According to a new overview, the disease commonly referred to as “long COVID” may not be a syndrome, but possibly up to four different syndromes.
The result comes from a dynamic thematic review of available scientific evidence published by the National Institute for Health Research (NIHR).
The paper, Living with COVID19 draws on the latest expert consensus and published evidence, as well as patient experience.
It was the first edition of the NIHR Center for Engagement and Dissemination (NIHR CED), working towards a real-time knowledge base in an emerging field.
It is estimated that up to 60,000 people in the UK have long-term COVID.
Long COVID ‘May Be A Catch All Term’
The review found clear matches for a variety of recurring symptoms in people hospitalized for COVID-19 as well as people who had COVID-19 in the community.
Those who persisted COVID had problems with their respiratory tract, brain, cardiovascular system, and heart, kidneys, intestines, liver, and even skin.
The authors said that such a wide range of symptoms caused diagnostic uncertainty.
“We believe the term ‘Long COVID’ is used as a collective term for more than one syndrome, possibly up to four,” said Dr. Elaine Maxwell, who wrote the review.
She told a briefing hosted by the Science Media Center (SMC) that some patients have “classic post-critical disease symptoms” and others have “fatigue and brain fog in a way that is compatible with post-viral fatigue syndrome.”
A third group suffered “permanent organ damage from the virus” while another significant group described “a rollercoaster ride of symptoms moving around the body and not progressing steadily towards recovery”.
“We believe that the lack of differentiation between these syndromes can explain the challenges people face in believing and having access to services,” said Dr. Maxwell.
In turn, patients whose symptoms have not been managed and managed without an agreed definition of ongoing COVID, especially those who have not been hospitalized and have never been diagnosed, could have psychological implications, the review said.
Ongoing COVID ‘may take months’
Another notable feature of the ongoing COVID was a wide range of how long patients reported feeling unwell.
“People who are now asking for help and advice are told to recover within two to three weeks,” said Dr. Maxwell infection. ”
As part of the study, the NIHR CED held a focus group with 14 members of the Long COVID Facebook group, whose members include post-hospitalized and non-hospitalized people.
One of them, Joanna House, a climate change scientist at the University of Bristol, developed COVID-19 in March after she and her partner Ash helped an elderly neighbor who fell into his house and became infected with SARS. CoV-2 virus.
After 7 months, Jo and Ash continue to experience persistent COVID symptoms, including shortness of breath, fatigue, tachycardia, and brain fog.
They told the researchers that their experiences seeking help from health professionals were mixed and sometimes frustrating because they hadn’t been hospitalized and tested at the time.
“Without the formal recognition of the long COVID and the support that comes with it, we feel in limbo,” Jo told the researchers.
Urgent research needed
The review authors said the challenge now is to design research that integrates the needs of those with the disease into clinical care models and recognizes the social and psychological consequences of ongoing COVID.
Dr. Philip Pearson, a Northampton respiratory consultant, said the current lack of data on the ongoing COVID needs to be addressed “quickly”.
He told the SMC briefing, “I have patients and colleagues with post-COVID symptoms. I now need to know how to advise them.
“When a second wave starts, about the only things we can be sure of – there will be more recordings, there will be more ICU recordings and there will be more people looking at the longer term effects of Covid Infection.”
Candace Imison, assistant director of evidence and dissemination at NIHR CED, said the work was still ongoing and the website would be updated as new evidence emerges, including a major update in January or February 2021.
She added, “I am also pleased to say, as you are likely to know, that the importance of this topic is picked up elsewhere. So NICE is currently developing a quick guideline for this group of patients, which hopefully should be available by the end of the year. ”
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