As a recent Medical News Today feature has highlighted, an increasing number of people around the world have reported lasting illness following confirmed or suspected infection with SARS-CoV-2, the virus that causes COVID-19.
The symptoms involved — often extreme fatigue and fever — persist for many weeks or months after they are supposed to have disappeared.
This phenomenon is now often dubbed long COVID, and the people affected sometimes call themselves “long-haulers.”
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Besides explaining how the lingering symptoms have drastically reduced their quality of life, long-haulers also note that, more often than not, healthcare practitioners are at a loss as to how to provide support.
To begin to address this gap in primary care, some specialists have been drafting new guidelines for doctors.
In a BMJ webinar that took place at the start of September, six specialists from the United Kingdom and Germany came together to discuss the best approaches to the diagnosis, management, and prognosis of long COVID.
They were: Prof. Paul Garner, from the Liverpool School of Tropical Medicine; Prof. Nisreen Alwan, from the University of Southampton; Prof. Trish Greenhalgh, from the University of Oxford; Dr. Valentina Puntmann, from University Hospital Frankfurt; Prof. Nicholas Peters, from Imperial College London; and Prof. Tim Spector, from King’s College London.
As Dr. Fiona Godlee, the editor-in-chief of BMJ and chair of the session, noted: “While most people recover quickly and completely from COVID-19, growing numbers are finding that they haven’t simply snapped back into their pre-COVID lives. Instead, after what may have been only a mild initial illness, they are experiencing a range of troubling and sometimes disabling symptoms.”
“Breathlessness, cough, palpitations, exercise intolerance, mental and physical exhaustion, anxiety, depression, fatigue, inability to concentrate and brain fog are just some of the things being described,” she said.
Yet despite living with such life-altering symptoms for months, many people are unable to convince their doctors that they have long COVID, having never received a positive COVID-19 test result.
According to Prof. Greenhalgh — who specializes in primary care and also works as a general practitioner — the requirement for proof of an infection with SARS-CoV-2 is the first thing that has to change if patients with long COVID are to receive any support.
In a BMJarticle she co-authored in August, Prof. Greenhalgh and colleagues had already emphasized this point: “Since many people were not tested, and false-negative tests are common, we suggest that a positive test for [COVID-19] is not a prerequisite for diagnosis.”
Highlighting that there is an “absence of agreed definitions,” she and her team suggested that a helpful approach might be to think of “post-acute COVID-19 as extending beyond 3 weeks from the onset of first symptoms, and chronic COVID-19 as extending beyond 12 weeks,” regardless of any test results.
Dr. Puntmann, a specialist in cardiology, spoke of the links between COVID-19 and inflammation of the heart muscle, called myocarditis, which seems to be a long-term effect of infection with SARS-CoV-2.
Prof. Garner, a specialist in infectious diseases, says that he himself is living with long COVID, an experience that he had already described in BMJ.
In the webinar, he emphasized that “Navigating help is really difficult,” and even that “Dealing with [long COVID] is a full-time job,” adding that “We need to be realistic about the time that is needed for convalescence.”
Both Prof. Garner and Prof. Alwan, who specializes in public health and previously had long COVID, noted that fatigue is a very common and often debilitating symptom of the prolonged disease.
For many, Prof. Garner included, trying to get back to work and return to the regular rhythm of activity has impeded their recovery. This is why the experts advised that careful self-pacing is more helpful than trying to force recovery.
Prof. Garner says that he began to understand this when a friend told him to “Stop trying to dominate this virus, [and] try and accommodate it [instead].”
“You have to drop by 90% from what you were doing before. You are a different person, and you have to be very careful about overdoing it, because as soon as you overdo it, you throw yourself back into bed and [feeling] unwell.”
– Prof. Paul Garner
Prof. Spector, a genetic epidemiologist and the lead researcher of the COVID Symptom Study, estimated that around 60,000 people in the United Kingdom have symptoms of COVID-19 that have lasted for more than 3 months.
He also said that the data available to him and his team suggest that long COVID is “twice as common in females as in males” and that it may manifest differently depending on a person’s age.
However, Prof. Spector claimed that based on the information that he and his team have compiled, they might be able to predict with about 75% accuracy who will develop long COVID, which may help efforts to prevent it.
Speaking of managing this long illness, Prof. Greenhalgh went on to say that while people living with long COVID primarily manage their symptoms on their own, there is much more scope for family doctors to offer support.
“[General practitioners] can actually manage most of these patients in general practice,” she explained, “using the clinical skills that [they] already have, and those clinical skills are things like: listening to the patient, documenting when the illness started, documenting what the symptoms are and how they’ve changed and how they fluctuate […], being alert to symptoms that might suggest that the patient needs referring [to various specialists].”
Prof. Greenhalgh noted that its is important for family doctors to keep on “maintaining […] relationship-based care,” which requires “hearing the patient’s story” and following its development to see if the person’s health improves.
If it does not, then general practitioners ought to direct their patients to respiratory clinics or cardiology clinics, depending on the most prominent symptoms, Prof. Greenhalgh explained.
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