Long Covid defies understanding as sufferers despair

Days before Britain’s first lockdown in March 2020, Claire Hastie fell ill with Covid-19. Sixteen months later she is still suffering the after effects of the disease which, at her lowest, she feared would kill her. 

Hastie, who is 48 and has been unable to return full time to her job in corporate communications, recalled: “I said to one of my sons that if I didn’t wake up, I’d had a nice life. I tried to make it light-hearted, I said I’d haunt him . . . I had to summon every bit of energy I had to write down some end of life wishes which I shared with my mum and sister.”

Even though her oxygen levels did not fall low enough to be admitted to hospital, she continues to suffer a debilitating array of symptoms, ranging from shortness of breath to cognitive impairment. It is a painful daily reminder that, even as so much progress has been made in managing the disease itself, “long Covid” continues to defy scientists’ attempts to treat the syndrome and to unravel its causes.

Hastie, who founded a long Covid support group on Facebook. which has so far garnered 42,000 members from more than 100 countries, said her three sons also developed the condition after catching Covid from her last year. The two youngest — 12-year-old twins — still regularly miss school due to enduring gastric problems.

As the UK and other countries face a new wave, scientists are racing to find out what causes long Covid amid fears that even as vaccination suppresses deaths and hospitalisations from the disease, lifting restrictions could leave even more people exposed to longer term illness.

In India — recently battered by a ferocious Covid wave — front-line doctors are seeing a rising tide of long Covid cases, while many private and public hospitals are opening specialised “post-Covid centres” to offer treatment and support.

Dr Randeep Guleria, director of the All India Institute of Medical Science, estimated that 40 to 60 per cent of hospitalised Covid patients in India suffer ongoing conditions for up to 12 weeks. Of those, 10-15 per cent are still struggling with “classical” long-Covid afflictions — such as breathlessness, joint pains, brain fog and chronic fatigue — after three months.

Indian hospitals are carrying out various studies into long Covid, Guleria said, including whether specific biomarkers can predict which patients are at risk at the time of hospital discharge, and whether traditional yoga may be an effective remedy. The government is also looking at how to treat long Covid in rural areas, hit hard in the recent wave.

In the US, FAIR Health, a non-profit organisation, studied the private healthcare claim records of almost 2m Covid-19 patients, discovering that close to one in four had at least one post-Covid condition.

38% The number of people who contract Covid who are still dealing with symptoms 12 weeks later

In the UK almost 38 per cent of people who contract Covid-19 are still dealing with one or more symptoms 12 weeks later, according to the React study undertaken by London’s Imperial College.

Dr Toby Hillman, who has become an expert on the syndrome after establishing one of the NHS’s earliest long Covid treatment hubs at University College London Hospitals in May 2020, said the service had now treated about 1,700 people. He added that those treated were mostly aged in their 30s, 40s or 50s, and previously fit, defying the stereotype that Covid causes most problems for elderly patients with existing conditions.

Respiratory physicians initially took the lead but, as the variety of symptoms grew, cardiology, neurology, ear, nose and throat and dermatology specialists were enlisted to the fight. 

There are more theories than you can shake a stick at as to what’s causing [it]

Hillman added: “It’s become this entirely sort of cross-cutting, multi-speciality, multi-system disorder, which, at the moment, defies really clear characterisation.” 

An international study of 3,700 “long-haulers” from 56 countries, led by University College London, showed the amazing diversity with which the condition manifests itself. Patients reported more than 200 symptoms across 10 organ systems.

UCL neuroscientist Athena Akrami, leader of a study published in the Lancet’s EClinicalMedicine, said there were likely to be “tens of thousands of long Covid patients suffering in silence”, unsure that their symptoms were connected to Covid-19. She called for a national, community-level programme able to “screen, diagnose and treat all those suspected of having long Covid symptoms”.

The National Institutes for Health in the US, and National Institute for Health Research in the UK, will both shortly announce new contracts for research into the condition.

“Within a vacuum of information, which is what’s been created around long Covid, false hopes proliferate dramatically. There are more theories than you can shake a stick at as to what’s causing [it],” Hillman said.

The roots and varying manifestations of long Covid have similarly puzzled US scientists. “Long Covid is an enigma,” said Michael Saag, associate dean of global health at the University of Alabama at Birmingham. “Job one is to get a case definition agreed upon and solidified, and part of that also would help awareness.”

One promising avenue being explored is that long Covid is an autoimmune condition — something that Hillman says sufferers themselves had long suspected. Recent work carried out at Imperial suggests “that the body is starting to recognise its own proteins as something from outside and turning its defences against itself”, he said.

Danny Altmann, professor of immunology at Imperial College London, said his lab is working to discover autoantibodies associated with long Covid, which could be used for diagnosis, but he did not want to talk about the details. “I can’t see why we shouldn’t be able to take this to a diagnostic test within six months,” he said.

In the US, meanwhile, researchers at Yale have focused on determining the cause of respiratory problems such as shortness of breath and chest pain, which can occur weeks after the initial Covid infection. 

From blood samples, they found three proteins that were associated with long term impaired lung function. Hyung Chun, co-director of the Yale Cardiovascular Research Centre, said the proteins were previously associated with severe coronavirus illness and it was interesting that they were detected at heightened levels in long Covid sufferers. “It does not seem like there’s a universal mechanism that drives these symptoms. It’s something that we’re all actively investigating,” he said.

Even as they intensify their efforts to understand the condition, scientists on both sides of the Atlantic feel anxious about the surge of long Covid cases that may result from the premature lifting of coronavirus restrictions. Nisreen Alwan, associate professor in public health at the University of Southampton, who developed long-lasting symptoms herself after a bout with the virus last year, pointed out that rates of hospitalisation and death were often displayed at Number 10 press conferences to explain the government’s thinking but long Covid data was never shown.

Some fear that the syndrome could be this generation’s polio — recalling the infectious disease that held the world in its thrall for decades and caused survivors life-long problems.

While Hillman believes long Covid is of a lesser magnitude, the impact on society will similarly be profound. “I think the degree of impairment that people are experiencing, with long Covid, you could compare with some of the impairment which people had with polio . . . We’re talking about a younger population in their 30s, 40s and 50s. And these are people who have families, they’re teachers, they’re bus drivers . . . Many of them are really struggling to get back to work full time, or in some cases even struggling to get back to work at all. And this is after six or nine months.”