When news of a virus, one which affected your lungs and travelled via particles of saliva passed on by those infected, began to percolate this 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 small but profoundly impacted group, though, this simply is not the case.
What is 'Long Covid?'
As months have passed since the contagion first arrived, awareness has been creeping about 'Long Covid.' Here, people who contracted a version of the virus – one that was not severe enough to require time in a precious ICU bed – see the two-week line flash by and then zip into the distance, with symptoms on-going.
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.
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 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.
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 Kings College suggests that there are some factors that raise your chances of incurring it.
If you have five different symptoms in the first week, you seem to be at higher risk. So, if you had a fever, cough, loss of taste and smell, gut issues and headaches, you'd be ar 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 a factor, (people who develop 'Long Covid' appear to have higher average BMIs 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. 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?'
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.)
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,' 60 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.
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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