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 little but profoundly impacted group, though, this simply is not the case.
As months have passed since the virus 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.
These can be life-changing things like debilitating fatigue that leaves them unable to care for children or work, chest pains, strange heartbeat patterns, 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.
Yesterday, 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To note: this study has been released as a pre-print, and, as such, has not been peer-reviewed, yet.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?
'Long covid' doesn't have hard definition right now. (One is to be announced by NICE by the end of October.) 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'?
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% of 18-49 year olds affected, versus 22% 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% of the former; compared with 14.5% 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 afore mentioned criteria can be plagued by symptoms.
Today marks exactly sixth months of serious ill health after I first got sick with Covid-19 in March. I’m sharing this because I want people to recognise that Covid-19 can have a life changing impact on young, fit people who were never hospitalised and had initially mild symptoms. ‘Long-Covid’ is a severe, debilitating illness that goes on for months after initially ‘mild’ cases of Covid-19. There are tens of thousands of sufferers - at least 60,000 in the UK alone and the number is set to rise dramatically as the pandemic goes on. We're classified in official statistics as ‘recovered’ yet are still unable to return to work, study or exercise, many are housebound, some even bed bound and all unable to function normally. In contrast to the ‘acute' Covid-19 which causes hospitalisation and is worse in the elderly, Long-Covid primarily affects young people in their 20’s, 30’s and 40’s. I got sick mid-March with the classic symptoms of ‘mild’ covid we’ve all heard about and initially thought I had recovered after just a week. Three weeks later the symptoms came back - much worse than the first time. Scary, but no hospital admission needed. After another 2 to 3 weeks I thought I had recovered once again, just with some lingering chest pain. But the real sucker punch arrived in early May a full 7 weeks after the initial infection. Suddenly the virus seemed to reactivate in my body - all the original symptoms came back, plus a bewildering array of new ones. May, June and July were lost to pummelling waves of symptoms. A crushing daily pain tightening around my chest like a band. Upper and lower GI distress. Searing stomach pain when eating. Angry acid reflux so severe it caused breathing issues. I had no appetite, yet was badly bloated. I lost over a stone without trying. I had nerve pain and muscle spasms in my jaw, neck, throat and shoulders. My fingertips permanently looked like I had just gotten out of the bath. I couldn’t regulate my own temperature. My smell, taste and hearing all created phantom sensations that didn’t exist... CONTINUED IN PHOTOS #longcovid #longhaulcovid #covid-19 #covid @longcovidsos @longcovid @wearebodypolitic
A post shared by Tom Stayte (@tom_stayte) on Sep 17, 2020 at 6:13am PDT
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 is being done to help people with 'long covid?'
Awareness is spreading. Health Secretary Matt Hancock has spoken about this 'devastating condition' since September time, while NHS England stated at the start of October that those suffering would be offered specialist treatment at clinic 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.')
New film from @nhsengland about the effects of #longcovid featuring one member @tom_stayte from the #longcovid support group we are all in called @wearebodypolitic *link in bio* for full feature #corona #countlongcovid #longhaulers #longhauler #covid_19 #covid #longcovid
A post shared by Long Covid SOS (@longcovidsos) on Oct 21, 2020 at 1:26am PDT
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 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.'
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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