Patients should be allowed to self-diagnose ‘long Covid’, Government researchers have said, amid concerns sufferers are not being believed.
The call accompanies the publication of new findings suggesting the condition is not a single syndrome, but potentially as many as four.
NHS chiefs believe hundreds of thousands of people are suffering long-term after-effects of Covid-19, including breathlessness, chronic fatigue, ‘brain fog’, and anxiety.
A new study funded by the National Institute for Health Research (NIHR) has found the chances of developing long Covid symptoms were not necessarily related to the severity of infection with the virus.
This is one of the reasons why many patients are struggling to persuade doctors they are suffering from a genuine condition, the researchers said.
Dr Elaine Maxwell, from the NIHR, said: “People asking for help and advice now are being told they should recover within two to three weeks, but we heard from people who are still unable to work, study or care for dependents seven months after their initial infection.”
She added: “We believe that the term long Covid is being used as a catch-all for more than one syndrome, possibly up to four.
“And we believe that the lack of distinction between these syndromes may explain the challenges people are having in being believed and accessing services.”
Dr Maxwell said the emerging evidence shows that some people are suffering classic post-critical illness symptoms, for which rehabilitation services are crucial.
Meanwhile, others are suffering from fatigue and brain fog similar to other post-viral syndromes.
There is also evidence of permanent organ damage in some patients, particularly damage to the lungs and to the heart.
A further group have debilitating symptoms which do not fit any of these categories.
Crucially, the symptoms associated with long Covid are “non-linear”, the researchers said, meaning they can start to get worse months after the initial infection.
The early evidence also suggests that being fit and healthy does not protect patients who have caught Covid-19 from long-term effects.
Dr Maxwell said the Defence Medical Rehabilitation Centre was seeing ongoing effects in “previously very fit young service personnel” who caught the virus in March.
“We feel it is important not to narrow down the definitions too early and potentially exclude many people who are suffering,” she said.
“We suggest the NHS consider creating a working diagnosis and account using all electronic clinical records to capture any person who presents to any NHS service with a self-diagnosis for long Covid.”
Last week, NHS England announced £10 million for a series of long Covid treatment hubs.
Sir Simon Stevens, chief executive of NHS England, said the number of sufferers could be in the hundreds of thousands.
The new research was based on interviews with both hospitalised and non-hospitalised Covid patients.