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

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?”