Living with 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 sometime 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).

New or Ongoing Symptoms

Some people experience a range of new or ongoing symptoms that can last weeks or months after first being infected with the virus that causes COVID-19. Unlike some of the other types of post-COVID conditions that tend only to occur in people who have had a severe illness, these symptoms can happen to anyone who has had COVID-19, even if the illness was mild, or if they had no initial symptoms. People commonly report experiencing different combinations of the following symptoms:

Difficulty breathing or shortness of breath
Tiredness or fatigue
Symptoms that get worse after physical or mental activities (also known as post-exertional malaise)
Difficulty thinking or concentrating (sometimes referred to as “brain fog”)
Cough
Chest or stomach pain
Headache
Fast-beating or pounding heart (also known as heart palpitations)
Joint or muscle pain
Pins-and-needles feeling
Diarrhoea
Sleep problems
Fever
Dizziness on standing (lightheadedness)
Rash
Mood changes
Change in smell or taste
Changes in menstrual period cycles