Long COVID
With a multitude of symptoms ranging from chronic fatigue to shortness of breath, Long COVID is a challenging diagnosis. Our Long COVID specialists are up to the task and aim to provide comprehensive, up-to-date care in multiple settings. Whether you are looking for an individual provider, a multi-disciplinary clinic, access to clinical trials or support, UCHealth is here for you.
What is Long COVID?
Long COVID is defined as persistent or new symptoms lasting 4 or more weeks following confirmed or suspected COVID-19 infection. Symptoms are often complex and can involve multiple body systems. In addition, symptoms tend to fluctuate over time.
It is also known by other names including Post-Acute Sequelae of SARS-CoV-2 (PASC), Post-Acute COVID Syndrome, Long Haul COVID and others. Long COVID has been recognized as the preferred terminology as it acknowledges patient's preference and voice.
Impact of Long COVID disease in Colorado
- Between 5-30% of COVID-19 survivors in the United States develop Long COVID.
- An estimated 16.8 % of Coloradans have experienced Long COVID.
- Approximately 6.4% or 374,000 Coloradans are reported to be currently suffering.
Nearly half of those who have experienced Long COVID have had to either take time off from work or school. Reduced work hours and loss of employment are also common.
What are Long COVID symptoms?
Symptoms of Long COVID vary widely from person to person, but can include:
- Fatigue/Weakness*
- Sleep disturbance
- Shortness of breath
- Memory impairment or brain fog
- Anxiety/depression
- Chest pain/tightness
- Headache
- Loss of taste and smell
- Fast heart rate/palpitations/lightheadedness**
*Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a biological illness affecting many body parts. It causes severe fatigue not improved by rest, problems thinking and sleeping, dizziness, pain and many other symptoms. It often follows a viral infection though other triggers have been reported.
*Post- Exertion Malaise (PEM) is a delayed worsening of symptoms that occurs after physical or mental activity. The key feature of PEM is that malaise (extreme fatigue and flu-like symptoms) is not in direct correlation to the amount of activity that was done.
**Postural Tachycardia Syndrome (PTS also known as POTS) is a circulatory disorder characterized by (1) A specific group of symptoms that frequently occur when standing upright (2) A heart rate increase from horizontal to standing of at least 30 beats per minute in adults. PTS is sometimes diagnosed by a tilt-table test.
What are the risk factors for Long COVID?
There are many risk factors for developing Long COVID, with some better characterized than others. Further investigation is required. These include:
- Severity of initial COVID 19 infection (especially those requiring intensive care and/or mechanical ventilation), this includes patients who felt quite ill but stayed at home.
- COVID-19 re-infection.
- Underlying medical conditions such as COPD, obesity, anxiety and depression increase the risk of long COVID due to the link of these conditions with inflammation and suppressed immune response.
- Socioeconomic status such as age, sex, ethnicity and access to healthcare:
- Vaccination status (higher risk if not vaccinated)
- Age (higher risk for those 65 or older)
- Female sex
- Ethnicity (Hispanic and Latino more likely to develop)
Prevention
Preventing COVID-19 illness reduces risk of developing Long COVID.
• Staying up to date on COVID-19 vaccine.
• Getting COVID-19 treatment and preventive medication, if eligible.
• If you are more likely to get very sick from COVID-19, don't delay on getting care. Treatment must be started within 5-7 days after your symptoms first develop.
• Treatment for acute COVID with antiviral medications may reduce the severity of acute COVID symptoms.
• Practicing good hygiene.
• Covering cough and sneezes, washing hands with soap and water, sanitizing hands often with at least 60% alcohol, cleaning high touched surfaces frequently.
• Taking steps for cleaner air.
• Being outside in fresh air and bringing as much fresh air into your home as possible, purifying indoor air, having gatherings outside when possible.
• When having indoor gatherings, set the fan to the "on" position instead of "auto" when having visitors.
• Change your filter in your HVAC system every three months of according to the manufacturer's instructions.
• Use a portable high-efficiency particulate air (HEPA) cleaner.
Evaluation and management
Long COVID can be diagnosed based on suspected infection, so a confirmatory COVID test is not required. There is no diagnostic test for Long COVID. Because it can affect multiple organ systems, evaluation is often tailored to patient's symptoms. An important part of Long COVID evaluation is ruling out other causes of symptoms or treating more identifiable medical conditions. Patients can improve over time; our goal is to help you get there.
Our clinicians provide a systematic evaluation of each patient’s condition and can make recommendations for further diagnostics and treatment. At the core of our approach we assess for injury related to initial COVID-19 infection, evaluate for underlying conditions that may be exacerbating symptoms, and come up with novel strategies for managing this complex disease.
Long COVID support group
This group is designed to provide credible information and resources to those who are suffering from long COVID, as well as their family, friends, etc.
A typical meeting looks as follows:
5:30 p.m.- Disclaimer, goals of group, identity and vision.
Presentation on designated topic for the month.
Introductions and ground rules for breakout sessions.
Breakout into groups-personal stories/support.
Wrap up breakout groups-one take away from the group and what can we learn more about?
7:30 p.m.- End of Meeting.
What to bring to the meeting:
- Note pad and pen/pencil.
- Drink and/or snacks.
- Support person who may benefit from the meeting.
- Signed HIPPA confidentiality forms.
Ideas of questions that may be asked during the breakout section of the meeting:
- How has long-term COVID impacted your daily life and routines? Are there any specific challenges you've faced as a result?
- Can you share a moment or experience where you felt particularly supported or understood by someone regarding your long-term COVID journey?
- Have you encountered any misconceptions or misunderstandings from others about long-term COVID? How have you navigated or responded to these situations?
- Are there any coping strategies or self-care practices that you've found helpful in managing the physical and emotional aspects of long-term COVID?
- In what ways has supporting a loved one with long COVID affected your own work, social life or other commitments? How have you balanced these competing demands?
- What has given you the most hope or motivation to continue supporting your loved one through their long COVID journey?
- What has been the most meaningful or rewarding aspect of supporting your loved one during this time?
- What advice would you give to others who are just beginning to support a loved one with long COVID?
For information about our Long COVID support group, please visit our classes and events page.
For questions, please email: [email protected]
Preparing for your appointment
Due to the complex nature of Long COVID it is important to prepare for your appointment.
- Make sure you have a comprehensive list of symptoms and top concerns you want addressed at the appointment .
- Bring a list of current medications and supplements, including dosage.
- Bring any medical records from outside of UCHealth for review. If you have had imaging performed outside of UCHealth please make sure this has been sent in advance (imaging report alone may be inadequate).