Guardian article: Long Covid: overlap emerges with ME – including debate over treatment
by Linda Geddes, Science correspondent, Thu 19 Nov 2020
This article features people with long Covid, and looks at the similarities in symptoms of ME and the controversy over Graded Exercise Therapy for both.
…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.
“It is crucial to acknowledge that not all long-Covid patients will behave like CFS,” said Dr Manoj Sivan, an associate clinical professor and consultant in rehabilitation medicine at the University of Leeds, who runs a long-Covid clinic in the city. He also sits on the BSRM’s executive committee. “Fatigue is multifactorial, and there are some patients with deconditioning and weakness who might benefit from GET,” he said.
However, he added that GET could be counterproductive in those patients presenting with a “boom and bust” pattern of symptoms consistent with postviral fatigue. Individualised patient assessment is therefore essential. “We know long Covid has different patterns of presentation and future research will look into targeting specific rehabilitation approaches to specific subgroups,” he said.
Until this happens, ME/CFS patient advocates are urging people with long Covid to learn from their experiences of dealing with postviral fatigue, stressing the importance of “pacing”. This means listening to your body and balancing physical and mental activity with rest, rather than pushing yourself to boost stamina. “It doesn’t mean you don’t do anything, but if you feel you need to rest, you should stop what you are doing and rest,” said Dr Amy Small, who credits the approach with her ongoing recovery.