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By David Tuller, DrPH
Since the coronavirus epidemic hit, people with ME have been concerned about the possibility of a secondary wave of post-COVID-19 cases of prolonged disease–especially given emerging evidence of neurological complications of the illness. Key investigators in the field, attuned to the same possibility, are planning prospective studies of COVID-19 patients to track whether some develop an ME-like condition. Such studies could provide significant insights into the pathophysiology of post-viral disease.
Others are taking a retro approach and falling back on stupid old habits. The Oxford Health NHS Foundation Trust–the agency that oversees NHS services in the Oxford area–recently posted a guide about coronavirus and fatigue that recommends, yes, graded exercise and cognitive behavior therapy. This pamphlet reads as if it emerged from a time warp. It’s the Rip van Winkle approach to health care–this crap could have been written 20 years ago. The pamphlet provides no indication that the author or authors are aware that the advice being dispensed has been contested fiercely in recent years–and that the National Institute for Health and Care Excellence is currently revising its outdated guidance for the illness.
The Oxford pamphlet was produced by an entity called the “psychosocial response group.” Yet when I searched the Oxford Health site for that term, nothing came up. So it is unclear who should take responsibility for what is written here.
The pamphlet gets it wrong from the start. Here’s the first paragraph: “This leaflet is one of a series about Coronavirus and mental health. The leaflets contain information about how the Coronavirus outbreak might affect your mental health, how to look after yourself, what to do if a problem persists, and where to find further information.”
That’s very nice. Has someone mentioned lately to the Oxford Health NHS Foundation Trust that this condition is not a mental health or psychiatric illness?
Hereâ€™s how the pamphlet describes what it calls “chronic fatigue syndrome”:Â â€œThe main symptom is persistent fatigue (tiredness) and exhaustion which can be severe and disabling.â€
The description allows for, but does not appear to require, any other symptoms. Among the other possible symptoms listed is â€œmalaiseâ€”feeling unwell or â€˜out of sorts,â€™ especially after exercise.â€
This is pretty close to so-called “Oxford criteria” for diagnosing CFS, promulgated almost 30 years ago. This case definition requires only fatigue to be present for a diagnosis. Recent case definitions of the condition (or whichever condition is meant by the other names used for these various case definitions) all require the presence of the core symptom of post-exertional malaise, or whatever this symptom is called.
Yet the new Oxford pamphlet does not specifically mention post-exertional malaise. The inclusion of â€œmalaiseâ€ as a possible symptom is an apparent nod toward the PEM concept, but a feeling of being “out of sorts” does not come close to describing the actual lived experience that patients routinely describe. This is like comparing a stubbed toe to being run over by a truck.
Per the Oxford pamphlet, many people who get CFS have personality traits that get them into trouble; those at risk post-COVID-19 apparently include “people who have very high standards, like to do things well and do not like to let other people down.” Such people, the pamphlet warns, “can push themselves very hard and do not allow themselves time to rest.â€
In fact, the pamphlet’s framing echoes the hypothesis that deconditioning is the prime cause of the devastating CFS symptoms–a hypothesis articulated way back in a 1989 paper co-authored by Simon Wessely and Trudie Chalder, among others. Hereâ€™s what the pamphlet posits about factors that can help precipitate CFS after a viral illness:
“*Resting too much, for example spending most of the day in bed or doing very little, will lead to loss of fitness and muscle strength. When you try to resume normal activities you may find you cannot do as much as you expect to do. You then rest more, causing further loss of fitness in a vicious cycle.”
*Sleeping for hours during the day can lead to general malaise and problems sleeping at night. This leads to more daytime fatigue and more resting, which causes more problems sleeping at night.”
*Not allowing yourself time to recuperate and get better, such as going back to work too soon or resuming normal activities before you are fully well.”
Letâ€™s be clear: There is no legitimate evidence that deconditioning and this purported â€œviciousâ€ cycle cause the disease at issue here. This hypothesis was fully tested in the PACE trial–what its lead investigators called the “definitive” study of the CBT/GET intervention paradigm. That experiment failed to generate the expected results. Unfortunately, the authors chose to publish their findings in prestigious journals only after engaging in multiple methodological and ethical lapses that violated core scientific principles.
Now this Oxford pamphlet has emerged from the intellectual swamp of the CBT/GET ideological movement to once more recommend these failed treatments for recovery from CFS. Havenâ€™t we been here before?
The pamphlet does offer pacing as an option. But it links pacing with â€œactivity management,â€ presenting it as means of breaking a supposed “boom-and-bust cycle” so that patients can gradually start increasing their energy output. Then, when discussion turns to graded exercise, there are laughable statements like this: â€œGraded exercise has been shown to be effective in reducing fatigue and getting back your fitness after CFS.â€Â The leaflet recommends that the chosen exercise be â€œperformed several times a dayâ€ and â€œperformed every day–good days and bad–otherwise the benefits of the activity already gained by your body will be lost.â€ Ok, then!
And hereâ€™s what is written about CBT: â€œCognitive Behaviour Therapy (CBT) is a form of therapy which has been shown to be helpful for CFS/ME. It helps you to identify thoughts and beliefs which maintain the problemsâ€¦CFS/ME may relate to longstanding problems such as depression, chronic worry, perfectionism or low self-esteem.â€
I mean, really. Isn’t this 2020? The notion that there are “thoughts and beliefs” that “maintain” patients in a state of illness should have been discarded with the failure of PACE. I plan to ask the Oxford Health NHS Foundation Trust for references for the (mis)information provided in the pamphlet. I will also ask aboutÂ the role of the agency’s “psychosocial support group.”