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
There is mounting evidence that COVID-19 is a vascular disease, not a respiratory disease as originally thought. COVID-19 isn't a seasonal virus and with infections occurring all year round it is now clear that reinfections are common. The term 'Long COVID' evolved in the earliest days of the pandemic when we were reassured that despite being highly infectious, most people fully recovered from infection after about two weeks. It was quickly apparent that people of all ages from all around the world simply didn't. Being a brand new virus that the world had never seen before, our Long COVID communities remain thankful that The World Health Organisation acknowledged these men, women and children and recognised their patient-made name way back in August 2020, a mere few months after the pandemic began. Long COVID is essentially an umbarella term which has been adopted across the world as reference to the symptoms and clinical signs that remain unresolved for 12 weeks or longer. It can be considered from 4 weeks in the absence of any other explanation. Referred to as post acute sequelae of COVID-19 or post-COVID syndrome in the medical community, signs and symptoms can wax and wane and can also appear some time after an asymptomatic infection. Research conducted by both patients and clinical scientists has proven that the prolonged signs and symptoms of SARS-CoV-2 infection can include damage and dysfunction to all body systems and organs including the brain and heart. People of any age living with Long COVID can go on to receive concurrent diagnoses of other conditions caused by viruses and infections such as, but not limited to: - Postural Orthostatic - Tachycardia Syndrome (PoTS) - Dysautonomia - Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) - Paediatric Acute-Onset Neuropsychiatric Syndrome (PANs) - Functional Neurological Disorder (FND) - Organ damage This is of little surprise given that post-viral and post-infectious chronic illness are not new phenomenons. 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-19 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. The National Institute of Clinical Excellence (NICE) 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.