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Long Covid: overlap emerges with ME – including debate over treatment

Six weeks after contracting Covid-19 in April, Dr Amy Small felt well enough to attempt a walk around Holyrood park in Edinburgh with her young family. Her kids wanted to climb Arthur’s Seat – the craggy hill at its centre. Thinking it would be OK if she walked slowly, Small agreed. “It put me in bed for several days afterwards,” she said.

In June, she returned to work as a GP, for a single half day: “It floored me completely for 10 days and took two months to get back to where I was prior to that,” she said. “I couldn’t speak one day due to the fatigue and struggled to stay hydrated as I didn’t have the energy to eat or drink.”

Before Covid, Small ran 5km at least three times a week. Now, even opening her eyes is a strain some days.

Based on current estimates, about 10% of Covid-19 patients develop lasting symptoms, one of the most common being fatigue. The underlying mechanism is still unclear, but possible explanations include reduced oxygen supply to tissues caused by heart or lung damage, or muscle weakness from prolonged bed rest.

However, some doctors are increasingly concerned about the overlap between long Covid and another largely virus-triggered illness: “It’s extraordinary how many people have a postviral syndrome that’s very strikingly similar to myalgic encephalomyelitis/chronic fatigue syndrome,” said the US’s top public health official, Dr Anthony Fauci, in July. “They just don’t get back to normal energy or normal feeling of good health.”

Like people with ME/CFS, many long-Covid patients report headaches, brain fog, sleep problems, a racing heart, joint and muscle pain and fatigue. Some also experience a relapse of fever, muscle pain and exhaustion, known as “post-exertional malaise”, if they exercise beyond their capabilities.

“There are so many similarities between long Covid and ME/CFS it leads me to believe the underlying pathology is probably the same – except that long Covid is presenting as an epidemic, whereas ME/CFS has presented in a very sporadic way, and by no means in such large numbers in such a short space of time,” said Dr William Weir, a consultant in infectious diseases with a special interest in ME.

Another thing the conditions have in common is medical disagreement over how best to treat the fatigue they cause. Last week, the National Institute for Health and Care Excellence (NICE) dropped a longstanding recommendation that patients with ME/CFS be prescribed graded exercise therapy (GET), which involves incremental increases in physical activity to gradually build up tolerance. Patient advocates have long argued that GET can cause lasting damage to people’s health.

The new draft guidelines don’t cover Covid-related fatigue. This may be covered by separate “long Covid” guidelines that are expected next month. Yet patient advocates are concerned that GET might result in similar harm for people with long Covid.

“Although NICE has already issued a statement that GET may not be appropriate for people with post Covid illness, we are concerned that several of the new NHS England clinics for Covid rehabilitation are recommending graded exercise or its equivalent to patients,” said Sian Leary of the patient advocacy group #MEAction.

“I have certainly seen plenty of posts from patients in long-Covid forums where doctors have told them to ‘just push yourself a bit more’,” said Small. This doesn’t surprise her. “During GP training we were told that GET was what one would suggest to someone who was recovering from a postviral illness like ME – so I suppose when GPs see someone who is experiencing ongoing symptoms of Covid this is what many of them would turn to. It is going to take time for those new CFS/ME guidelines to filter…

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