The NHS is to offer ‘long Covid’ sufferers help at specialist centres, which is welcome news to the tens of thousands of patients affected by the debilitating long-term effects of this syndrome following an initial infection with Covid-19.
Long Covid is the term being used to describe the lasting effects of Covid-19 in people who have either recovered and then begun experiencing lingering symptoms, such as fatigue, breathlessness and brain fog, or who have had the usual symptoms for far longer than would be expected.
Many people who have been infected have been sharing their experiences in the media and through patient groups in a bid to open up the conversation about what it is like to be a Covid-19 ‘long hauler’.
A recent webinar hosted by the BMJ also attempted to shed some light on what we already know about long Covid, as well as what we don’t understand.
Professor Paul Garner from the Centre for Evidence Synthesis for Global Health, Liverpool School of Tropical Medicine, and co-ordinating editor of the Cochrane Infectious Disease Group, has personal experience of long Covid.
Speaking on the webinar, he described it as “like being battered repeatedly” and said he realised his symptoms were “out of the ordinary” after reading on the NHS website at the time that this would last two weeks – “but after six weeks I was still really unwell, and I certainly didn’t think at the time that I’d still be unwell at six months”.
Nisreen Alwan, associate professor in public health, University of Southampton, and honorary consultant in public health, University Hospital Southampton NHS Foundation Trust, is also in the midst of long Covid.
Her symptoms started in March, but she says it wasn’t until she read about Paul Garner’s experience of long Covid that her own felt “validated”, and she subsequently started writing about how to quantify and measure long Covid in the same way as death and infection.
The definition of long Covid is, she says, “not recovering several weeks or months after symptoms that were suggestive of Covid, whether or not you were tested”, with common symptoms including “cough, breathlessness, chest heaviness and pressure, skin rashes, palpitations, fever, headache and diarrhoea”.
Indeed, Trisha Greenhalgh, professor of primary care, Nuffield Department of Primary Care Health Sciences at the University of Oxford and a practising GP, also stressed that “it does not require a positive Covid test to be defined as having long Covid”, adding that what is evident to her as a GP researcher is that “lots of people who have had Covid and are not better haven’t had a positive test”.
Some compelling evidence for this came from Nick Peters, consultant cardiologist and professor of cardiology at Imperial College London.
In the first week of lockdown in March his team established a Covid patient questionnaire looking at wellbeing, which now includes some 20,000 respondents. In recent weeks they have answered specific questions about the longevity of symptoms and their recovery. “About 3,000 report thinking they have had Covid-19 and about 300 report symptoms lasting longer than two months,” he says.
Tim Spector, professor of genetic epidemiology at King’s College London, and leader of the Covid Symptoms Study, said of the 4 million people who have downloaded the symptoms app, “10 per cent had symptoms for over a month. We think there are about 60,000 people with symptoms lasting over three months”.
The study has also identified six clusters of symptoms and researchers have associated two of these with longer term symptoms, making it possible to predict who may then be at risk of long Covid.
“Persistent cough, hoarse voice, headache, loss of appetite and shortness of breath – but definitely not fever – in the first week indicate you are more likely to get longer term symptoms,” says Spector, “and then in long Covid, headache and fatigue are the most common symptoms, then persistent cough and shortness of breath.”
Pointing out other interesting findings, he says the app is telling us that: “Twelve days is the average duration of Covid and there are up to 19 symptoms associated with it, many of which are not on the Government’s list of symptoms needed to get a test.
Many people have not necessarily had fever or cough, [and] people with strong antibody responses seem to have longer long Covid symptoms. Those with acute fever who clear it quicker don’t seem to get longer term symptoms [and] long Covid is more common in females of all ages.”
There is clearly a wide spectrum of complaints in long Covid, with those with first-hand experience identifying a common denominator as its relapsing nature. “You feel you’ve recovered and then it hits you back,” says Nisreen Alwan. “It is a constant cycle of disappointment not just to you but family, friends and work colleagues. Anxiety about recovery is also a big feature – some people feel recovered for weeks and then symptoms start again.”
Navigating help is really difficult and there is “a desperate need” for good guidelines and advice for long haulers, says Paul Garner. “We need specialists working together in networks … and we need to be realistic about the time needed for convalescents. Someone who is 33 years old but still in bed with cardiac symptoms after three months is not going to be back at work in six.”
"We are now getting better at predicting who is going to get long Covid, which can help us with treatment plans,” says Tim Spector, but Trisha Greenhalgh believes the burden of recovery “is going to fall primarily on patients and on primary care”.
A group of 39 UK doctors1had already called for the establishment of one-stop clinics involving multidisciplinary teams to help the rehabilitation of patients experiencing long Covid before Simon Stevens’ announcement of specialist help.
“My own research into long Covid is showing that peer support is so helpful at reaching the parts that other interventions haven’t reached,” says Trisha Greenhalgh. “The research and clinical community need to be in partnership with the patients because they are the ones who know what is happening. It is about hearing the patient’s story and saying ‘I am with you on this journey’.”