Many patients with ‘long’ COVID are experiencing extreme fatigue, a situation that has re-polarised approaches to treatment and rehabilitation. Melanie Newman reports
This is an edited version of an article that originally appeared on The BMJ https://www.bmj.com/content/373/bmj.n1559
“I submitted the first positive trial of cognitive behavioural therapy [CBT] as a treatment for chronic fatigue in the ’90s,” recalls Michael Sharpe, a professor of psychological medicine who was then a lecturer at Oxford University. “Next thing, my head of department got an unsigned letter, sent to The BMJ, saying that the research study was made up.”
It was the start of a lengthy campaign to prevent and undermine his research by some advocates of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) who object to suggestions that their illness has a psychological element.
A decade after publication it seems unlikely that a consensus will ever be reached. The National Institute for Health and Care Excellence has since reviewed its guidance on ME/CFS, and the draft guidance expresses concerns about inappropriate use of exercise and CBT, stating that the evidence is mixed or unclear.
Tensions have now resurfaced with the advent of the pandemic and “long” COVID or post-COVID symptoms. As many as 376 000 people in the UK report symptoms more than 12 months after the first onset of COVID-19, often experiencing extreme fatigue along with a wide range of other symptoms.
Clinicians report a complex picture. Patients with long COVID are a diverse group, and it’s hard to know what treatment path to put them on. Finding the right balance between gentle activity to avoid deconditioning and not triggering post-exercise malaise is important in each patient. But the advice given, the research conducted, and how it is communicated have become highly sensitive issues.
The BMJ has spoken to clinicians and academics who have been challenged over their views on treatment of long COVID, or their research intentions, where “exercise” has become a toxic term for some. Clinicians working with long COVID patients have also told The BMJ that, despite the challenges, long COVID provides an opportunity to progress the understanding of postviral syndromes and to acknowledge that they are a very real condition.
Challenged for speaking out
The pandemic has seen Sharpe back in Oxford, helping to set up a multidisciplinary long COVID clinic involving medical specialists, physiotherapists, occupational health practitioners, and psychologists. Clinics of this sort, with a similar range of clinical expertise, have been set up around the UK.
The insurance company Swiss Re—with which Sharpe makes clear that he has no financial link—asked him to do a presentation on early observations at the clinic. The slides from his talk showed that long COVID encompasses a range of conditions, with symptoms influenced by biological, psychological, and social factors, including media coverage, and that it has some similarities with CFS/ME.
“We need to balance ‘keeping an open mind’ with a pragmatic approach to management,” the slides advised. “Patients need to feel listened to and believed—physicians must manage uncertainty.” Referencing the Pace trial, they added, “At present the best treatment is psychologically informed rehabilitation.” However, while most patients will improve, “there is likely to be some long term disability.”
Sharpe’s inclusion of the Pace trial in his presentation—and, as an example of the role of media coverage, a quote from the Guardian journalist George Monbiot—set the hares running. In April Monbiot wrote a follow-up piece that began, “A super-spreader has been identified . . . it’s me.” He went on to rehash criticisms of the Pace trial without mentioning that they had been investigated by the Health Research Authority.
Many readers castigated Sharpe for suggesting that the disease was “all in the mind” or created by the media, while others defended him on the same basis. One patient said in the comments section, “As someone who is lying in bed, yet again unable to work and in agony due to long COVID, I find this professor’s comments so hurtful. This is a serious physical illness, not some social hysteria.”
Other doctors who have entered the debate have quickly found themselves under fire. Trish Greenhalgh, professor of primary care at Oxford University, commented on exercise and the Pace trial at a public webinar on long COVID, hosted in January by the Canadian Institute of Musculoskeletal Health and Arthritis. Her remarks are not publicly available, but Greenhalgh says that she summarised the controversy and that her position was misrepresented as pro-GET; however, other attendees say that she went beyond this and criticised CFS/ME activists.
A short while later she received an email from the organiser of another online conference at which she was due to speak about long COVID. An ME advocate had contacted the organiser to complain about Greenhalgh’s participation on the basis of her “maligning characterisation” of CFS/ME patients and her “promotion of discredited and harmful research.” The message concluded, “Dr Greenhalgh is a patient safety threat to all Canadians living with ME and long COVID,” and it asked for her removal from the speaker line-up. The organiser told Greenhalgh that it knew people in the UK with similar experiences who had subsequently refused to have anything more to do with CFS/ME.
In the spotlight
But few opinions on long COVID have proved as contentious as those of Paul Garner, professor at the Liverpool School of Tropical Medicine. A few months after contracting the virus in March 2020, and after a period of fatigue and other symptoms of long COVID, Garner, who had previously been extremely fit, felt a little better, went for a long cycle ride, and took part in a high impact exercise class. He immediately relapsed.
Experiencing fatigue and what he describes as “brain fog,” he found the medical literature and guidance “pretty hopeless” on convalescence, while the CFS/ME literature was “very helpful.” It explained that he was experiencing “post-exertional malaise”: a hallmark symptom of ME/CFS in which exercise triggers a worsening of symptoms.
Garner took advice to accept the limits imposed by the virus. The ME Association recommends “pacing”: slowly building up activity levels while monitoring one’s response to exertion and limiting activities accordingly to prevent post-exertional malaise. It says that vigorous exercise should be avoided until recovery has been complete for some time.
He attempted pacing but struggled to discover a pattern between his activities and his symptoms that might help him recover. Three months after contracting COVID, he says, he was unable to get out of bed for more than a few hours each day. “I kept trying to convince myself I was getting better, but I wasn’t, and I became too insecure to do anything,” he explains.
Weeks turned into months. A CFS/ME advocate wrote an open letter to people with long COVID telling them to “brace yourself,” as “you might not end up being sick for a couple of months or a year or even five years. Think decades. Maybe even the rest of your life.” Garner says that he became stressed, locked into a pattern of symptom monitoring to prevent relapses and an unconscious fear of “overdoing it.”
He then spoke to a recovered CFS/ME patient, who committed to helping him recover. Core to this was a compelling explanation of what was happening in relation to the brain and body, which, he says, “changed my understanding of the symptoms I was experiencing.” The support included a credible explanation of his symptoms, his hope of recovery, and techniques to reduce his symptoms and stress. He went on a short bike ride and then, under physician supervision, increased the lengths of his ride over several weeks—a process that he says was essentially GET. “It stopped me doing too much,” he says. “It was very gradual.” He progressed to full health within a few weeks.
Garner believes that the non-specific concept of post-exertional malaise can cause patients to fear activities and overexertion. He also suggests that the malaise after exercise is normal early on but that it then becomes a learnt automatic brain response.
“I think it is really important not to emphasise post-exertional malaise as if it is a disease,” he explains. “Early on I got suckered into it as something that might never go away. Part of my recovery has been around changing my thoughts around different body signals. If you see any signal as abnormal you feel insecure or get stressed, the most minor feelings get exaggerated by your brain, and you take to your bed.”