Authors: Abigail Sawyer, Future Science Group
A recently published review, ‘Living with COVID’, details the most up-to-date information surrounding ongoing COVID-19 symptoms – often termed long COVID – from expert consensus, published evidence and lived experiences.
The National Institute for Health Research’s (NIHR) Centre for Engagement and Dissemination has published a review capturing the latest knowledge and views on the long-term effects of COVID-19 infection.
Key findings include that ongoing COVID-19 may be up to four different syndromes; symptoms will commonly arise in one physiological system, subside somewhat, then reappear in a different system; there is a need for a working diagnosis of long COVID; it cannot be assumed that those at low risk of severe consequences from COVID-19 are also low risk for ongoing COVID.
The review details that similar findings are being reported by a number of small surveys, demonstrating that a range of recurring symptoms are experienced by both post- and non-hospitalized patients. Research surrounding ongoing COVID is still at an early stage, however, symptoms in the respiratory and cardiovascular systems, as well as the brain, heart, kidneys, gut, liver and skin have been reported.
There appears to be no pattern to the symptoms, which can vary in intensity and duration, leading to uncertainty with diagnosis. The review suggests it is crucial to formulate a definition and working diagnosis for ongoing COVID to provide much-needed support for those patients.
It is also possible that such a wide range of symptoms could point to responsibility for ongoing COVID in up to four different syndromes – Post Intensive Care Syndrome, Post Viral Fatigue Syndrome, Long Term COVID Syndrome and permanent organ damage.
The recommendation leading on from this review is that there should be a focus on designing new research models to integrate lived experiences with clinical care, as it was discovered that – bar one or two exceptions – much of the commissioned COVID-19 research focuses only on one symptom or physiological system, as opposed to the entire patient experience.
“This review highlights the detrimental physical and psychological impact that ongoing COVID is having on many people’s lives, and how healthcare services have at times struggled to manage these new and fluctuating patterns of symptoms and problems,” explained review author Elaine Maxwell (NIHR’s Centre for Engagement and Dissemination).
“While research is at an early stage, listening to the testimony of people living with the ongoing effects of COVID-19 provides rich insights into where we should focus future research, as well as the services we should be commissioning now.”