When news of a virus began to percolate last January, the consensus was this: symptoms are flu-like. Most people, save for the elderly and those with pre-existing health conditions, experience a pretty mild illness. The effects of this generally taper off before a fortnight has passed.
For a little but profoundly impacted group, though, this simply is not the case.
As a year has passed since the contagion first arrived, awareness has been increasing about 'long Covid.' Here, people who contracted a version of the virus – one that was not severe enough to require time in an ICU bed – see the two-week line flash by and then zip into the distance.
This winter, The National Institute for Health and Care Excellence (NICE) released clinical definitions of on-going symptoms which appear to be traced back to a COVID-19 infection. They are:
Ongoing symptomatic COVID-19
'Signs and symptoms of COVID‑19 from 4 weeks up to 12 weeks.'
'Signs and symptoms that develop during or after an infection consistent with COVID‑19, continue for more than 12 weeks and are not explained by an alternative diagnosis. It usually presents with clusters of symptoms, often overlapping, which can fluctuate and change over time and can affect any system in the body. Post‑COVID‑19 syndrome may be considered before 12 weeks while the possibility of an alternative underlying disease is also being assessed.'
'In addition to the clinical case definitions, the term 'long COVID' is commonly used to describe signs and symptoms that continue or develop after acute COVID‑19. It includes both ongoing symptomatic COVID‑19 (from 4 to 12 weeks) and post‑COVID‑19 syndrome (12 weeks or more),' a statement released by the body reads.
They can be left with life-changing things like debilitating fatigue that leaves them unable to care for children or work, chest pains, strange heartbeat patterns or constant headaches. The mental challenge is profound: trying to live alongside a gnawing concern, one that has taken deep roots somewhere in their gut, that they are living with something that might have caused irrevocable damage.
In the autumn, experts released fresh data which suggests some new findings with regards to this community. Dr Claire Steves and Prof Tim Spector at King’s College London have been running the Covid Symptom Study – a project which collects data from an associated app, and into which people with Covid symptoms can track how they are doing – since late March. According to analysis from 4,182 participants, one in 20 of those infected become 'Covid long-haulers,' with symptoms stretching past eight weeks.
These people were tested for the virus, to ensure that they were confirmed cases.
To note: this study has been released as a pre-print, and, as such, has not been peer-reviewed, yet.
Watch: What is long COVID?
How long does 'long Covid' last?
The COVID Symptom Study research focused on those who had symptoms lasting over eight weeks (this applied to one in 20 people.) While some see the illness appear to retreat around then, over one in 50, per the study, see symptoms that persist beyond 12 weeks. A small section of people are reporting symptoms stretching on past the six month mark.
Who is most likely to get 'long Covid'?
The data implies that you can roughly 'predict' who will go on to be plagued with issues. The academics note that diverse and numerous symptoms indicate a greater chance, as does your age (older people are "much more likely" to develop this form of the illness, with 10 per cent of 18-49 year olds affected, versus 22 per cent of over 70s).
Your weight is also a factor (people who develop 'long Covid' appear to have higher average BMIs than those with 'short Covid'), as does your sex. Men are more frequently admitted to hospital with Covid, note the experts, but women suffer extended symptoms in bigger numbers (9.5 per cent of the former; compared with 14.5 per cent of the latter.) The researcher's data indicates that having asthma also means you're more likely to develop 'long Covid.'
What does 'long Covid' feel like?
The study found that people dealing with this hardship fell into two camps: those whose symptoms were respiratory – coughs, shortness of breath, fatigue, headaches – and those whose symptoms were ‘multi-system’, with issues playing with many areas of their bodies, including the brain, gut and heart.
According to Long Covid SOS, a UK campaign for recognition and support of this group of people, those experiencing on-going issues receive little help. ("Some health professionals seem to be unaware of the existence of this phenomenon; those that do often lack the resources to help, leaving many struggling to get the care and recognition they need. Sufferers may be unable to get support from family and friends who do not understand why they are ill for so long, and many are put under pressure to return to work or otherwise face a loss of sickness benefit," reads their website.)
It's vital to note that some people who fit none of the aforementioned criteria can be plagued by symptoms.
Tom Stayte, who lives in London and is in his early thirties, has dealt with radically life-changing symptoms for over six months. In September, he posted a thorough account of his ordeal thus far to his Instagram page: describing what felt to be a "re-activation" of the virus in his body seven weeks after his initial infection, with constricting chest pain, intense acid reflux, gut issues and "distorted sensory experiences". These included not being able to tell if objects were hot or cold via touch.
What does 'Long Covid' feel like?
Here, Lucy Onyango, a financial crime analyst, who is 28 and from south London, details her experiences with the issue
‘I first started to develop a fever just as the UK went into lockdown in mid-March last year. I had all the textbook Covid symptoms: fatigue, shortness of breath, brain fog, loss of taste and smell.
After 20 days, I felt better, and convinced myself I’d recovered - aside from the fact I mysteriously still couldn’t tie my hair back in a bun without getting a crippling headache. I’d got into a lockdown routine of regular Pilates and signed up to a half-marathon - then, in August, symptoms flared up again and, this time, they lingered. Doing the laundry left me exhausted, while Zoom meetings were followed by a lie-down because the brain fog made it difficult to concentrate on what people were saying.
On the rare occasion I met up with friends for a walk, it would take days for me to regain the lost energy. I’d go to bed and wake up still feeling tired; it became a demoralising, joyless never-ending cycle. I sought professional support from my GP in September, after 30 minutes of yoga left me with crippling chest pain. I had blood tests, which came back normal, and an antibody test confirming I’d had Covid.
My female doctor was the first to mention ‘Long Covid’ - they were sympathetic, which I appreciated, but had no real advice. Months later, my energy levels are improving although my lungs are not yet 100%.
Still, I prevent my mind from asking: is this me forever? I can’t handle that prospect, so I’m focusing on achieving what I can manage each day and not sinking, mentally.’
Why do some people get 'Long Covid?'
That's not certain, right now, but is being investigated. One theory is that, in people with 'Long Covid,' the immune system doesn't go back to normal after the initial phase of the disease.
Another is that, while the virus clears from most of the body after the initial phase, it hangs around in small pockets. 'If there's long-term diarrhoea then you find the virus in the gut, if there's loss of smell it is in the nerves - so that could be what's causing the problem' Prof Spector told the BBC.
What is being done to help people with 'long Covid?'
Awareness is spreading. Health Secretary Matt Hancock has spoken about this "devastating condition" since September, while NHS England stated at the start of October that those suffering would be offered specialist treatment at clinics across the country. "Respiratory consultants, physiotherapists, other specialists and GPs will all help assess, diagnose and treat thousands of sufferers who have reported symptoms ranging from breathlessness, chronic fatigue, "brain fog", anxiety and stress," said a spokesperson.
This week, the body released a video in which some patients, including Stayte, explained what has been happening to them, with the aim of encouraging people to remember the true risks of breaking social-distancing measures. "I am acutely aware of the lasting and debilitating impact long Covid can have on people of all ages, irrespective of the seriousness of the initial symptoms," said Hancock in a statement to accompany the release of the film. "The more people take risks by meeting up in large groups or not social distancing, the more the wider population will suffer, and the more cases of long Covid we will see."
Of the King's College study, Dr Steves said: "It’s important we use the knowledge we have gained from the first wave in the pandemic to reduce the long-term impact of the second. Thanks to the diligent logging of our contributors so far, this research could already pave the way for preventative and treatment strategies to reduce the long term effects.
"Using the app daily can help affected people and their doctors better categorise and judge their risks of developing a longer, more severe disease. We urge everyone to join the effort by downloading and sharing the app and taking just a minute every day to log your health."
Professor Spector said: "Covid-19 is a mild illness for many, but for over one in 50 people, symptoms can persist for longer than 12 weeks. So it’s important that, as well as worrying about excess deaths, we also need to consider those who will be affected by long Covid if we don’t get the pandemic under control soon.
"Having such large numbers of people affected means specialist services need to be set up urgently with the full financial help for hospitals and GPs. As we wait for a vaccine, it is vital that we all work together to stem the spread of coronavirus via lifestyle changes and more rigorous self isolating with symptoms or positive tests."
Watch: What UK government COVID-19 support is available?
What should you do, if you think you have long Covid?
You can go to the 'Your Covid Recovery' site, from the NHS, for guidance
Speak to your GP or primary health care provider if you are not recovering as quickly as you would expect
Call 111 for advice if your symptoms are worsening
Call 111 or 999 if you are: coughing blood, have severe chest pain or are getting more breathless
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