Lingering and painful: the long and unclear road to coronavirus recovery

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People tell of symptoms coming and going weeks after falling ill, even in mild cases

Six weeks after first feeling unwell, Jenny* is still recovering from what she believes was Covid-19.

On 17 March she, like many others, began preparing for an expected lockdown in the UK, stocking up on supermarket essentials. She was feeling a little flushed – something she put down to a reemergence of cold-like symptoms from a few weeks before.

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World news | The Guardian

Six weeks after first feeling unwell, Jenny* is still recovering from what she believes was Covid-19.

On 17 March she, like many others, began preparing for an expected lockdown in the UK, stocking up on supermarket essentials. She was feeling a little flushed – something she put down to a reemergence of cold-like symptoms from a few weeks before.

Then the other symptoms began, including a runny nose, sneezing and phlegm. “At that time, everybody was saying that runny noses and sneezing were not symptoms of coronavirus so I still didn’t think I had it,” the 33-year-old said. “Then I started coughing.”

As the days marched on, other symptoms developed, including chest pains, shortness of breath and marks like dappled bruising on the feet – something Spanish doctors have suggested could be a sign of the disease.

“It really was like one thing after another,” Jenny said, adding that on attempting to get back to work, typing in bed, she developed muscle pains in her wrists.

Her flatmate also became ill – with symptoms including a fever and loss of taste and smell. Without testing, it is impossible to be sure, but it seemed highly probable that the cause of the illness in both flatmates was Covid-19.

Jenny still feels exhausted, with days of feeling better followed by setbacks. “I still don’t feel better because a few days ago I started shivering, like I got a chill somehow,” she said.

She is not alone: Fiona Lowenstein, a writer in the US, co-founded a group on the social media platform Slack for people who have experienced Covid-19 after it took her weeks to recover from being admitted to hospital with the disease.

Dr Andy Whittamore, a GP in Portsmouth and Asthma UK’s clinical lead, says that viruses are a trigger for asthma and asthma symptoms, and therefore it is fair to assume that coronavirus will act in the same way.

Health bodies around the world are listing asthma as a condition that might be considered high risk, but so far there is no evidence to suggest that having asthma increases the infection rate from the coronavirus. There is, though, some evidence that people who have asthma and catch the coronavirus are more likely to go on to have a more severe case of Covid-19. There is yet to be any data which shows how asthma impacts on the mortality rate from the coronavirus, but doctors are advising that people with the condition try to manage their asthma symptoms as best they can in case they catch the coronavirus.

Asthma is a condition of the airwaves, causing inflammation of the airwaves. It can lead to wheezing, coughing and a tight chest, and be triggered both by internal factors in the body, like levels of hormones, and external factors, like viruses, pollution and allergens. Colds and flu are considered a major trigger.

Many report waves of symptoms over a period of weeks – from heart palpitations to headaches, shortness of breath and fatigue.

In a survey of group members, 89% of the 465 respondents said they had symptoms that fluctuated in intensity and frequency; 23% had tested positive for coronavirus, taking on average just over nine days to be tested from the onset to symptoms; 28% tested negative and were, on average, tested after about 15 days; and just 3.5% were admitted to hospital, although 38% visited an emergency department.

With symptoms long-lasting, some members have concerns over whether they are still infectious.

A report published in February by the World Health Organization, based on preliminary data, suggested in mild cases, the median recovery time from Covid-19 is about two weeks from the onset of symptoms, and about three to six weeks for severe or critical cases.

But while severe Covid-19 may mean a long road to recovery, it seems even mild cases can, for some, involve many weeks of recuperation.

Alice* is still experiencing symptoms more than 50 days after first becoming ill. Based in the UK, the 51-year-old said she joined the Slack group after reading an article by Lowenstein in the New York Times, and that finding the group was a “big relief”.

From 11 March, Alice experienced consistent severe fatigue, chest pain and tightness, and a cough – but no fever. Other symptoms came and went in waves, including chills, insomnia and heart palpitations. “Day eight, nine, 10 was just really horrible, you are just concentrating on breathing and hanging in there,” she said.

It is like a storm. One day you have zero symptoms … then it will just go crazy and as quickly as it hits you it can go.

By week four she felt on the mend, and began some work and to exercise – but then relapsed. Eventually she went to A&E. But despite being put in one of the hospital’s “coronavirus pods”, and having various investigations, she was not tested for the virus, she said.

The symptoms continued to come and go, Alice said. “It is like a storm. One day you can have zero symptoms … then it will just go crazy and as quickly as it hits you it can go.”

Lauren Nichols, 32, from Boston, Massachusetts, is another member of the Slack group. She has tested positive for Covid-19 twice and still has symptoms more than 50 days after first feeling unwell. She said the experience was a rollercoaster of symptoms and severities.

“My biggest concern is that there is little visibility into the reality of what recovery truly looks like, as recovery from a medical perspective simply means that the patient ‘did not die’ and simply does not capture the lingering and painful symptoms that the Covid-19 recovery road truly entails for some or many,” Nichols said, adding that some of her most alarming symptoms occurred in her third and fifth weeks of being unwell.

“I am concerned that employers and governments are rushing the recoveries of thousands who are still in pain and still symptomatic, without understanding that this causes both mental and physical complications for people already in a very vulnerable and unwell state of being,” she said, adding that she was also concerned about the lack of support for those recovering.

Dr Michael Head, a senior research fellow in global health at the University of Southampton, said it was perhaps not surprising that some people had long recoveries. “Many people often take weeks to completely recover from pneumonia,” he said. “In these cases, the viral illness has typically long since subsided and thus it is unlikely the patient will be infectious.”

But it is unclear why some take longer than others to recover. “We know that recovery time after pneumonia is often influenced by the presence of co-morbidities and by age of the patient,” said Head. “Alongside that, many people will have undiagnosed co-morbidities, such as diabetes, also influencing how ill a patient becomes, and their recovery time.”

The Slack group survey found two-thirds of respondents had a pre-existing medical condition, mainly seasonal allergies or asthma.

Why there should be such variation in recovery time remains unknown, but a genetic element may play a part, said Dr James Gill, an honorary clinical lecturer at the University of Warwick and a locum GP. Preliminary work from King’s College London has suggested that genetic factors could account for about half of the variation in a number of key symptoms of Covid-19.

Gill said he was only seeing about two to three patients a week with long-lasting symptoms, suggesting the experience is not common, although he noted that without community-level testing to know who had had the virus, it would remain unclear how common a recovery path was.

But Gill said data from the Sars outbreak revealed that almost a third of those who had had that particular coronavirus still had a reduced tolerance to exercise many months later, despite having normal lung function. While Gill stressed that Covid-19 was a different disease, he said it could be that a similar proportion of about a fifth or a third of those with Covid-19 had lengthy recovery time .

Although symptoms may linger, it is thought an individual is unlikely to be infectious once three days have passed with no raised temperature, but coughing should be treated with caution, Gill said.

What recovery looks like is an evolving picture, he continued. “We are learning on a daily, weekly basis, things about how people are recovering from this, and we can’t know about the long-term impacts until we are in the long term.”

The only way to completely understand is by observation over the long term – and this includes recovery time. Prof David Heymann

Prof David Heymann, of the London School of Hygiene and Tropical Medicine, agreed with Gill. “Whenever a new virus that has come from the animal kingdom is identified in humans there is great concern about what is not known because humans do not have previous experience with this virus and the immune response it will cause,” Heymann said. “The only way to completely understand is by observation over the long term – and this includes recovery time from infection.”

With suggestions that some cases of chronic fatigue syndrome (CFS) may arise after illnesses including viral infections, Gill said concern was starting to mount.

“There are a lot of people wondering whether or not we are going to see an uptick in cases of chronic fatigue going forwards as a result [of Covid-19],” he said. “We don’t know that, but it is something that we are thinking may be possible.”

Carmine Pariante, a professor of biological psychiatry at King’s College London, agreed there could be a rise in people experiencing CSF-like syndrome. “We don’t know if this is going to happen with Covid-19 because we don’t have the follow-up data,” he said. “But the picture unfortunately, both in terms of the biochemical picture [of the immune response] and the acute fatigue, which is very prevalent, make us think it will be possible.”

Gill said it was important that those who had had a coronavirus infection or suspected Covid-19, had access to physiotherapists and nutritional advice.

Also helpful would be leaflets with advice on recovery, such as reminding patients to drink plenty of fluids and to do breathing exercises, said Gill, adding that some advice could be drawn from existing knowledge of other conditions.

Ultimately, it is important to take time to recover, he said. “If you have had coronavirus and you have been flattened by it, you have no get-up-and-go, and you are fatigued. You need to rest, and you need to go back to work – or doing whatever you do – in a step-wise progression.”

*Some names have been changed


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