What Is a COVID Long-Hauler?

By the end of February 2022, nearly 60% of the U.S. population had SARS-CoV-2 (the virus that causes COVID-19) antibodies indicating they had been infected with COVID-19. Even for those who recover, SARS-CoV-2 poses serious long-term physical and mental challenges.

According to the Centers for Disease Control and Prevention (CDC), 1 in 13 adults in the U.S. (7.5%) become COVID "long-haulers," or people whose COVID-19 symptoms last three or more months after they've been infected.

Not a lot is known about COVID long-haulers at the moment. Both people with severe cases of the disease and those who only have mild symptoms can become long-haulers. The prolonged symptoms can vary from person to person. The medical community is still trying to sort out the causes of and risk factors for these long-lasting health issues from COVID-19.

Definition

The term "long COVID" came from the patient community. It was coined by archeologist Elisa Perego as a Twitter hashtag to describe her experience with the virus. The term "long haulers" was coined by Amy Watson in June 2020, who got it from a trucker hat she was wearing when she was first tested.

Since then, many organizations have created their own terms and definitions for the condition.

CDC Definition

The CDC defines long COVID as a range of new or ongoing symptoms people can experience four or more weeks after first being infected with the virus that causes COVID-19.

WHO Definition

The World Health Organization (WHO) labels post-COVID-19 condition (their term for long COVID) as a condition that is usually diagnosed after 3 months from the start of COVID-19, lasts for at least 2 months, and cannot be explained by an alternative diagnosis.

They go on to say that symptoms can be different from those experienced during an acute COVID-19 episode or persist from the initial illness.

Types of COVID-19 Long-Term Effects

The novel coronavirus is a versatile pathogen. It mostly impacts the respiratory system, but as infections have spread, it's become apparent the virus is capable of wreaking havoc on many other parts of the body.

COVID-19 is known to affect virtually every body system, including:

• Lungs
• Brain
• Heart
• Blood
• Kidneys
• Liver
  

Symptoms of Long-Haulers

Since COVID-19 can impact so many parts of the body, it can cause a wide range of symptoms. Long COVID is linked to more than 200 symptoms.

Even after the acute illness has passed, these symptoms can linger, affecting some—or all—of the same body systems. Symptoms can also change or reappear over time.

Breathing and Heart Problems

• Breathlessness
• Chest pain
• Chest tightness
• Cough
• Heart palpitations
  

Neurological Symptoms

• Brain fog
• Dizziness when standing up (lightheadedness)
• Headache
• Sleep problems
• Pins and needles feeling
  
• Loss of taste or smell
• Depression or anxiety
  

Digestive Symptoms

• Abdominal pain
• Acid reflux
• Constipation
• Diarrhea

Complications

Possible long-term COVID complications include:

• Inflammation of the heart muscle
• Lung function abnormalities
• Acute kidney injury
• Hair loss
• Smell and taste problems
• Sleep issues
• Difficulty with concentration and memory problems
• Changes in mood

Causes

Experts are still trying to understand why COVID-19 symptoms linger in some people but not in others. One theory hypothesizes that the virus probably remains in the bodies of COVID long-haulers in some small form. Another theory suggests that the immune systems of long-haulers continue to overreact even after the infection has passed.

Research also shows that people with pre-existing health conditions (such as COPD and asthma) and those with a previous Epstein-Barr infection are more likely than others to develop long COVID.

Diagnosis

Many COVID long-haulers never had lab confirmation of COVID-19, with only a quarter of respondents in another survey reporting they had tested positive for the disease. This contributed to skepticism that COVID long-haulers' symptoms are not real, and some have reported their persistent symptoms were not treated seriously. It's therefore important to speak up and ask your healthcare provider if you suspect you have prolonged symptoms of COVID, even if you have not tested positive before.

There is currently no test to diagnose long-term complications from COVID-19, but blood tests may help diagnose problems from long-term COVID complications.

The following blood tests may be ordered based on the symptoms you have:

• Brain natriuretic peptides: Elevations in the proteins measured in this test can indicate heart failure.
• Complete blood count: This can rule out anemia in a person who is short of breath and provide information about red and white blood cell counts. An elevated white blood cell count can signal an active infection. This test can also be used to reveal lymphopenia, a feature of acute COVID illness where a type of white blood cell called lymphocytes are reduced.
• C-reactive protein: This test detects the liver's response to inflammation in the body. This biomarker is usually elevated in people with COVID-19.
• Ferritin: This test can also be used to detect anemia or problems with red blood cells, as well as inflammation in the body.
• Metabolic panels: Basic or complete metabolic panels (CMPs) can be used to detect imbalances in minerals and electrolytes, as well as provide information on kidney and liver function. You may also have kidney or liver panels done, which collect much of the information from a CMP plus more about renal and hepatic function.
• Troponin: Elevated troponin levels can indicate heart damage or even a heart attack.

Your healthcare provider may also order tests like an electrocardiogram if there is concern for heart damage from COVID-19 or chest X-rays to monitor for any lung damage. The British Thoracic Society recommends chest X-rays should be done for people with significant respiratory illnesses that have lasted 12 weeks.

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Treatment

Just as there is no one way to diagnose long-haul COVID, there is no one treatment that can make all COVID symptoms go away. In some cases, particularly with lung damage, changes may be permanent and require ongoing care. Your healthcare provider may refer you to a respiratory or cardiac specialist after a difficult case of COVID or if there is evidence of permanent damage.

The needs of people facing long-term COVID complications are vast. People who were critically ill and required mechanical ventilation or dialysis may face ongoing health challenges as they recover. Even people with milder cases can struggle with ongoing fatigue, cough, shortness of breath, and post-traumatic stress disorder. Treatment is centered on the biggest issue you are facing that has the greatest impact on your ability to return to a normal way of life.

Your healthcare provider may recommend or prescribe these medications to support your recovery:

• Antidepressants or other medications to cope with anxiety
• Blood thinners
• Cardiac medications
• Cough suppressants or expectorants for a long-lasting cough
• Pain medications
• Steroids

Long-haul COVID problems are also addressed through supportive care. There are a number of things you can do to keep your body strong and healthy as it fights the virus and recovers. These include:

• Breathing exercises
• Eating healthy
• Exercising
• Mental health support or counseling
• Physical therapy
• Rehabilitation

Prognosis

Unfortunately, because long-term complications of COVID-19 are so new and research on them is still ongoing, it is difficult to say when ongoing symptoms may resolve and what the outlook for COVID long-haulers looks like. A majority of people with COVID-19 see their symptoms resolve in a matter of weeks. For those who have lingering problems that go on for months, there may be permanent damage that results in a chronic health condition. See a healthcare provider if your symptoms last for more than a few weeks, and they will help guide you in managing any ongoing health issues.

Coping

Coping with changes from prolonged COVID-19 symptoms may be the most difficult aspect of recovery. For young people who lived an active life, fatigue and a lack of energy can be hard to cope with. For older adults, new problems from COVID-19 could add to a number of existing conditions and make it even more difficult to function independently at home.

Ongoing support from family, friends, community organizations, online groups, and medical professionals can all help you deal with the long-term effects of COVID-19.

Two nonprofit organizations provide support specifically to COVID long-haulers:

• Survivor Corps offers information on post-COVID care and runs a Facebook page that connects people who survived COVID-19.
• Body Politic runs an online COVID-19 support group for people who tested positive for COVID-19, are experiencing symptoms, and are recovering from the illness. You can join by filling out a sign-up form. They also provide a list of resources on long COVID on their website.

There are many other financial and healthcare resources available to help people who have been infected with COVID-19, such as Benefits.gov.

A Word From Verywell

COVID-19 has impacted millions of people across the globe, and for some, it has brought new, permanent health challenges. COVID long-hauler symptoms can last for weeks and even months, or the virus could cause permanent damage to organs like your heart and lungs. The emotional toll of new health problems and the stress of quarantining can be difficult to cope with, but know that you are not alone. Family, friends, community services, and healthcare providers can all offer support in dealing with ongoing problems from COVID-19.

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.