When Nisreen Alwan was struck by a bout of coronavirus early on in the pandemic, she thought that the worst was over after four weeks of fever, muscle aches and abdominal pains.
Instead, Dr Alwan was at the beginning of what she calls cycles of long Covid that have been affecting her life ever since.
The university associate professor and mother of three has been largely working from home like the majority of the British population since the first national lockdown in March last year.
Juggling her studies, child-rearing and domestic tasks along with the debilitating symptoms has been a struggle. “I had started to feel better but then it came back again,” said the 46-year-old academic.
“It became a cycle where I felt like I was recovering but then it hits you again. After a while, you start recognising patterns and the triggers for symptoms, and you start to adapt your life to avoid the things that bring that feeling.
“I knew if I exerted myself too much, I would feel the effects and fatigue for a few days.”
Dr Alwan, a British-Iraqi scientist from the University of Southampton, is one of a rapidly growing number of sufferers of long Covid, a debilitating and devastating condition leaving those affected reporting symptoms many months after contracting the disease.
Scientists estimate there could be more than 300,000 people in Britain with the condition and 7 million worldwide.
The Office for National Statistics (ONS) and early research suggest that one in 10 people who contract Covid-19 will suffer long-term symptoms. Many fear the after-effects of the disease could last a lifetime and significantly shorten the lifespan of survivors.
Last week, a study by the ONS carried out with the University of Leicester laid bare the disastrous toll on those with severe coronavirus.
Nearly a third of those who recovered ended up back in hospital within five months and one in eight died. Many of the 47,780 patients in the study went on to develop heart problems, diabetes, and chronic liver and kidney diseases.
Yet the symptoms of those who suffer from long Covid initially went unrecorded by health authorities and are still often dismissed as psychosomatic. Their physical and mental anguish has been exacerbated by volleys of abuse on social media.
It was only when doctors, scientists, politicians and those on the frontline began experiencing long Covid themselves that the condition began to be taken seriously.
As Dr Alwan, an associate professor in public health, said: “Death is not the only bad outcome of Covid.
“When I first became sick and was not getting better within a week or two, there was no narrative to say what was happening.
“Other people posting their experiences on social media were a real lifeline and it was validating to read about other people describing patterns of symptoms.
“By last summer, it was well established that lots of people were going through this but we are still not measuring this in any way.”
Even a simple request from her 7-year-old daughter to go for a walk in a park to smell the flowers left Dr Alwan fearful of the after-effects on her health.
The morning after that outing in July last year, she wrote a blog post for the British Medical Journal.
“I went out for a 20-minute slow walk yesterday evening with my little girl, who was desperate to see the flowers on the way.
“My exercise capacity is still terrible, and I knew that by doing that I would pay the price the day after. Indeed, I woke up with the familiar chest heaviness and utter exhaustion, which gets worse by sitting at my desk to work.”
Long Covid, or long-haul Covid, is defined as coronavirus symptoms persisting for 12 weeks or more after infection. The symptoms are varied – there are thought to be more than 170, ranging from organ damage to fatigue and brain fog.
Long Covid's origins
Elisa Perego, an Italian doctor, first coined the term “long Covid” in May last year after she herself fell victim to the continued effects of the disease.
The World Health Organisation adopted the term three months after Dr Perego first mooted it. In the UK, long Covid was formally recognised in October last year with the announcement of a £10 million ($13.7m) funding package for research and the opening of the first of 81 dedicated clinics to treat long-Covid patients.
But cynicism is still rife despite the growing body of evidence from sufferers and scientists.
“The misinformation is a pandemic of its own,” Dr Alwan said. “That is why we need to get the information out about long Covid. Everything has become so binary and polarised. If you talk about long Covid now, you might get the response that you don’t care about the effects of lockdown, but those with long Covid are also feeling the effects of lockdown, school closures and the economic downturn.”
The damaging Covid information vacuum
She said that ignorance festered and burgeoned because of a lack of government information and analysis of long Covid.
“We are in a much better place now,” Dr Alwan said. “There are guidelines in the UK about not discriminating between people based on whether they had a positive test when they first had the infection.
“What is still missing from the picture is that long Covid is still not quantified in the same way as deaths, hospital admissions and positive tests are.”
Obtaining official recognition for long Covid largely came about through patient-driven campaigning and messaging on social media, said Dr Alwan. Long-Covid support groups have flourished, some now with more than 30,000 members.
Since October last year, guidelines for identifying long Covid, issued by the National Health Service and the National Institute for Health and Care Excellence, have been circulated among GPs and healthcare professionals.
Long Covid clinics have also made it harder to dismiss those complaining of symptoms as hypochondriacs, but Dr Alwan said a national database of sufferers and their symptoms would give doctors and healthcare practitioners greater expertise in treating patients.
“What was happening at the start – and may still be continuing to a lesser extent – was that people were being labelled as having anxiety because they were having these symptoms that were not understood,” she said.
“Anxiety is a big part of it but it is a vicious cycle because you are experiencing symptoms and then have the anxiety of not knowing what is going on and no one else knowing either.
“There is anxiety about what is happening now and what will happen in the future. For people like me who have people to care for, that is quite stressful.”
As a result of her own experiences, Dr Alwan, a specialist in maternal and child health, embedded herself in research on long Covid to better understand the symptoms.
The team she works with at the University of Southampton studies the long-term impact of Covid on 2,500 patients and has pioneered a saliva test less invasive than a nasal swab.
Honoured for long Covid awareness raising
Dr Alwan’s advocacy work to raise awareness of long Covid and the impact of socio-economic factors on the prevalence of the disease led to her being awarded an MBE this month for services to medicine and public health. In November last year, she was also named one of the BBC’s 100 Women, an annual accolade awarded to pioneers helping to bring about change in their communities.
“I was so honoured and grateful to be nominated,” she said. “I feel a huge responsibility to continue contributing to society in a meaningful way.”
But she has not been without her detractors. The abuse that has come her way as a result of her advocacy has dismayed her, leading her to write in frustration on Twitter last week: “Those of us in health and science who are constantly working, researching, analysing and talking about the pandemic risks and effects are tired too. We too want it all to end. We’re not enjoying this. The anxiety and burnout is enormous. Don’t shoot the messenger.”
Dr Alwan’s frustration stems as much from government messaging as it does from Covid deniers. She wants government officials to talk about long Covid figures and research in their daily briefings, rather than defining the disease in the binary terms of those who live or die from coronavirus.
Earlier this month, the all-party parliamentary group on coronavirus, led by the Liberal-Democrat MP Layla Moran, called on the government to recognise long Covid as an occupational disease, offer compensation to frontline staff who were unable to work because of the illness, and compile a national register of patients and symptoms. The group also wants long Covid sufferers to be prioritised for the vaccination programme.
Ms Moran told parliament: “We are concerned that the government’s focus on NHS beds as the primary metric by which danger is measured means that the public believe if they do not end up in hospital, it counts as a mild case of coronavirus.
“The problem is that a mild case of coronavirus can lead to long Covid – and there is nothing mild about long Covid.”
Andrew Gwynne, MP, who has said that long Covid has left him exhausted and unable to complete simple tasks, added: “I talk about the difficulties doing my job but what about the mechanic, the builder, the emergency worker, the teacher, the nurse – people who do not have the luxury of virtual participation?”
Dr Alwan said studies such as the University of Southampton’s, together with patient-led advocacy, would be critical to deciding government policy.
“The questions about long Covid are many,” she said, “such as what causes it, who is more vulnerable, how you can prevent it in the early phase from developing and what does it mean in terms of vaccination.
“Once you understand the mechanism, you can tell what the effective treatment will be.”