The ‘wrecked’ lives of forgotten long Covid sufferers

Tara Cobham, The Independent

Nearly four years since the start of the coronavirus outbreak, you could be forgiven for believing the pandemic is behind us. But for many, it feels far from over. Close to two million people face a daily battle with debilitating symptoms of long Covid — the lasting symptoms of the virus that remain after the infection is gone — with some now housebound, unable to walk and even partially blind. Alan Chambers, 49, and Allan Reeling, 76, are among those who have been grappling with the illness for years, having caught coronavirus in March 2020, two months after the UK’s first two patients tested positive for the virus.

Chambers went from being “a fit, healthy, working member of the community who would do anything to help anyone” to being “ill and isolated in our bedroom”, blind in one eye and no longer able to walk unaided, his wife Vicki said. The father-of-two also suffers from “intense” pain, “constant” headaches, chronic fatigue and an erratic heart rate. Just before he caught Covid, Reeling, of Telford in Shropshire, was going to the gym five times a week. Now, among other symptoms, his issues with balance are so severe that he can “fall flat on (his) face” when he attempts to stand, he is “absolutely frozen stiff and exhausted all the time” and he developed a “howling” in his left ear that was diagnosed as tinnitus.

He told The Independent: “It has wrecked the last three and a half years of my life, and it will wreck the rest of my life until the coffin lid is screwed. I wasn’t looking at circling the plughole (in a state of decline), but now I think I am circling the plughole.  “I can’t see this getting any better. I’d like to see the end of it, but I can’t see any prospect of it. On a daily basis, I feel rubbish. It’s atrocious, debilitating and depressing.” As of March, an estimated 1.9 million people in the UK have experienced coronavirus symptoms for more than four weeks, according to the latest figures from the Office for National Statistics. Of those, 1.5 million reported the condition had adversely affected their day-to-day activities.

Meanwhile, a major new study led by researchers at Imperial College London has revealed that one in 20 patients have symptoms lasting more than a year. Carol Vorderman opens up about long Covid struggle It comes as coronavirus case rates have shown an overall increase since July, with fears the approaching winter will bring a further surge in infections. Yet in May, the World Health Organisation (WHO) declared that coronavirus no longer represents a global health emergency, which was seen as a symbolic step towards the end of the pandemic.

Dr Jo House, founding member and health advocacy lead at Long Covid Support, said the advocacy group now has 62,000 members, with about 250 more people joining every month. “In their words, they feel ‘forgotten, unheard, disbelieved, isolated, unemployed, disabled, immobile’. The emotional cost of dealing with little or no medical support is devastating,” said Dr House, who has long Covid, along with her husband, after both caught the virus from a neighbour they were helping in March 2020. Research published in TheLancet in 2021 revealed that long Covid has over 200 symptoms. Dr House said she had noted symptoms from immobility to hair loss to vision issues among patients and described it as “a disease that causes multi-organ damage and damages cells in every body system”. Speaking of the impact the condition has had on her and her husband life, Dr House said, “We thought we would die and wrote letters to our kids. It took around a year until we could get out the house. I am still only back at work 40 per cent, and our kids are still our carers. Six months in I could hardly get out of bed.”

Despite her poor health, she and other medical experts wrote a review of long Covid in October 2020. The Covid Inquiry, which is examining the government’s response to the pandemic, heard this month that then-prime minister Boris Johnson labelled the condition “bollocks”. “We do feel forgotten,” said Rachael Illingworth, 37, who has been “debilitated” by long Covid for over two years and said she has had to resort to exchanging treatment suggestions with fellow sufferers on Reddit forums because of a lack of other support.

NHS England admitted to The Independent that access to necessary support, treatment and care for long Covid patients is still lacking. It said there was “still more to do to ensure support is there for everyone who needs it”, so that patients requiring specialist assessment and treatment for long Covid can access care in a timely way. After being mildly infected with Covid twice, Ms Illingworth, of Basingstoke in Hampshire, said she has been left with serious fatigue, shortness of breath, and brain fog that felt like her mind was “wading through treacle”. Previously sporty and active, at her worst, she was struggling to walk up a flight of stairs and unable to catch her breath. She was even having difficulties cooking and getting off the sofa.

After being signed off work for a month, she returned and told of a time she broke down in tears. “I stared at words and couldn’t formulate a full sentence. I knew what I needed to achieve, but I couldn’t move a box of text on a PowerPoint. I ended up in tears because it’s so debilitating – not just physically but also mentally. I have had to completely change the way I live my life.” Despite this, Ms Illingworth said it was a challenge to get doctors to believe or support her. She described being “medically gaslit” about what condition she had and the severity of it. The advice Ms Illingworth was given of merely needing to implement lifestyle changes is “sadly very common”, said Prof House. “Many are still being let down.” She said her patient surveys even showed that not being believed was worse for some than their long Covid symptoms. Personally, Prof House said she is among the patients who have been told their symptoms are down to anxiety. Mr Reeling said doctors told him: “There is nothing we can do about it. You just have to get on with it and learn to live with it.”

There is no cure for long Covid and it affects everyone differently, with treatment to attempt to manage the myriad of symptoms offering the best hope for sufferers. Similarly, Ms Chambers, of Worcester, said: “We’ve fought so hard to get help, but no one does anything.” The family has been struggling financially, with Ms Chambers forced to work full-time while caring for her husband. She said she set up a support group on Facebook, Long Covid Support, to help her cope with the intense anxiety she was experiencing. Chambers is among the 10 per cent of sufferers forced to stop working — at a cost of £1.5bn in lost earnings every year, according to the Institute for Fiscal Studies, indicating the condition’s lasting impact on Britain’s economy.