Resources
What is COVID-19?
Coronavirus Disease 2019 or COVID-19 is caused by a coronavirus called SARS-CoV-2. Some people who are infected with COVID-19 have no symptoms, but more commonly, people have symptoms consistent with an acute respiratory infection. COVID-19 infections can range from mild to severe and resolve within 2-3 weeks.
What is Long COVID?
For some people who become infected with COVID-19, the symptoms can persist well beyond the initial viral infection: this is called Long COVID. Persistent “long-haul” complications can cause physical, cognitive, functional, and psychosocial challenges. Long COVID symptoms can continue for weeks, months, or years, and get better or worse over that time. They can even go away for a while, only to return later. Scientists are working to better understand how and why Long COVID affects people.
Experts differ on how long symptoms should persist to be diagnosed as Long COVID. The United States Centers for Disease Control and Prevention (CDC) classifies symptoms as Long COVID if they persist for over four weeks. The World Health Organization (WHO) states that Long COVID involves COVID-19-related symptoms that persevere for three months or more.
Long COVID occurs in at least 10% of acute COVID-19 cases, with incidence estimated to be 10-30% of non-hospitalized COVID-19 cases, 50-70% of hospitalized cases, and 10-12% of vaccinated cases. However, most Long COVID cases occur in patients who were not hospitalized and had mild acute illness, which is representative of most COVID-19 cases.
Long COVID is also known by the following names:
- Post-Acute Sequelae of COVID-19 (PASC)
- Post-Acute COVID-19: Symptoms extending beyond 3 weeks
- Chronic COVID-19: symptoms extending beyond 12 weeks.
Researchers and doctors are working to better understand Long COVID. The causes remain unclear, but researchers believe multiple causes are responsible for Long COVID symptoms []. Possible sources of Long COVID symptoms include residual damage from the acute infection; persistent inflammation, immune response, and immune dysregulation; blood clotting in the body’s microvasculature; unbalanced gut microorganisms; dysfunctional signaling and inflammation in the nervous system; ongoing, low-grade viral replication; and worsening of a previously hidden condition.
Long COVID impacts multiple tissues and organs including heart, lungs, pancreas, immune system, gastrointestinal tract, the brain, kidneys, spleen, liver, blood vessels, and the reproductive system.
To learn more about Long COVID, check out these videos:
What are the symptoms of Long COVID?
Symptoms of Long COVID include:
- Cough and/or shortness of breath
- Fatigue
- “Brain Fog” – inability to focus, plan, understand, form a coherent stream of thought, and/or having abnormally fast/slow thoughts
- Loss of taste or smell
- Sleep issues
- Emotional and behavioral changes
- Depression or anxiety
- Diarrhea and stomach pain
- Muscle and joint pains
Photo by Aiony Haust on Unsplash
Impact on Daily Life
The consequences of Long COVID extend far beyond physical health. Many sufferers report significant disruptions to their daily routines, employment, social interactions, and overall quality of life. The unpredictability of symptoms often makes planning difficult, compounding feelings of anxiety and isolation. Recognizing these challenges is crucial in fostering empathy and support within communities and workplaces.
What are the treatments for Long COVID?
Research into the direct management of Long COVID is limited. Many patients recover spontaneously over time. The current treatment goal for Long COVID patients is to address symptoms and provide support during the recovery period.
Photo by Laurynas Me on Unsplash
- Gradually increase your physical and/or mental activity over time.
- Practice self-pacing. Rest when tired, break tasks down into smaller parts and rest in between those parts.
- Adjust your expectations to fit your current abilities.
- You may need to modify exercise (yoga, meditation, stretching) and manage stress.
- Consider a physical rehabilitation plan and/or referral.
Photo by Febrian Zakaria on Unsplash
- Consider a cognitive rehabilitation plan, referral, or online cognitive remediation program.
- Practice breathing exercises such as pursed lip and diaphragmatic breathing to improve respiratory symptoms.
- If you are experiencing loss of taste or smell, consider trying “smell therapy” at home using common household scents that are familiar to you. This involves using different scents and smelling them while also thinking of what they smell like.
- Plan ahead: make a schedule for physical, mental, and social activities.
- Accept help, such as with errands, meal preparation, and grocery delivery services.
- Use resources locally in your community and on online COVID-19 communities.
- Body Politic: https://www.wearebodypolitic.com/covid19
- #ME Action: Long COVID & ME: Understanding the Connection – #MEAction Network
- Survivor Corps Post-COVID Care Centers — Survivor Corps
- AHRQ Long COVID Care Network AHRQ Long COVID Care Network | Agency for Healthcare Research and Quality
- Attend to your general well-being. Get plenty of sleep each night, limit alcohol and caffeine, and stop smoking.
- Follow a well-rounded diet including 4-5 servings of fruits and vegetables per day. Drink 60-70 ounces of water per day, unless advised otherwise by your doctor.
- Start a symptom diary to help identify what makes your symptoms better or worse.
- A home blood pressure cuff can be helpful in monitoring increased heart rate and/or dizziness.
- A home pulse oximetry can be helpful in monitoring breathlessness.
- Take over-the-counter (OTC) pain medicine to help ease pain and reduce fever.
- If applicable, take supplements and prescription medications as ordered by your doctor.
COVID Vaccination
Some patients have reported improvement in “long-haul” symptoms after vaccination, while others have experienced some regression (typically short-term). Research is ongoing to better understand why this happens.
Note about Reinfection and Your Immunity
The CDC notes that if a person has fully recovered from COVID-19 and is retested within three months, they may continue to have low levels of the virus in their body and test positive for COVID-19, even though they are not spreading COVID-19. Having a positive COVID-19 test after an infection doesn’t mean you can’t be reinfected. It’s not yet known how long natural immunity lasts after being infected with the virus.
Moving Forward
Photo by Emma Simpson on Unsplash
As we navigate the evolving landscape of the COVID-19 pandemic, long COVID remains a significant concern that demands attention for the medical community, policymakers, and society at large. Continuing research is imperative in uncovering the mechanisms behind long COVID and developing effective treatments.
We invite you to stay connected with us a we follow the latest developments on long COVID and promising treatments. Together, through understanding, support, and collective action, we can face the challenges posed by Long COVID and work towards solutions that alleviate suffering and improve quality of life for those affected.
Interested in being part of the solution? Enroll in clinical trials: https://classic.clinicaltrials.gov/
If you or someone you know is struggling with symptoms of long COVID, reach out to healthcare professionals and support networks. You are not alone.
Coming soon…
Empowering the Long COVID Community
For Patients
Long COVID Clinics
AHRQ Long COVID Care Network | Agency for Healthcare Research and Quality
Where are the long COVID clinics? (sciencenews.org)
The EDS Clinic: Virtual Care for Ehlers Danlos Syndrome, Mast Cell Conditions, POTS
Post-COVID Recovery Care (phsa.ca) – Canada
Self-care tools
Treating ME/CFS and Fibromyalgia (treatcfsfm.org)
Visible – Activity tracking for Long Covid and ME/CFS (makevisible.com)
Online Brain Retraining Course
Symptom Management – Long Covid Support – UK
Support Networks
Research and Upcoming Trials
Home – Solve ME/CFS Initiative (solvecfs.org)
What is Long COVID | RECOVER COVID Initiative
Long COVID – Household Pulse Survey – COVID-19 (cdc.gov)
Patient Led Research Collaborative – for Long COVID (patientresearchcovid19.com)
Disability
Importance of Functional Limitations for Disability Claims | DisabilitySecrets
COVID-19 Longhaulers Legal Resource Center | Kantor & Kantor, LLP (kantorlaw.net)
CPET and EEG Disability Testing | Workwell Foundation
Supporting Employees with Long COVID: A Guide for Employers (dol.gov)
Guidance for Healthcare Professionals on Providing Medical Evidence for Disability Claims
Guidance for Healthcare Professionals on Return to Work for Patients with Long COVID (fom.ac.uk)
For Providers
Quick Reference for Clinicians
Caring for People with Post-COVID Conditions | CDC
ESCMID rapid guidelines for assessment and management of long COVID – PubMed (nih.gov)
Management of Mental Health Symptoms Associated with Long COVID
R3 Seminar Series | RECOVER COVID Initiative
Claim (CPD/CEU/CME) Continued Professional Development credits – Canada
Advocacy
August 3, 2024- Practical Approaches to Long COVID: Naturopathic Medicine, Nutrition
July 25, 2024- Practical Approaches to Long COVID: Cardiology, Occupational Health