The National Institute for Health and Care Excellence (Nice) has given long COVID an official diagnosis.
Up to half a million former coronavirus patients in the UK alone are said to be enduring lingering complications after testing negative for the infection.
With the coronavirus only identified at the end of 2019, doctors were somewhat stumped when it came to spotting long COVID patients, who have reported symptoms ranging from fatigue and heart palpitations to brain fog and even signs of organ damage.
NHS England and NHS Improvement therefore commissioned Nice, a health watchdog, to develop diagnosis and treatment guidelines for long COVID.
Read more: Long COVID may trigger skin symptoms
While treatment guidance is expected by the end of 2020, a report by Nice defines “post-COVID-19 syndrome” as “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”.
Watch: What is long COVID?
“Before we can effectively diagnose, treat and manage a condition, we need to know what we’re dealing with, so it’s encouraging to be making such rapid progress in this regard,” said Professor Martin Marshall, from the Royal College of GPs.
“The prolonged health effects that some patients experience after contracting COVID-19 can have a terrible impact on their lives, and as GPs, we want to do what we can to help them.
“Now we are clear about its scope, we can move forward in developing guidance, based on the latest evidence, to support GPs to deliver the most appropriate care and support to patients suffering with the long-term effects of COVID-19 [the disease caused by the coronavirus] in the community.”
The report COVID-19 guideline scope: management of the long-term effects of COVID-19 is a collaboration between Nice, the Scottish Intercollegiate Guidelines Network (Sign) and the Royal College of GPs.
The “living approach” will be “continuously reviewed and updated in response to a developing and emerging evidence base”, wrote the authors.
For now, the report defines an acute coronavirus infection as “signs and symptoms of COVID-19 for up to four weeks”. The NHS states a fever, cough, and loss of taste or smell are common coronavirus symptoms.
Early research suggests the coronavirus is mild in four out of five cases.
The vast majority of people who become seriously ill are elderly or have an underlying health problem, like heart disease or diabetes. Long COVID, however, is emerging even among people who had a relatively mild bout of the infection itself.
Nice has defined “ongoing symptomatic COVID-19” as “signs and symptoms of COVID-19 from four weeks up to 12 weeks”.
Post COVID syndrome, also known as long COVID, occurs when “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”, according to the report.
Read more: Long COVID may be four different syndromes
“It usually presents with clusters of symptoms, often overlapping, which can fluctuate and change over time and can affect any system in the body.
“Post-COVID-19 syndrome may be considered before 12 weeks while the possibility of an alternative underlying disease is also being assessed.”
The report’s authors have listed an array of potential symptoms, affecting everything from the heart and kidneys, to the eyes and skin, as well as “psychiatric problems”.
The report may help doctors identify patients, with the number of people affected by long COVID being somewhat muddled.
Scientists from King’s College London have reported one in 20 former coronavirus patients endure complications for at least eight weeks, while one in 45 is ill for at least 12 weeks.
In August, the King’s scientists – who oversee the app-based COVID symptom study – said up to half a million Britons may be experiencing long COVID symptoms.
The next month, the same team announced around 300,000 people have complications lasting more than four weeks, while 60,000 are still feeling the effects of the virus over three months later.
The report’s authors are investigating the prevalence of long COVID, as well as its risk factors and optimal treatment guidelines.
The exact cause of long COVID is unclear, however, it has been suggested the immune response triggered by the coronavirus may lead to lasting inflammation that can theoretically affect any part of the body.
The infection may also linger in pockets of the body after it has been cleared from the airways.
With the treatment guidelines yet to be published, patients are advised to rest as much as possible and pace themselves throughout the day.
“We understand long COVID is creating great distress and uncertainty for those affected, and the NHS requires the best available advice to support people effectively, even as we continue to seek to understand it,” said Safia Qureshi from Sign.
“The scope report is a first and vital stage in the production of a guideline which aims to identify symptoms and outline treatment options.”
Watch: Can you catch coronavirus twice?