How long Covid risks ‘going the same way as ME’

Neelam* loved nothing more than taking sunrise walks along the Manchester Ship Canal. But, since catching Covid-19 in August 2022, she only has the energy to see her beloved skyline every three weeks – often paying for the exertion with fatigue so severe, she’s unable to leave her bed for days.

“I got Covid, and I never got better,” says the medical writer, 34. “If I exert myself even a tiny bit, I’m so exhausted that I can’t even sit on my sofa: I have to lie down. I can’t watch Netflix: using my laptop requires too much concentration.”

Neelam now works fully remotely and barely sees friends. “I tried going into the office on Fridays, but was so exhausted, it took me the whole weekend to recover,” she says. “On the rare occasions I now go to a restaurant, I have to sit outside and only go during the quietest periods. I never venture out without wearing a mask, as I’m so terrified of catching Covid again.”

For most of us, the days of lateral flow tests, hand-sanitiser and standing 6ft apart are a distant fever dream. But not for Neelam and her fellow Covid long-haulers. “The Government ignores us,” she says. “Most frustratingly of all, the medical profession still won’t take us seriously.”

Long Covid is a term used to describe ongoing symptoms of Covid-19, or new symptoms that develop after an infection. According to research released last week by the Office for National Statistics, an estimated two million people – that’s 3.3 per cent of England and Scotland’s population – are currently experiencing “self-reported” long Covid symptoms.

One and a half million of these said their lives were adversely impacted by their illness with almost 400,000 reporting that their ability to undertake day-to-day activities had been “limited a lot”.

Research conducted last year by the Government revealed that fatigue was the most common symptom of long Covid (reported by 72 per cent), followed by difficulty concentrating (51 per cent), muscle ache (49 per cent) and shortness of breath (48 per cent).

The term long Covid is familiar to all of us, yet the illness itself remains something of a medical mystery. “Long Covid is going the same way as ME [myalgic encephalomyelitis],” says Nigel Speight, a consultant paediatrician. “For a large number of years, GPs abdicated their responsibility for it because it wasn’t an ‘ology’ and the psychiatrists invaded the empty territory. Once they made it seem controversial and ‘no one knows if it’s real’, doctors sat on the fence and pretended it didn’t exist.”

ME is a complex and chronic post-viral fatigue syndrome, and a diagnosis has been considered controversial. A 2020 literature review found that “a third to a half of all GPs did not accept it as a genuine clinical entity and, even when they did, they lacked confidence in diagnosing or managing it.”

Dr Chris Smith is a consultant virologist at Queens’ College, Cambridge and presenter of the Naked Scientists podcast. “Given the broad range of symptoms, from brain fog to fatigue, muscle pains and signs of nerve damage, it’s likely that long Covid is not one single condition but an umbrella term uniting a host of different syndromes, all with different mechanisms, outcomes and best treatments,” he says.

“The problem is further compounded by the fact there’s no reliable test yet for long Covid.” (The same is true for ME, which does not have a diagnostic test.) “This means that getting an accurate diagnosis remains a challenge.”

Dr Smith talks about the “unappetising prospect” that claims of long Covid may “become the occupational health virological equivalent of a whiplash for the work-shy, making genuine cases of long Covid harder for victims to defend. Let’s hope not.”

Long Covid sufferers are used to being told they are malingerers, that their condition is “just an excuse” or that it’s all in their heads. Conspiracy theorists on X delight in telling them they are suffering from “Long Vax” – that their symptoms are a result of the vaccinations, rather than a reaction to the virus.

For campaigners such as Ondine Sherwood, who runs a charity and support organisation called Long Covid SOS, this widespread view is frustrating and upsetting. “I can’t understand how a post-viral illness attracts such scepticism and nastiness,” says Sherwood, who had suspected long Covid for six months in 2020 (her initial illness occurred before the tests were available).

“As with ME, doctors were not prepared for the aftermath of Covid, and told their patients: ‘Oh, it just goes away.’ Our recent GP survey showed that over 62 per cent of long Covid patients received no practical help from their GPs and 9 per cent were told their symptoms were down to anxiety.”

Neelam had been vaccinated three times when she caught Covid while visiting her parents in India. When her utter exhaustion showed no signs of abating after a month, she saw a healthcare assistant at her GP’s surgery who told her that “this happens a lot;  you will get better in a few weeks.” But the fatigue continued. One afternoon, Neelam was once unable to squeeze onto a packed tram: the 15 minute walk home left her in bed for four days.

Sent away by her GP again in January 2023, Neelam insisted on a referral to a long Covid clinic. It took a year for her appointment to come around. “I told them I wanted to tackle my physical symptoms, but all they did was discuss my mental health,” she says. “I eventually received a letter diagnosing me with anxiety. Then I was offered an appointment with Occupational Health about how to manage my workload – which has never been the problem. I was upset and frustrated. If the doctors don’t believe me, what’s the point?”

None of this is helped by Neelam’s friends, who are sceptical about her illness. “Many of them refuse to believe me or don’t understand,” she says. “‘They roll their eyes when I ask them to do a lateral flow test before meeting me. The other day I mentioned long Covid in a WhatsApp group and everyone went silent for ages, until another friend changed the subject entirely and the conversation started again.”

Determined to unlock the secret of her physical symptoms, which include a fast heart rate, Neelam is now under the care of a private cardiologist. She is taking medication to slow her pulse, which she says: “helps a bit. But even the cardiologist was asking about my stress levels and my anxiety. They are trying to find reasons for my condition that don’t exist.”

Like most others with long Covid, Neelam is desperate to regain the life she knew before its onset, but campaigners repeatedly point to the lack of research in treating the condition. “The Government boasts about £50 million in funding, but that was all spent in 2021,” says Ondine Sherwood. “Since then, long Covid has lost out to other conditions.

“But when the Government complains about economic inactivity, they never mention long Covid,” she says. “Two million people are being impacted – a third of them have had long Covid for more than three years – and you can’t force people back to work. We need treatments, we need interventions and this won’t happen without the Government investing at least £100 million in research.”

Some studies are continuing, such as the Wilco (Working out the Immunology of Long Covid) study at Imperial College London, which examines the immune responses of patients who have had Covid. One theory behind the illness is that the immune system – activated by the Covid virus – fails to switch off, with sufferers’ symptoms being attributed to this. Sherwood points to studies conducted by Yale University and in the Netherlands. “All this research could lead to treatments, but it’s so far off,” she says. “Trials take a long time.”

Neelam used to follow every twist and turn in scientific research: now she is simply too exhausted. Her main concern is to avoid catching Covid again, as well as managing her constant daily fatigue.

“None of this was on my radar two years ago,” says Neelam. “But, these days, my mind is constantly doing these calculations – how busy will the tram be? Is there a bench on the way to the Co-op? It’s exhausting. People think the pandemic is over, but I live it every single second.”

*Names have been changed