October 16, 2020 – The condition commonly known as ‘long COVID’ may not be a syndrome, but may be up to four, according to a new review.
The conclusion comes from a review of scientific evidence published by the UK’s National Institute for Health Research (NIHR).
The paper, Living with COVID19, draws on the latest expert consensus and published evidence as well as patients’ experiences.
It is estimated that as many as 60,000 people in the UK may have long COVID.
Long COVID ‘Can Be a Catch-All Term’
The review found clear consistencies for a wide range of recurrent symptoms among people who had been hospitalized due to COVID-1
The authors said that such a wide range of symptoms created diagnostic uncertainty.
“We believe the term ‘long COVID’ is being used as a catch for more than one syndrome, possibly up to four,” said Elaine Maxwell, the author of the review. Maxwell is the clinical advisor at the center.
She told a briefing hosted by the Science Media Center (SMC) that while some patients experience “classic post-critical illness symptoms,” others reported “fatigue and brain fog in a manner consistent with postviral fatigue syndrome.”
A third group experienced “permanent organ damage caused by the virus,” while another important group “describes a roller coaster of symptoms that move around the body and do not steadily develop toward improvement.”
“We believe that the lack of distinction between these syndromes may explain the challenges that people face in being believed and accessing services,” Maxwell said.
Patients who were unable to have their symptoms treated and treated in the absence of an agreed definition of ongoing COVID, especially those who were not hospitalized and never previously diagnosed, may in turn encounter a psychological impact, he said. the review.
Ongoing COVID ‘can last for several months’
Another notable feature of ongoing COVID was a broad spectrum in how long patients reported feeling uncomfortable.
“People who ask for help and advice now are told they have to recover within 2 to 3 weeks,” Maxwell said, “but we heard from people who are still unable to work, study or take care of relatives 7 months after their first infection. “As part of the study, the NIHR CED held a focus group of 14 members of the Long COVID Facebook group, whose members include people who had been hospitalized and people who were not.
One of them, Joanna House, an academic in climate change at the University of Bristol, developed COVID-19 in March after she and her partner, Ash, helped an elderly neighbor who had fallen into his home and was infected with the virus.
After 7 months, both Jo and Ash continue to experience COVID symptoms, including shortness of breath, fatigue, rapid heartbeat, and brain fog.
They told the researchers that their experience of seeking help from health professionals had been mixed and at times frustrating because they had not been hospitalized and had not been tested at the time.
“Without formal recognition of long COVID and the kind of support that comes with it, we feel in limbo,” Joanna House told researchers.
Demanding research is needed
The review authors said the challenge now was to design research that integrated the needs of those with the state of clinical care models and that recognized the social and psychological consequences of ongoing COVID.
Philip Pearson, MD, a breathing consultant from Northampton, UK, said the current lack of data on ongoing COVID needed to be addressed “quickly.”
He told the SMC briefing: “I have patients and colleagues with post-COVID symptoms. I need to know how I can advise them now.
“As another wave begins, just about the only things we can be sure of – there will be more footage, there will be more ICU footage, and there will be more people dealing with the long-term effects of COVID. infection. “
Candace Imison, associate director of evidence and dissemination at the NIHR CED, said work was underway and additions to the site would be made as new evidence emerged, including a major update in January or February 2021.