What is long COVID?
There is no way to know how COVID-19 will impact you. While the majority who contract COVID-19 recover completely within a few weeks, many experience persistent symptoms – after their initial recovery – that last much longer. Numerous individuals around the world continue to suffer debilitating effects of the disease months or years after being infected with the virus. These individuals are considered to have a condition referred to as long COVID. Those struggling with the condition are frequently referred to as “long haulers.”
You may hear Long COVID referred to by various names, such as:
● post COVID conditions,
● long-term effects of COVID,
● long-haul COVID,
● post-acute COVID-19, or
● post-acute COVID syndrome (PASC), among others.
What are some of the symptoms of long COVID?
Researchers are still working to better understand long COVID. Long haulers are battling symptoms for not just days or weeks, but months. Everyone seems to react to the virus differently and will ultimately have various long-term effects and symptom severity. Some of the most common symptoms long haulers continue to experience are:
- Dizziness when standing
- Shortness of breath or difficulty breathing
- Sleep problems
- Memory issues
- Difficulty thinking or concentrating (Brain fog)
- Depression or Anxiety
- Post Traumatic Stress Disorder (PTSD)
- Body aches
- Joint or muscle pain
- Fast or pounding heart (heart palpitations)
- Loss or change in taste or smell
- Hair loss
- Diarrhea or constipation
- Stomach Pain
- Changes in menstrual cycles
- Symptoms that worsen after physical or mental activities (post-exertional malaise)
This list is not comprehensive, as studies have shown a prevalence of more than 200 reported symptoms amongst 10 organ systems. These symptoms can be experienced one at a time, or simultaneously. Over time, these symptoms can come and go, change, or new symptoms can occur.
In some adults and children, they can develop a serious condition called multisystem inflammatory syndrome (MIS) following their COVID-19 infection. This condition causes several organs to become inflamed. More severe cases of COVID-19 infection can also cause people to develop multiorgan effects or autoimmune conditions that can affect many body systems. This can cause damage to many organs including the lungs, heart, kidneys, and brain.
These symptoms can have a devastating impact on these individuals and their families. If you suspect that you, or someone you know, has Long COVID, talk to a doctor or a healthcare provider to discuss persistent symptoms and possible treatment options.
How common is long COVID?
Some studies⁴ and surveys with patients show that 31-67% of people continue to have symptoms up to six months (and some much longer) after they contracted COVID-19, even though the virus is no longer active. The American Academy of Physical Medicine and Rehabilitation (AAPM&R) has a long COVID dashboard that shows an estimate of how many people in the United States are currently struggling with the condition. Many of these people lived very active lifestyles prior to getting sick; hiking, traveling, regular exercise routines, and more. Now, months after initially contracting the virus, some long haulers say they are nowhere near returning to their familiar lifestyle.
Who is at risk for long COVID?
The cause of long COVID following a COVID-19 infection is not fully understood, and research is still ongoing to determine which individuals are at the highest risk. Long COVID can occur in anyone, including children and otherwise healthy individuals who were infected with COVID-19, regardless if the case was asymptomatic, mild, moderate, or severe.
Researchers have found that the condition is more likely to affect females, people with underlying health conditions, adults 40 and older, people of color, and people who did not get a COVID-19 vaccine. Individuals who were hospitalized with the virus also have a higher likelihood of developing long COVID.
Can I get long COVID if I have been fully vaccinated?
You can have symptoms of long COVID following a COVID-19 infection even if you have previously been vaccinated for COVID-19. However, a recent study showed that if you have been fully vaccinated, the likelihood of having symptoms 28 days or more after the initial COVID-19 infection is half that of someone who is not vaccinated.
Long COVID clinics
Ongoing research is helping us to understand the impact of long COVID on the body. Currently, there are no diagnostic tests for long COVID. Some individuals may also have a variety of symptoms that can come from other health problems, making it difficult for healthcare providers to recognize – and sometimes treat – long COVID. Many symptoms improve with time, while others may need medical intervention to facilitate progression.
Long COVID clinics provide a multidisciplinary approach to treat persistent symptoms that continue for more than 12 weeks following recovery from the initial COVID infection. These clinics include a group of health professionals with expertise in varying areas where symptoms can persist. Local clinics include:
Referral needed from Physician;
Fax: (801) 213-1147
No referral needed
Referral needed from Physician
Fax: (801) 475-2294
If you have health insurance, the treatment that these clinics provide may not be covered by the insurance company. Ask your insurance company about potential costs prior to treatment so you know what to expect.
The CDC provides excellent, updated information on post-COVID conditions and what to expect. These resources are for anyone, including those diagnosed with long COVID as well as healthcare providers treating those with the condition.
The Utah Strong Recovery Project offers free, daily assistance for those who have encountered stress related to COVID-19. Services include emotional support, crisis counseling, mental health education and coping strategies, and referral to additional services and professional help, if needed. All information is confidential and free of charge.
Utah Strong Recovery Project: (385) 386-2289
Individuals with chronic conditions, such as long COVID, can experience distress during their recovery. Support groups provide a safe space for people affected by COVID-19. This gives individuals the opportunity to discuss their circumstances and be given mutual support by those who share similar experiences. They are generally free of charge and offered weekly, or bi-weekly.
- The University of Utah College of Nursing offers a program called Caring Connections. There are two different support groups. The Grief Support Group is to accommodate those who have lost a loved one to COVID-19, or those who are grieving deaths that were disrupted due to the pandemic. The Recovery Support Group for those who are struggling with long COVID and need support in their recovery.
- Caring Connections COVID-19 Grief & Recovery Support Group: (801) 585-9522
- The Bateman Horne Center also offers support groups for those with long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia (FM), and other coexisting conditions. They also allow others who are supporters, loved ones, or caregivers to those struggling with those conditions. You do not have to be a patient of BHC to attend.
- BHC Support Groups for those with Long COVID
Some individuals with long COVID may have limitations in their daily activities and it can pose a significant health challenge. Long COVID does not always result in a disability. However, if long COVID substantially limits one or more major life activities, then it can be classified as a disability under the Americans with Disabilities Act (ADA) guidelines.
Returning to work after the initial recovery from the COVID-19 virus can be difficult, especially for those who live with long COVID. The U.S. Department of Labor has provided guidelines to support individuals who are returning to work with long COVID and for employers who have an employee with COVID-19 or long COVID that need workplace accommodations.
How can I connect with other long haulers?
There are several social media groups that connect people all over the world to discuss symptoms, experiences, coping mechanisms, and possible treatments. They have become a support group to each other and believe there is power in numbers to bring light to the severity of COVID-19. They welcome anyone to share their story and connect with others who have had similar experiences.
Facebook support groups:
- Utah COVID-19 Long Haulers (30+ days)
- Long Covid Support Group | Facebook
- Covid-19 Support & Recovery
- Survivor Corps | Facebook
- Long Covid Kids Support Group 🧡 | Facebook
Public awareness page:
Research and clinical trials
Research for COVID-19 is ongoing and essential to help us understand how long COVID affects different people, why it occurs, and how to treat it. Global research is currently underway, as well as several studies in the U.S.