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NIHR calls for consensus on diagnosis for ongoing COVID-19

Members of the Long COVID Support Group who made a video highlighting their concerns
15th October 2020 about a 3 minute read

A new report highlights an urgent need to address the issue of ongoing COVID-19 as those developing the illness long-term face a significant psychological and social impact.

The National Institute for Health Research report Living with COVID-19 notes there is little research into the number of people at risk of developing ongoing COVID-19 as attention has focused on the acute illness generated by the virus.

Part of the problem is that there is no consensus on diagnostic criteria for ongoing COVID-19. If there were it would enable much needed support to go to those affected and enable services to plan better. 

Researchers found a common theme is that symptoms arise in one physiological system, then improve, only to reappear in a different system. 

One-stop clinics

The report recommends support in the community should be considered alongside hospital one-stop clinics. And social support needs to take account of the financial pressures on people off work for long periods. 

It adds that marginalised groups such as care home residents, ethnic minority communities, travellers, the homeless, those in prisons, and people with mental health problems or learning difficulties are rarely included in research. 

Case studies quoted in the report include Lee, an opera singer, who contracted COVID-19 in February 2020. He told researchers: “I currently feel I am living in a COVID cycle of symptoms (fever, cough and metallic taste), extreme fatigue and brain fog, then a few days of normality.” 

He adds that he has been helped by the Long COVID Support Group which has 20,000 members on Facebook. Researchers held a focus group with some members to gather their views. 

One theme that emerged was how the public perception of COVID-19 was either it was severe enough to need hospital admission or mild enough to recover quickly and not require support.

Study participants said the denial that there was a ‘third path’ left them not knowing when to seek help. One commented: “I think the message to avoid hospital and the GP unless you had specific symptoms was very unhelpful, particularly as I didn’t have, and never have had, a cough or fever.”

Another individual who had received Continuous Positive Airway Pressure (CPAP) oxygen therapy assumed it would take three weeks to recover. So she was dismayed that she was still unable to work months later. 

Members of the Long COVID Support Group made a video highlighting their concerns

The report notes that while post-hospital care is important, the British Society of Rehabilitation Medicine has highlighted that there are people who were never admitted to hospital but who still have ongoing needs for rehabilitation support after recovering from COVID, or COVID-like symptoms, suggesting that care models need to be tailored specifically to COVID-19.