When news of a virus – one which affected your lungs and travelled via particles of saliva passed on by those infected – began to percolate at the onset of 2020, the consensus was that, in those who did not require hospitalisation, symptoms, from a fever to a dry cough, tended to taper off after around a fortnight.
For a profoundly impacted group, though, this simply is not the case.
What is 'Long Covid?'
Over a year and a half into the pandemic, awareness has been raised about long Covid. Here, people who contracted the virus – but who largely did not require time in ICU – see the two-week line flash by and then zip into the distance, with symptoms such as fatigue, 'brain fog' and breathlessness on-going.
How many people have 'Long Covid?'
The numbers are significant: the latest government data suggests that more than 2 million people in the UK have suffered from symptoms that persist after 12 weeks. This is significantly more than June data from the Office for National Statistics (ONS), which showed that around 1.6% of the population, about 1 million people, were self-reporting long Covid, with one in 3 of these saying that the symptoms were having a significant impact on their daily life.
Women are more likely to suffer from this than men (by 1.5 times, according to one study) and those in the 35-49 age category are most likely to report symptoms that linger.
What does 19 July mean for 'Long Covid?'
Now that Boris Johnson has stated that he plans to remove legal measures such as face masks and social distancing, come 19 July, some experts are warning that the numbers of people living with this worrying disease could reach dizzy heights. This is thanks to the spike of infections that will ensue, (up to 100,000 a day, according to health minister Sajid Javid) a number of which will lead to long Covid.
Speaking to The Independent, Exeter University healthcare expert Dr David Strain shared his concerns. 'Around two-thirds of those developing long Covid say that their ability to carry out normal daily activities is affected for 12 weeks or more, and many of them will go on to have symptoms for 12 months or more,' he said.
'If Covid cases increase exponentially as restrictions are removed, the best-case scenario is that we will have something like 3,000 people a day becoming incapable of working for three months or longer. In the worst case, that could be 10,000 a day or more.'
Of this, a Department of Health and Social Care spokesperson said: 'The government rapidly provided specialist care for acutely ill Covid-19 patients at the start of the pandemic and we’ve matched that speed and scale in our support for people with long Covid.
'To help people suffering the debilitating long-term effects of this virus, we have opened more than 80 long-Covid assessment services, and in June NHS England published a £100m plan, including £30m to help GPs improve diagnosis and care for patients with long Covid.'
How can 'Long Covid' present?
Last 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.
What are the symptoms of 'Long Covid'?
These can be life-changing things like:
debilitating fatigue that leaves them unable to care for children or work
not being able to think straight or focus (‘brain fog’)
strange heartbeat patterns or palpitations
joint and muscle pain
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 data that 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.
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 breathe its last around then, over one in 50, per the study, see symptoms that persist after 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'?
People from a thousand different demographics have reported long Covid. But the data from King's College suggests that there are some factors that raise your chances of incurring it.
If you have five different symptoms in your first week of coming down with the disease, you seem to be at higher risk, per this set of findings. So, if you had a fever, cough, loss of taste and smell, gut issues and headaches, you'd be at higher risk than someone who just had a cough.
Being female and over 50 also increase your risk, as does having asthma. Your weight might also be a factor, (people who develop long Covid appear to have a slightly higher average BMI than those with 'Short Covid.')
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.
Prof Spector told WH that he believes the virus seems to behave like an autoimmune disease – where the body's immune system mistakenly attacks and destroys healthy body tissue. His research has also shown that most female sufferers are between 50 and 60 – the age at which levels of the hormone oestrogen start to decline, ahead of the menopause. As such, along with Dr Louise Newson, a GP specialising in the menopause, his team will investigate a potential link with female hormones.
What is being done to help people with 'Long Covid?'
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.
While those suffering have reported going months with little in the way of help for this cruel condition, things are changing. Along with NICE definition of what it means to have 'Long Covid,' 80 centres dedicated to the illness have been set up around England.
'The assessment centres are taking referrals from GPs for people experiencing brain fog, anxiety, depression, breathlessness, fatigue and other debilitating symptoms,' said an NHS spokesperson.
In June, NHS England has pledged a £100M boost for care for people with long Covid, with new specialist hubs for children and for improvements to existing centres.
There is much we do not know about 'Long Covid' – and, right now, a silver bullet to 'cure' people is nonexistent. But these centres will allow people to see a blend of doctors, nurses, physiotherapists and occupational therapists for thorough assessments. From here, the hope is, they will be able to access appropriate treatment.
Is 'Long Covid' contagious?
No – on-going symptoms beyond four weeks are a result of your body's reaction to the virus beyond the initial illness. As ever, you should immediately self-isolate after you have an original symptom for 10 days, and of course, get a test. Per the NHS, you can stop self-isolating after these 10 days if:
you do not have any symptoms
you just have a cough or changes to your sense of smell or taste – these can last for weeks after the infection has gone
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. You can be referred to a 'Long Covid' centre
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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