Long Covid patients are told to exercise despite crippling fatigue

Professor Brendan Delaney developed a mild case of Covid just before the first lockdown in March, suffering the now- familiar symptoms of a cough, temperature and headache.

Feeling tired and achy, the 57-year-old London GP self-isolated for two weeks, by which time he had recovered enough to return to work.

But a week later, he suddenly experienced the 'most extreme fatigue'.

'I was breathless and had muscle pains and a recurring fever,' he says.

For people exhausted by a simple phone call, this seems like a huge task. This regimen has been prescribed for patients with the long-term fatigue condition known as ME (myalgic encephalomyelitis) or CFS (chronic fatigue syndrome) for nearly 20 years

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For people exhausted by a simple phone call, this seems like a huge task. This regimen has been prescribed for patients with the long-term fatigue condition known as ME (myalgic encephalomyelitis) or CFS (chronic fatigue syndrome) for nearly 20 years

Professor Delaney, a specialist in medical informatics at Imperial College London, used to cycle 80 miles every Sunday, but after he developed long Covid — which is thought to have affected 60,000 people in the UK — even speaking to patients on the phone was a challenge. Sometimes he would feel better, but then he'd relapse.

Three months later, in June, when he'd been able to start working again (though only part-time), he still had brain fog.

The official treatment for lasting fatigue, which is now recommended to long Covid patients, is graded exercise therapy (GET). It involves doing a bit more exercise every day, with NHS website Your Covid Recovery suggesting: 'It is important that you start being active as soon as possible after discharge from hospital . . . You should aim to build up to 30 minutes of activity at least five days a week.'

For people exhausted by a simple phone call, this seems like a huge task.

This regimen has been prescribed for patients with the long-term fatigue condition known as ME (myalgic encephalomyelitis) or CFS (chronic fatigue syndrome) for nearly 20 years. 

However, when these patients complained they felt worse after exercise, they were told it was because they had a faulty belief that they couldn't exercise. As a result, GET was often combined with cognitive behavioural therapy to rid them of this mistaken idea.

The official treatment for lasting fatigue, which is now recommended to long Covid patients, is graded exercise therapy (GET). It involves doing a bit more exercise every day

The official treatment for lasting fatigue, which is now recommended to long Covid patients, is graded exercise therapy (GET). It involves doing a bit more exercise every day

The good news for these patients is that last November, treatment watchdog the National Institute for Health and Care Excellence (NICE), issued draft guidelines for ME which dropped the graded exercise approach from its recommendations — and replaced it with a treatment that is the exact opposite.

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Rather than issuing a prescription of what exactly they should be doing and pushing them to do more every day, patients are now being told to exercise only as much as feels comfortable, 'at a level that does not worsen . . . symptoms'. But while this sea change is welcome news for some, Covid patients with long-term fatigue are being told they need GET.

'The ME patients I knew through my practice howled with anguish at the idea of treating Covid patients with GET,' says Professor Delaney. 

'I gave it a try as I'd told my ME patients in the past to do. But as a result, my fever came back and I felt a lot worse.'

Professor Paul Garner, another long Covid sufferer, described his experience in The BMJ in May as 'being on a rollercoaster of ill health' after developing the illness in mid-March. He is a senior member of the Cochrane Collaboration, a respected source of information about the latest treatments and evidence.

He was shocked, however,

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