Wide-ranging and often ‘bizarre’ symptoms can persist weeks and even months after first falling ill
Experts believe the long-term effects of Covid-19 have been underestimated
While the vast majority of those who contract Covid-19 will make a full recovery, there is increasing concern about a small but significant number of patients whose symptoms persist weeks and even months after first falling ill.
These long-term symptoms are often “bizarre”, say experts, and range from strange pains and fevers to debilitating headaches and lethargy. They can impact those who suffer only mildly from the disease initially and there may be a link with exercise and the recurrence of symptoms.
According to the latest research from King’s College London, around one in 20 Covid patients experience long-term symptoms for at least a month, sometimes longer.
One in ten still have symptoms after three weeks, despite the median time for recovery for most mild cases being around 14 days.
Professor Tim Spector of King’s College heads the team which has developed the UK’s biggest symptom tracking app and believes the long-term impact of the virus is being underestimated.
“The Government is telling people that this is just like the flu and only checking on a few symptoms, but it’s not at all like the flu,” he told the Telegraph. “For many people it can linger on; many people are saying they’ve had it for over three months now.”
Describing Covid-19 as one of the “strangest diseases I’ve ever come across”, Prof Spector is concerned that we are “underestimating” the virus by failing to collect comprehensive data on long-term, milder symptoms charted in the graphic below.
“There are people emailing me every day saying that no one is interested,” he said. “Nobody is giving any statistics on this and the Government isn’t collecting anything. Our app has been an alternative to this narrow view of the NHS 111 service, which if you ring up they only really talk about flu-like symptoms, but hopefully we are changing that.”
Calling the UK’s recent decision to add anosmia – loss of smell – to the official Covid-19 symptoms list “long overdue”, Prof Spector adds that breathlessness and fevers are also recurring symptoms in patients struggling with the “long tail” form of the virus.
Paul Garner, a professor of infectious diseases at the Liverpool School of Tropical Medicine, is one of those one in 20 people still experiencing symptoms – over eight weeks after first contracting the virus.
“Normally with viruses you’re ill for a few days and then you get better, but with this one it comes back at you and slaps you around the face time and time again with different symptoms,” he said.
Despite just feeling “a bit strange” and tired during the first two days of experiencing symptoms, Prof Garner’s symptoms quickly progressed to a tightness in his chest and shortness of breath.
“I thought I’d just sit it out. My friend, who is advising the Government, said to expect to be ill for around seven to ten days,” he said. “But it went on and on, and I had this incredible period where I actually thought I was dying. I was lying in bed and couldn’t lift my arms; I started passing out while horizontal; my heart was racing. And then two hours later I kind of woke up.”
Still experiencing symptoms over two months later, Prof Garner took to social media to find others who are still struggling with symptoms of the virus and quickly found that he was far from the only one. After writing a blog post for the British Medical Journal about his experience, he received a “tidal wave” of correspondence, with many people saying they thought they were going “insane”.
“All the focus was on people on ventilators, but there’s this huge chunk of people like me managing at home, largely unseen,” he said. “The other thing I noticed was that a number of people didn’t believe that they were ill, but then you talk to them and they are going through hell in their heads. They think they’re crazy. So people are very lonely with this bizarre illness.”
Drawing parallels between Covid-19 and chronic fatigue syndrome, Prof Garner warns against taking strenuous exercise on the road to recovery. “Every day I woke up with a headache, and then on day 44 I started to feel a little better. I did a little cycle, then a HIIT class online, and then I was in bed for the next week. I don’t think people are aware of this relationship to exercise.”
“We know that from ordinary pneumonia it takes people several months to get better,” he added. “I think the important thing from my side was how many people there are like me, who’ve been really quite unwell at home. And we aren’t even a case on Government statistics – I’m not even counted.”
How long to fully recover?
Just how long it will take for patients to fully recover from Covid-19 is something that rehabilitation experts remain, for now, largely in the dark about. The overwhelming consensus appears to be that, as the virus is new, we don’t yet know what its trajectory will be.
“We don’t fully know the long-term implications because this is a new disease,” said Professor Charlotte Bolton, a professor of respiratory medicine at the University of Nottingham. While stressing that the vast majority of Covid-19 patients will recover fairly promptly, Prof Bolton said that there are patients that she and her colleagues have phoned who have “persisting symptoms”, which tend to be breathlessness, fatigue, and a loss in taste or appetite resulting in “significant” weight loss.
Perhaps most interestingly, she said that patients can have a milder reaction to the virus and have symptoms persisting, whereas severe symptoms can go away quicker.
This is something that Professor Spector has also found: so far, he said, it’s looking like people with a very acute onset during the first two days tend to get it out of their system after about ten days, whereas the patients who have “more strange” symptoms seem to have them for longer in a “coming and going” pattern.
Prof Bolton also said that some younger people who contracted the virus are reporting periods of forgetfulness. “They’re feeling better in many ways, returning to work, but then their cognition is affected. They’re reporting it now because a few weeks on it’s returning. We need to be aware there is a whole spectrum of responses and outcomes from this condition.”
Images showing the inflammation effect that covid has on the lungs
In terms of the long-term impact of the virus on the body, Prof Bolton said there is some awareness of longer-term scarring on the lungs. “We are aware that in a small proportion of patients there may have been some persistent scarring and that is different. There are also reports of small but noticeable proportion of patients having persisting changes we’d describe as fibrosis, and there have been recommendations from the British Thoracic Society on the follow up process for those who don’t seem to be recovering as we’d expect.”
The way that the virus impacts the lungs for some patients is a “major concern”, according to Dr Rupert Jones, a physician with special interest in pulmonary rehabilitation at the University of Plymouth. “You reach your maximum lung capacity at around the age of 18 to 20, and from then on lung function is declining. You don’t get it back, and if you have a major episode of pneumonia or TB that damages your lungs, that’s eating into your reserves.”
As with other experts, Dr Jones stresses that the longevity of Covid-19 isn’t clear, although there’s “emerging evidence that people are shedding the virus for months afterwards, so the virus isn’t going away”.
Stressing the importance of rehabilitation for Covid 19 patients, Professor Bolton says that there needs to be an “adaptive and coordinated” approach to the situation, given social distancing measures will require changes in traditional rehabilitative care, which often uses group work. “Many hospitals are trying to set up and/or deliver what they can to meet needs here and now, but a coordinated, funded approach is needed,” she added.
On what kind of rehabilitation Covid-19 patients are going to need, Professor Sally Singh, head of pulmonary and cardiac rehabilitation at University Hospitals of Leicester NHS Trust, says there’s a general feeling that an adapted pulmonary rehabilitation approach may be best.
“Given the symptoms that are being exhibited are predominantly respiratory related, I think there’s a general feeling that there’s a service provided [pulmonary rehabilitation] that had traditionally been focused on people with chronic lung disease,” she said. “There’s recognition that the most sensible approach might be to adapt that; there’s no appetite to reinvent the wheel.”
“The impact of being ventilated and on an ICU bed for weeks at a time is profound for your cognitive ability, and physical and mental wellbeing,” she added. “You’d hope that people can recover but it won’t be spontaneous and it’ll need to be supported.”
But capacity to support these patients remains a concern among rehabilitation experts.
“Rehabilitation services have never been as well-funded as acute services,” said Professor John Hurst, a professor of respiratory medicine at University College London. “The NHS has reorganised itself with incredible speed to address this acute peak, and it would be great to see that reorganisation and momentum to deal with the medium and longer-term patients.
“From experience it is a slow recovery, but it’s a very variable thing. We’ve started a programme of calling patients up who have been discharged to check on recovery and signpost them to resources, and we’re finding a high proportion still have ongoing symptoms and needs,” he said. “That’s of the hospital population. We know much less about people in the community.”
“What’s come through very strongly is the need to be holistic,” he added. “Yes, it’s a respiratory illness, but actually we’re also thinking about fatigue and mental health. Patients have been through a life-changing episode that’s like no other.”
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