SSix weeks after contracting Covid-19 in April, Dr Amy Small felt well enough to attempt a walk through Holyrood Park in Edinburgh with her young family. His children wanted to climb Arthur’s Seat – the steep hill at its center. Thinking it would be OK if she walked slowly, Small agreed. “It put me to bed for several days afterward,” she says.
In June, she returned to work as a general practitioner, for only one half day: “It completely upset me for 10 days and it took two months to get back to where I was before that,” she says. . “I couldn’t speak one day due to fatigue and had a hard time staying hydrated because I didn’t have the energy to eat or drink.
Before Covid, Small ran 5 km at least three times a week. Now even opening your eyes is a hassle some days.
Based on current estimates, around 10% of patients with Covid-19 develop lasting symptoms, one of the most common being fatigue. The underlying mechanism is still unclear, but possible explanations include a reduction in oxygen supply to tissues caused by damage to the heart or lung, or muscle weakness due to prolonged bed rest.
However, some doctors are increasingly concerned about the overlap between the long Covid and another disease largely triggered by a virus: “It is extraordinary to see how many people are suffering from postviral syndrome which is very similar to encephalomyelitis myalgic / chronic fatigue syndrome, ”the senior US public health official said. official, Dr Anthony Fauci, in July. “They just don’t get back to normal energy or a normal sense of good health.”
Similar to people with ME / CFS, many patients with long Covid report headaches, brain fog, sleeping problems, accelerated heart rate, joint and muscle pain, and fatigue . Some also suffer from a relapse of fever, muscle pain and exhaustion, known as “post-exercise discomfort,” if they exercise beyond their capacity.
“There are so many similarities between the long Covid and the ME / CFS that it leads me to believe that the underlying pathology is probably the same – except that the long Covid presents itself as an epidemic, whereas ME / CFS s ‘is presented very sporadically, and by no means in such large numbers in such a short period of time, ”said Dr William Weir, infectious disease consultant with a particular interest in ME.
Another thing that 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 long-standing recommendation that patients with ME / CFS be prescribed Graduated Exercise Therapy (GET), which involves an increase gradual physical activity to gradually develop tolerance. Patient advocates have long argued that EEG can cause lasting damage to people’s health.
The new draft guidelines do not cover fatigue linked to Covid. This could be covered by separate ‘Long Covid’ guidelines which are expected next month. Still, patient advocates fear GET will cause similar harm to people with long-lasting Covid.
“Although NICE has previously 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 a Graduated exercise or its equivalent to patients, ”said Sian Leary of patient advocacy group #MEAction.
“I have certainly seen a lot of posts from patients in long-form Covid forums where doctors have told them to ‘push themselves a little bit more,'” Small said. This does not surprise her. “During the training of general practitioners we were told that GET was what one would suggest to a person recovering from postviral illness like ME – so I guess when general practitioners see someone who has persistent symptoms of Covid, which is what many of them are turning to. It will take time for these new CFS / ME guidelines to be filtered out. “
Olivia Hoare is an occupational therapist who fell ill with suspected Covid-19 in May and still suffers from severe fatigue. On a “crash” day, she finds it hard to sit in bed long enough to drink a cup of tea. “I spoke to several general practitioners who were sympathetic and listened to,” she said. “However, they asked me to ‘increase my aerobic exercise.’ A GP told me to try a 15-minute walk, then a 10-minute run the following week. Having a close family member with ME, she ignored these suggestions: “My concern is that people are heeding this medical advice and [themselves] more trouble, ”she said.
The NHS website Your Covid Recovery is asking people with Covid-related fatigue to stay active because it “helps maintain energy levels”. A spokesperson said the website will be updated to reflect upcoming NICE long Covid directions if needed. For now, the website suggests people start by walking for five minutes without stopping, gradually increasing this by a minute or two each day. “You may notice that your fatigue increases and your shortness of breath increases at first, but these should get better the stronger you get; it’s a normal response to getting more exercise for all of us, ”he says.
“While it sounds sweet, telling people to keep going even as their fatigue increases is dangerous for those with post-exercise discomfort,” said Helen McDade, #MEAction volunteer.
Even so, many healthcare professionals insist that gentle, gradual exercise is a crucial part of recovery from Covid-19.
Fatigue is not only associated with ME / CFS, but with many inflammatory diseases. “Time will tell if the fatigue from the long Covid is akin to the fatigue of CFS, or more to the fatigue of multiple sclerosis or rheumatoid arthritis,” said Elizabeth Murray, professor of e-health and primary care at University College London. “People with long-term Covid have other issues as well, and there is no doubt that gentle exercise helps with shortness of breath and depression. If you haven’t used your muscles for two weeks because you are too sick, they will have deconditioned.
By gradual exercise, it means to start very slowly and gradually build up. She is the originator of a Covid rehab app used by patients discharged from Barts Hospital in London who are still showing symptoms. Graduated exercises that gradually increase in intensity are part of the treatment.
The British Society of Rehabilitation Medicine also mentions exercise as a key part of Covid rehabilitation: “All patients will likely need to exercise, to overcome deconditioning, improve [lung] function and any neuromuscular complications, ”said a recent report.
“It is essential to recognize that not all patients with long-lasting Covid will behave like CFS,” said Dr Manoj Sivan, clinical associate professor and consultant in rehabilitation medicine at the University of Leeds, who runs a long-term Covid clinic in the city. He also sits on the BSRM executive committee. “Fatigue is multifactorial, and some patients with deconditioning and weakness could benefit from GET,” he said.
However, he added that GET could be counterproductive in patients with a “boom and bust” symptom pattern consistent with postviral fatigue. Individualized patient assessment is therefore essential. “We have known for a long time that Covid has different presentation models and future research will look at targeting specific rehabilitation approaches to specific subgroups,” he said.
While waiting for this to happen, ME / CFS patient advocates are urging people with long-standing Covid to learn from their experiences dealing with postviral fatigue, stressing the importance of ‘rhythm’. It means listening to your body and balancing physical and mental activity with rest, rather than pushing yourself to increase your endurance. “It doesn’t mean you’re not doing anything, but if you feel like you need to rest, you need to stop what you’re doing and rest,” said Small, who credits the approach with her continued recovery. Earlier this month, she returned to work and managed a half-day of consultations with patients. “It took me twice as long as before, but I made sure to stop for a cup of tea,” she said. “It was great.”