Long Covid is defined as ongoing, newly acquired health problems experienced after having COVID-19.
Some people with Long Covid may be experiencing symptoms of organ damage. It is important to work with your doctor for treatment.
The term Long Covid is new, but the common Post-Covid conditions are not.
Long Covid is not rare. The CDC reports that 1/5 adults develop a Post-Covid condition after inter initial infection.
Some people recover, while others experience chronic illness.
1. Definition of Long Covid
Not long into the pandemic, many people reported that they were not recovering as expected. For some, the symptoms are disabling and for some they are more mild. The community started referring to themselves as “Covid Long Haulers.”
The Centers for Disease Control and Prevention (CDC) and World Health Organization (WHO) differ on the time frame used to diagnose Long Covid, with the CDC stating four weeks and WHO stating three months.
It is important to note that symptoms may be new onset following initial recovery from an acute COVID-19 episode or persist from the initial illness. Symptoms may also fluctuate or relapse over time.
“Post-COVID conditions are a wide range of new, returning, or ongoing health problems that people experience after first being infected with the virus that causes COVID-19. Most people with COVID-19 get better within a few days to a few weeks after infection, so at least four weeks after infection is the start of when post-COVID conditions could first be identified. Anyone who was infected can experience post-COVID conditions. Most people with post-COVID conditions experienced symptoms days after their SARS CoV-2 infection when they knew they had COVID-19, but some people with post-COVID conditions did not notice when they first had an infection.”
“WHO has developed a clinical case definition of post COVID-19 condition by Delphi methodology that includes 12 domains, available for use in all settings. This first version was developed by patients, researchers and others, representing all WHO regions, with the understanding that the definition may change as new evidence emerges and our understanding of the consequences of COVID-19 continues to evolve.”
“Post COVID-19 condition occurs in individuals with a history of probable or confirmed SARS CoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms and that last for at least 2 months and cannot be explained by an alternative diagnosis. Common symptoms include fatigue, shortness of breath, cognitive dysfunction but also others and generally have an impact on everyday functioning. Symptoms may be new onset following initial recovery from an acute COVID-19 episode or persist from the initial illness. Symptoms may also fluctuate or relapse over time.”
A negative test does not exclude COVID-19 infection
In August 2020, a study was published in the Annals of Internal Medicine reporting that PCR lab tests taken on the day of symptom onset had a median false-negative rate of 38%. Meaning that it missed 38% of COVID-19 infections.
A study published in the Lancet in May 2021 found that lab PCR tests did NOT detect COVID-19 90% of infected children.
A large study published in January 2022 found that rapid tests do not meet the sensitivity criteria of both the FDA and World health organization, with an overall sensitivity rate of 64%. The rapid antigen tests failed to detect the virus in 36% of infected children.
“While some do recover, there are many Long Haulers who have been severely ill since the ‘first wave’ of COVID in early 2020.”
2. Common Symptoms
For many, Long Covid symptoms come in flares. There is a worsening, relapsing, and reoccurrence.
• Worsening of symptoms after any mental, emotional, or physical activity – sometimes delayed by hours or days. See: Post Exertional Malaise
• Severe exhaustion, fatigue, and / or muscle weakness
• Cognitive symptoms such as confusion, difficulty retrieving words, poor working memory, spatial instability, and disorientation or “Brain Fog”
• The inability to be upright. See: Orthostatic intolerance
• Heart palpitations
• Low blood pressure and / or high heart rate
• Shortness of breath and / or wheezing
• Light & sound sensitivity
• Internal vibrations, shaking, tremors
• Body pain, tingling, pins and needles
• Stomach pain
• Rashes, itching, red eyes
• Reoccurring fevers
• Sore throat and / or sniffles
• General sense of being “unwell
+ and more
3. Associated Syndromes
CDC Recognized Post-Covid Conditions:
“Patients with Post-COVID conditions may share some of the symptoms that occur in patients who experience:
• Myalgic encephalomyelitis/chronic fatigue syndrome
• Post-treatment Lyme disease syndrome
• Mast cell activation syndrome.
Symptom management approaches that have been helpful for these disorders may also benefit some patients with post-COVID conditions (e.g., activity management (pacing) for post-exertional malaise).”
– Centers for Disease Control and Prevention
System-based conditions reported following SARS-CoV2 infection via CDC
Prolonged illness following viral outbreaks has been recorded throughout human history.
According to the CDC, your doctor can diagnose Long Covid using the PASC diagnostic code after four (4) weeks of illness. Due to SARS-CoV-2 RT-PCR and antigen testing availability and sensitivity, patients do not need to provide proof of previous infection.
WORK WITH YOUR DOCTOR
We want to stress the importance of exploring other possible conditions and causes of symptoms with your care team. The Centers for Disease Control & Prevention and The American Academy of Pediatrics has information for doctors on the assessment, evaluation, and testing for patients with Long Covid symptoms.
Doctor assessment for Long Covid >
5. Long Covid can be Disabling
Long Covid can be a disability under the ADA, Section 504, and Section 1557 if it substantially limits one or more major life activities. Major bodily function, such as the functions of the immune system, cardiovascular system, neurological system, circulatory system, or the operation of an organ can occur.
Guidance on “Long COVID” as a Disability Under the ADA, Section 504, and Section 1557
ACCOMMODATIONS IN SCHOOL
Schools are required by law to provide reasonable accommodations and modifications to students who have disabilities. Learn about ways for helping children with Long Covid succeed in school.
SUCCEEDING IN SCHOOL >
WORK ACCOMMODATIONS & DISABILITY
The financial burden of being chronically ill can be a significant source of stress. We discuss common ways that people with Long Covid obtain income: Job Accommodations, Private Disability, and Social Security Disability.
Read first hand experiences from those impacted by Long Covid and Post Covid Conditions.
Long Covid Families collects related research for our community, separated by topics and updated regularly.
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