symptom sufferers, almost 91% reported that they weren’t recovered 40 days or more after COVID-19 infection. The duration of average “milder” cases has hovered around two weeks.

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“Long haulers” have racing hearts

People with “long haul” COVID-19 symptoms are more likely to have a rapid or pounding heartbeat. This could be because of the way COVID-19 harms blood vessels or autonomic responses in the body.

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Patients have long term lung damage

A small study found that more than a third of its 33 subjects had visible scarring on their lungs. This research is likely to be followed by larger, more comprehensive studies of the prevalence of scarred lung tissue.

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Patients have damaged heart muscles

In images from months after their initial infections, many patients have damaged muscles of the heart that researchers believe could increase the long-term risk of heart failure. They found this result even among patients with “mild” cases.

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“Long haulers” don’t have test results

Due to fine differences in testing or even what markers are being used to test, people with “long haul” COVID-19 symptoms have often tested negative for the virus. This also varies depending on when they were tested, with as little as a few days’ difference changing testing outcomes.

 

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Patients’ ACE2 receptors are targeted

The COVID-19 virus targets a receptor called ACE2 that many body cells have. Researchers believe the targeted damage to this receptor is responsible for some of the body system damage that patients can experience.

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“Long haulers” may have pneumonia-related lung damage

Patients who end up with pneumonia, which is a common side infection with COVID-19, are likely to have lasting damage to the alveoli of their lungs. These tiny air sacs can become blocked or damaged, leading to reduced lung capacity and function.

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“Long haulers” may not have antibodies

One researcher studied 1,400 patients with “long haul” COVID-19 symptoms and found that two thirds got a negative result from an antibody test. Researchers believe this lack of antibodies could relate to the longer-term symptoms.

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Chinese study confirms lowered lung function

In a study of patients in China, 25% of patients still had lung symptoms after four months. Another 16% reported troubling fatigue.

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“Long haulers” have joint pain

People with “long haul” COVID-19 symptoms are likely to experience joint pain. This fits into a working theory of some researchers that the longer lasting symptoms are caused by inflammation.

 

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SARS studies could offer clarity

Researchers who study SARS and patient outcomes following that pandemic say that “long haul” COVID-19 patients could take lessons from SARS outcomes. This includes the same troubling amount of chronic fatigue symptoms.

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“Long haulers” get post-exertional malaise

People with “long haul” COVID-19 symptoms are likely to experience “post-exertional malaise,” which is a physical fallout from even minor activities or efforts. Scientists don’t understand this mechanism well in patients with or without COVID-19.

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“Long haulers” don’t feel heard

“Long haul” COVID-19 patients reported that they received conflicting advice, diagnoses, and other medical attention. They also said this confused or disbelieving messaging caused them to feel unsupported by their medical teams.

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“Long haulers” lose their taste

Loss of sense of taste is one of the most widely reported long-term symptoms of COVID-19. Patients can also lose their sense of smell.

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Some symptoms are difficult to pinpoint

Researchers aren’t sure yet which “long haul” COVID-19 symptoms are definitively caused by the virus or by interventions like ventilation. Patients could benefit from interventions that have more multidimensional support to help curb effects of intubation, for example.

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