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Oct 16, 2020 – The condition commonly called ‘prolonged COVID’ may not be one syndrome, but possibly up to four, according to a new review.
The finding comes from a review of scientific evidence published by the UK’s National Institute for Health Research (NIHR).
The article, Living with COVID19, is based on the most recent expert consensus and published evidence, as well as patient experience.
It is estimated that up to 60,000 people in the UK can have COVID for a long time.
Long COVID ‘may be a blanket term’
The review found clear consistencies for a wide range of recurring symptoms among people who had been hospitalized for COVID-19, as well as those with COVID-19 in the community. Those who had ongoing COVID-19 had problems with the respiratory system, the brain, the cardiovascular system, and the heart, kidneys, gut, liver, and even skin.
The authors said that such a wide range of symptoms created uncertainty in the diagnosis.
“We believe the term ‘prolonged COVID’ is being used as a whole for more than one syndrome, possibly up to four,” said Elaine Maxwell, author of the review. Maxwell is a clinical advisor to the center.
She told a briefing organized by the Science Media Center (SMC) that while some patients experience “classic symptoms of post-critical illness,” others report “fatigue and mental confusion in a way that is consistent with post-viral fatigue syndrome.”
A third group experienced “permanent organ damage caused by the virus,” while another significant group “describes a roller coaster of symptoms that move through the body and do not constantly progress toward recovery.”
“We believe that the lack of distinction between these syndromes may explain the challenges that people have in being believed and accessing services,” said Maxwell.
Patients who were unable to address and treat their symptoms in the absence of an agreed definition of ongoing COVID, particularly those who were not hospitalized and were never previously diagnosed, may in turn find a psychological impact, according to the review.
Ongoing COVID ‘can last for months’
Another notable feature of ongoing COVID was a broad spectrum of time that patients reported feeling unwell.
“People who ask for help and advice are now being told to recover in 2 to 3 weeks,” Maxwell said, “but we hear from people who are still unable to work, study, or care for their dependents 7 months after their initial infection As part of the study, the NIHR CED held a focus group with 14 members of the Facebook group Long COVID, whose members include people who had been hospitalized and people who had not.
One of them, Joanna House, a climate change scholar at the University of Bristol, developed COVID-19 in March after she and her partner, Ash, helped an elderly neighbor who had fallen in their home and was infected. with the virus.
After 7 months, both Jo and Ash continue to experience ongoing COVID symptoms, including shortness of breath, fatigue, a fast heartbeat, and mental confusion.
They told the researchers that their experience of seeking help from healthcare professionals had been mixed and, at times, frustrating because they had not been hospitalized and had not been evaluated at the time.
“Without a formal recognition of the long-standing COVID and the kind of support that would come with it, we felt in limbo,” Joanna House told investigators.
Urgent investigation is needed
The review authors said the challenge now was to design research that integrates the needs of those with the condition with clinical models of care and that recognizes the social and psychological consequences of ongoing COVID.
Philip Pearson, MD, a respiratory consultant from Northampton, UK, said the current lack of data on ongoing COVID needs to be addressed “quickly”.
He said at the SMC briefing: “I have patients and colleagues with post-COVID symptoms. I need to know how to counsel them, now.
“When a second wave starts, the only things we can be sure of: There will be more admissions, there will be more ICU admissions and there will be more people dealing with the long-term effects of the COVID infection.”
Candace Imison, NIHR CED Associate Director of Evidence and Dissemination, said work was ongoing and that additions to the website would be made as new evidence emerges, including a major update in January or February 2021.
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