What Is Long Covid?
Acute Covid-19 Infection
This is the NICE term used to describe the signs and symptoms of COVID-19 for up to 4 weeks, regardless of the severity of infection.
Ongoing Symptomatic Covid-19
This is the NICE term used to describe the signs and symptoms of COVID-19 from 4 weeks up to 12 weeks.
This is known as Long Covid.
Post Covid Syndrome
This is the NICE term used to describe the signs and symptoms that develop during or following an infection consistent with COVID-19, continue for more than 12 weeks and are not explained by an alternative diagnosis.
This is Long Covid.
What Is Long Covid
Long Covid is the term given to the ongoing signs and symptoms caused by SARS-CoV-2 infection.
It is generally used to indicate symptoms and clinical signs that remain unresolved for four weeks or longer. Symptoms of Long Covid can also appear some time after an asymptomatic infection.
Long Covid was coined by patients who challenged the early COVID-19 guidelines that stated people recovered from mild cases within two weeks. It is called other terms around the world such as Post-COVID-19, Post Covid Condition and Post-Acute Sequelae of COVID-19 (PASC).
Long Covid was first recognised by patients at the beginning of the pandemic when they noticed that symptoms such as those of pneumonia, chilblain like sores and many others were not resolving with time.
Research conducted by both patients and clinical scientists has since proven that the prolonged signs and symptoms of SARS-CoV-2 infection can include damage and dysfunction to all body systems and organs. Symptoms range from chronic loss of smell and fluctuating rashes to neurological and neuropsychiatric symptoms.
Some children living with Long Covid have also eventually received a new diagnosis of conditions such as Paediatric Acute-Onset Neuropsychiatric Syndrome (PANs), narcolepsy and organ damage.
There is no specific test or biomarker for Long Covid and diagnosis is generally by exclusion of other illnesses and syndromes. Some specific tests like a SPECT scan, however, can reveal Covid related damage, such as damage to the small vessels in the lung.
Many people living with the disease were previously fit and healthy. Scientists are currently working hard to discover biomarkers for Long Covid and there are a number of promising studies nearing completion.
NICE produced a rapid guideline on the management of Long Covid in November 2021.
They described Long Covid as the presence of signs and symptoms that develop during or following an infection consistent with COVID-19 which continue for 12 weeks or more and are not explained by an alternative diagnosis. This includes both ongoing symptomatic COVID-19 (from 4 to 12 weeks) and long term consequences of COVID-19 (12-weeks or more).
Long Covid Kids is referenced as a resource in this document.
Understanding Long Covid
The National Institute for Health Research (NIHR) second themed review on Long Covid stated there may be grounds to understand Long Covid as up to four syndromes with different underlying causes and treatment needs.
NIHR publishes second themed review on ‘Long Covid’
These could include:
• Long-term organ damage
• Post Viral Syndrome
• Post Intensive Care Unit (ICU) Syndrome
• Potentially an entirely novel syndrome separate from the others that could more specifically and uniquely be identified as ‘Long Covid’.
It is important to note that these long-term effects on health may coexist in the same person.
Post ICU syndrome
Post ICU syndrome is a well known
phenomenon in medicine and points to. the long-term impact of the intensive care experience on a patient. Doctors and researchers must distinguish the effects of Post ICU syndrome from the damage caused directly by Covid. They both can persist even after hospital discharge.
Most children do not need ICU treatment for Covid and related conditions, but this might happen in some cases, for example, with PIMS/MIS-C.
These syndromes are consistent with the experiences shared in the our Support Services.
It’s going to take years to understand the full impact of SARS-CoV-2 but there are many studies underway seeking to understand and track Long Covid in the UK and globally.
Please share our Long Covid information leaflet to help others access support.