Data from the Covid Symptom Study app, downloaded more than three million times, suggests a “significant number” of people report symptoms for a month. Between one in 10-20 report complications for longer than that.
These individuals, who have come together to form Facebook groups and share their stories, have been described as “long-haulers”, and the reasons behind their continued suffering remains a mystery to both themselves and the doctors treating them.
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Nearly four months have passed since Helen Ducker, a bakery owner from Bolton, was first struck down and hospitalised with Covid-19. She says that the experience will haunt her forever – “I watched two people die on that ward,” she tells The Independent – but her battle with the disease, it seems, is far from finished.
To this day, Helen is continuing to tackle the fallout from her initial infection. Some mornings she can barely get out of bed, laid low by aching muscles and “debilitating” fatigue. Her mind often feels heavy and clouded – “brain fog,” as she describes it – making it hard to hold conversation or speak at pace. And every now and again, her oxygen levels will plummet, the heart rate will rise and “intense”, piercing pains will explode across her chest.
“I’ve never known anything like it,” she says. “Day-to-day life has been completely hindered.”
Helen isn’t alone. She is one of thousands of patients whose symptoms have persisted well beyond the 14-day period that is said to be the average length of the illness.
In Helen’s case, countless tests, assessments and hypothesis have been made. The 40-year-old mother of two already suffers from Crohn’s disease and rheumatoid arthritis – both of which, as inflammatory conditions, could play a role in her ongoing complications. But at this stage, there are few explanations out there to explain what is happening to her body.
“The doctors don’t know what to do with you,” she says. “It’s headaches, brain fog, pains all over your body, pins and needles and numbness in your arms, legs, hands and feet. Then there’s the fatigue. I’m used to the fatigue with my Crohn’s and arthritis but I’ve never known fatigue like this. It’s debilitating. It’s like walking through quick sand.”
Helen has also been forced to start reusing an inhaler that she hadn’t touched in years – a likely outcome of what doctors suspect to be permanent lung scarring.
“I was told when I first went in that I had healthy lungs,” she says. “I’ve got what you’d call extremely mild asthma. I didn’t use my inhalers but now I’m on it constantly and there could be long-term damage to my lungs. Once they’ve been scarred it’s difficult to fix that. I was told by the respiratory consultant that there isn’t anything he can give me to treat it.”
The concern for people like Helen, and those with similar experiences, is how long this state of half-life continues for.
“It’s a constant fear you’re going to be stuck like this,” she says. And this is just one question among many: What will the long-term damage be? What is driving the persistence of symptoms in some patients? How can recovery and rehabilitation be improved?
Although there are no clear answers available, leaving the pandemic’s silent sufferers in the dark, work has now begun on providing some clarity on the long-term effects of Covid-19, after extensive campaigning within parliament and the health sector.
It was announced last weekend that the government is providing £8.4m in funding for the PHOSP-COVID study, a UK-wide consortium led by researchers at the University of Leicester, that will investigate the long-term health outcomes of the disease.
Around 10,000 patients are expected to take part, making it the largest study of its kind in the world, while expertise will be drawn from a wide range of leading researchers and clinicians who will come together to adopt an “holistic” approach in attempting to decipher SARS-CoV-2.
Only those who were hospitalised with the disease will be eligible to take part. Although many of the current “long-haulers” may never have been admitted to hospital, those who were are likely to provide “the quickest answers to our questions”, says Chris Brightling, a professor of respiratory medicine at the University of Leicester and the study’s chief investigator.
“If we found that people who were in hospital and had been really sick are getting back to normal after six months, that says to me that it’s unlikely there’s going to be as big a burden of the disease in the community as we think there might be,” he tells The Independent. “But whereas if we get clear signals in the people who have been hospitalised, and we get a list of groupings of problems and the kind of scale of that, then it gives us something to hunt for and do case finding in the community.”
Recruitment will take place over the course of the next year, but patients will be asked to make their electronic health data available to access for 25 years. The majority of the research, however, will be conducted over the next 18 months from clinical centres based across the country. After an initial assessment, some participants will be retested after three months, six months and then 12 months, depending on their conditions and progress.
No stones will be left unturned. From the lungs and the heart to the kidneys and the brain, all organs affected by SARS-CoV-2 will be tested, scanned, imaged and analysed by the relevant specialists. There will be questionnaires to fill out, allowing patients to detail their symptoms and complications. Cognitive functioning, anxiety levels and PTSD will also be measured. Data and results will then be shared between different teams and pooled together to build a clear and full picture of how the body’s various systems respond to and interact with the virus.
Participants might be asked to take part in additional, more detailed research projects depending on their conditions.
“If there’s a subset of patients that are developing fibrosis, we might contact them again and ask to do more in-depth studies, give more samples, take a spirometer home and measure breathing,” Louise Wain, the GSK/British Lung Foundation chair in respiratory research and a professor at the University of Leicester, tells The Independent.
Helen Ducker has been in and out of hospital three times since first testing positive for Covid-19 (Helen Ducker)
The PHOSP-COVID teams will also develop trials of new strategies for clinical care, including personalised treatments for groups of patients based on the particular disease characteristics they display.
“It’s going to be extremely comprehensive,” Brightling says. “We’re casting the net very wide as recognise that we simply don’t know what’s happening in people post-Covid.”
John Geddes, a professor of epidemiological psychiatry at the University of Oxford, who is involved in the study, said the research will allow scientists to gain “a much fuller picture” of what is going on.
“The importance of this study is that it’ll look across the whole body and look at how multiple body systems are affected,” hells The Independent. “By getting an insight into this, we’ll be able to work out what it is that makes some patients more likely to get these negative outcomes and that, in turn, will lead us to interventions that can be used to treat those individuals.”
The government’s current funding is set to expire after 18 months, but researchers are “already planning for this to be longer term”, says Brightling. “If there is a big problem, we’d be looking to follow people up for a number of years.”
As for those long-haulers looking for answers, it’s likely some preliminary data will be released in three months’ time. “I expect we’ll be releasing numbers of how many patients have lung abnormalities, pulmonary vascular issues, renal problems – all those things I expect we’ll be releasing in three months, but it’s hard to say at this point,” says Wain.
In the meantime, Helen and many others are left to soldier on, fighting this great “unknown” with little understanding of what is going on and why. “I’ll think I’m starting to see the light at the end of the tunnel but then I’ll get another week like these past few weeks where I’ve been floored again,” she says. “It’s so up and down. It’s bizarre.”
