“It’s like it attacks any weakness you already have” they say, their voices croaky and interspersed with coughs. “It’s almost like it knows I’ve always had gastrointestinal issues”.
Covid-19 is deadly. That much we know. The widely accepted view amongst the majority of the world is that if you’re old and infirm, you’re at risk. Otherwise, you’ll have a bit of a rough time for a couple of weeks. After that, it’s back to life as you knew it. For some people, however, that’s simply not the case.
The plight of those patients who haven’t seen the expected symptom trajectory is starting to get more attention, however. More and more evidence is coming to light that “long Covid”, as it’s commonly known amongst people battling it, is not just in their heads. Despite the stigma of the longer term suffering and the reported ignorance from the healthcare professionals they have struggled to gain recognition from, prominent voices from the medical community are finally looking into this phenomena.
“I’ve studied 100 diseases. COVID is the strangest one I have seen in my medical career”
Professor Tim Spector of King’s College London
Prof Tim Spector suggests that the focus had been too heavy on those who ultimately succumb to the disease and not those who have survived, but are barely really living a good quality of life.
“There is a whole other side to the virus which has not had attention because of the idea that ‘if you are not dead you are fine.’”
Prof Spector, who is currently leading the UK’s Covid Symptom study, suggests that up to 1 in 10 people who are infected with Covid-19 are suffering for longer than the expected two week period. They have a variety of symptoms which vary in severity and are relapsing and remitting depending on their exertion levels throughout the day. After a few days of getting better, they will suddenly feel like they go backwards and are struggling once again.
In an informal survey of 465 people within an online support group for Long Covid sufferers, 89% said their symptoms fluctuated.
Suffering from the long term effects of Coronavirus is bad enough, but receiving unfair criticism and judgement from friends, family and your own GP must completely compound the loneliness and alienation you feel from the world. Having spoken to four women who have been affected – in varied amounts of severity – by what they call ‘Long Covid’ – it was clear that they were most fed up by not being believed.
“Have you had your meds today?” is what I was asked by 111” said mother of three, Kristin, 40, from Aberdeenshire. She’s felt unwell since Mother’s Day, the day before lockdown was imposed. “They have access to my medical records so can see my mental health history”. As a stay at home mum to her boys, aged 10, 6 and 3, she feels very fortunate she is under no pressure to return to work. When her 6 year old started coughing, she pulled all three of them out of school early and they decided to self-isolate. The relapsing and remitting nature of the post-Covid slump is clearest when talking to Kristin, who explained she’d felt well enough to lay some turf for a couple of days, then paid for it later when the symptoms came back with a vengeance. Pins and needles, muscle pain, fatigue and brain fog are her main complaints. Her husband caught it too, as well as her 6 year old, but Kirstin is the worst affected now and said that “if you don’t fulfil the tick boxes” then you struggle with help from 111.
Her GP has been a little more understanding, however, and likened the recovery process to an ecosystem returning from a tsunami. “Everything gets flattened and it takes quite a time for things to regrow and the landscape to be rebuilt” he told her. He also revealed that his hypothesis for her situation was that she’s being hit by wave after wave of new chest infections. Like a scab that’s being picked constantly, her system is struggling to repair the damage wreaked by Covid-19.
“My GP suggested that it was all in my head” said Steph, 33, from North Warwickshire, who has been unwell since around the 6th March. A colleague had been to Italy which is where she suspects she’d contracted Covid-19. All that seems to be helping her recovery is a reliance on antibiotics and her symptoms have varied from rashes her GP can’t explain to cellulitis in one leg, constant aches “like leg day at the gym, but every day” and complete numbness in her fingers and toes. As a self-employed chef who makes incredible ‘illusion desserts’, she had no choice but to return to work, despite being far from well around 18 weeks from the onset of the illness.
“My GP actually laughed at me” she said. She was accused of malingering by friends and family too, who asked her “if you’re so ill, why aren’t they keeping you in hospital?”
“One of the hardest things is the hit on my creativity. My memory is poor and the brain fog is affecting the very core of my personality and talent”
Steph Parker, talented chef and dessert creator
Now back to working in the pub, Steph had just finished her first week when she spoke to me on Friday. Having witnessed far from cautious behaviour from returning punters, she has a warning to everyone who thinks they’re immune because they’re young. “If you only knew how bad this is – how bad it can be – you’d be adhering to the rules.” After 3 months bedridden, Steph’s not finding it much easier to get back to life as normal.
“That’s the most shocking part of this, the fact that friends and family ask me “are you not better yet?” with disbelief in their voices. Over time, sympathy fades”,
Lucille, a jewellery maker from Suffolk
Lucille’s story was the one that most resonated with me, having experienced a severely unwell child during lockdown myself. Her tale – of both parents flattened by Covid – and being hauled off to hospital in an ambulance – leaving her husband and two of her five children also severely unwell behind, not knowing if she’d ever return – was utterly heartbreaking.
Lucille’s youngest child, who is 3, has severe anaphylaxis. Because of his vulnerability, the family decided to pull the other children, aged 14, 12, 9 and 6, out of school before the government closed the schools. They went into immediate isolation. Her husband, who is classified as a key worker as a food production employee, continued to work until he was afflicted, too.
When her three year old went into shock on Easter Monday, though, they had no choice but to go to A&E, where Lucille thinks the Coronavirus infection came from. She tested positive on 30 April.
“You go to bed each day in the early stages thinking… when I wake up tomorrow, I’ll feel better”, she explains. Several weeks on from those early days, she realises that full recovery could still be a long way away.
After three days of not being able to keep anything down (Lucille’s symptoms were mostly concentrated on gastrointestinal issues) her GP gave her some anti-emetics but they didn’t work. After having 5 children, I asked whether Lucille felt that the sickness was anything like morning sickness. She completely agreed and likened it to the dread of everyone who’s seen two lines on a pregnancy test – the awful hyperemesis gravidarum.
All of her children caught Coronavirus, but two of them were “frighteningly ill”. Her 8 year old (now 9) suffered from headaches as part of his long-term problems with recovery. Not wanting to frighten him, she hid her true concerns – over neurological issues – from him. Nine weeks on he’s no longer asking for medication for the problem on a daily basis. Lucille’s description of the initial effects on her son was the most chilling part of our interview. She described how he had woken from sleep screaming and the dramatic shaking and shivering (rigor) caused by a young body battling to manage rapid temperature increase. Apparently, 111 told her that he was not welcome in hospital – via ambulance or their own transport – unless they thought he was genuinely going to die. Having to make that judgement call (and the fear you could judge it wrong) would surely traumatise any parent.
When they took Lucille to hospital in an ambulance, though, there was an almost tangible fear that she might never return. She was told, in no uncertain terms, to say goodbye to her family. Describing her husband’s ashen face, the memory clearly triggering, she said it they had clearly stated it was a case of if you returned, not when.
“As soon as I was in the ambulance I broke down. I thought I’d left my husband and 5 children forever”.
Lucille feared she’d never see her family again
Lucille’ message is clear – that the long-term effects from this virus are currently unheard. Unheard by the government, by the medical establishment and by the general public. She’s worried about the ‘stay alert’ campaign and says it’s problematic because it focuses on people’s personal responsibility for avoiding and controlling a virus as if it were a threat we can see. “The idea that if you catch it, you have been irresponsible is dangerous for people who work for unscrupulous employers”, she warns. Lucille is also deeply unhappy about the fact that people like her are being treated like outliers, when she doesn’t believe – based on the evidence – that is the case.
Though there seems to be a dearth of help for the ordinary population, some of the medical establishment who are experiencing the same trouble are trying to raise awareness of this highly troubling phenomena.
Paul Garner, Professor at the Liverpool School of Tropical Medicine, is one of those voices. Writing for the British Medical Journal, he explains: “Sometimes I felt better and became optimistic; but then the next day I felt as though someone had hit me around the head with a cricket bat. Staff at work criticised me for not being clear “make up your mind! Are you getting better or not?” The symptoms changed, it was like an advent calendar, every day there was a surprise, something new.”
There are currently no guidelines or pathways for assessment and management of what appears to be a chronic variant of COVID-19. We believe this data highlights the eminent need for these: of our professional cohort 34 were refused help. Failing to include these patients in the care pathway also means we are missing out an important opportunity to investigate and document the longer-term natural history of this new disease.
Emma Webb, Paediatric Endocrine Consultant, with other contributors, wrote to the British Journal of General Practice on 3 June with a stark warning to her colleagues.
The government seem to have taken some notice of these patients and plan to launch the “Your Covid recovery app” soon. According to the BBC, it will be an “online portal for people in England to access tutorials, contact healthcare workers and track their progress”. but campaigners say it’s not enough and won’t tackle the real problems sufferers are facing every day.
Ondine Sherwood, who I also spoke to on Friday, told me her story and why she, and the LongCovidSOS campaign group are calling on the government for greater assistance. She disputes the use of the app and says it’s just not going to be the help they need.
LongCovidSOS’ comprehensive and carefully crafted letter, sent to Matt Hancock and the Prime Minister, amongst other recipients, makes few demands but remains unanswered by Johnson.
The pressure group is asking for a working group to investigate the problem; urgent research into the situation to be commissioned; training and support for HCPs encountering patients of this kind and better consideration of the economic issues that sufferers are experiencing.
“Despite the lack of comprehensive data, it is clear from testimonies […] that not only were most of them healthy before they contracted the virus, large numbers were extremely fit. A shocking lack of attention has been paid to this significant group of people of all ages, and many sufferers feel badly let down by the medical establishment.
Unfortunately, numerous people who have been infected with Covid-19 are being told that they are suffering from anxiety, and diagnoses of post viral syndrome/fatigue are frequently handed out when the range of symptoms suggest otherwise. Countless sufferers are forced to return to work, risking serious consequences for their recovery. An assumption that patients are no longer infected could have major implications for public health.
Not only is this a calamity for each individual, it is a serious matter for an economy which is already facing an existential struggle: large numbers on long-term sick leave will significantly impact the workforce as it emerges from furlough.”
LongCovidSOS open letter
As pressure on the government and health service to pay more attention to this growing issue, on a backdrop of further easing to lockdown measures, it’s a reminder to us all that it’s not just about whether you die from Coronavirus. If you survive, is it really living? Many sufferers seem to think it’s no quality of life at all.
Stay safe out there.
Resources for sufferers
https://www.c19recoveryawareness.com
https://www.facebook.com/groups/517530815866036/?ref=share
https://www.facebook.com/groups/650553172199572
https://www.facebook.com/groups/longcovid
https://www.reddit.com/r/COVID19positive
https://www.wearebodypolitic.com/covid19
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