By David Tuller, DrPH
The graded exercise therapy/cognitive behavior therapy treatment paradigm for chronic fatigue syndrome—also imposed on those diagnosed with myalgic encephalomyelitis, CFS/ME, ME/CFS, and other variants–is like the undead. This concept keeps reemerging from the fetid intellectual swamplands that spawned it, no matter how many times it is revealed as nonsense.
Although the US Centers for Disease Control and Prevention removed the recommendations for these treatments almost three years ago, some medical organizations, like the Mayo Clinic, have continued to endorse such rehabilitative approaches. A few weeks ago, the Oxford Health NHS Foundation Trust posted—and quickly unposted—a coronavirus-and-fatigue pamphlet littered with debunked arguments on GET and CBT. And the Merck Manual [known in the UK as the MSD Manual] has posted a recently reviewed version of its online CFS information.
The Merck site has a page for consumers and one for professionals. Neither of them discusses the controversy over nomenclature or references myalgic encephalomyelitis. The consumer page, which was reviewed in April, starts like this:
“Chronic fatigue syndrome refers to long-standing severe and disabling fatigue without a proven physical or psychologic cause and without objective abnormalities found on physical examination or laboratory testing.”
In other words, Merck is presenting what is essentially the so-called “Oxford criteria,” based solely on the presence of fatigue with no other symptoms required. I guess Merck must have missed the 2015 report from the National Institutes of Health, which declared the Oxford case definition to be harmful and recommended that it be “retired.” Much further down on the page, Merck includes a reference to post-exertional malaise–the symptom widely agreed to be at the core of the illness–and mentions the 2015 case definition from the US Institute of Medicine.
This page includes some laughable statements, including this: “People may recover more fully if they focus more on what function they can recover than on how much function they have lost.” This claim, which suggests that patients’ attitude toward the illness could hasten or impede their recovery, is based on the ideations of investigators, not on solid data.
Merck also declares that CBT and GET have “helped some people” and “may be worth trying.” Here’s how it describes CBT: “Cognitive-behavioral therapy is usually a brief course of psychotherapy aimed at redirecting discouraging thoughts that could prevent the positive outlook that can help recovery.”
And here’s how it explains “graded exercise”:
“Excessive periods of prolonged rest cause deconditioning and may actually worsen symptoms of chronic fatigue syndrome. Gradual introduction of regular aerobic exercise, such as walking, swimming, cycling, or jogging, under close medical supervision (called a graded exercise program) may reduce fatigue and improve physical function. Formal, structured physical rehabilitation programs may be best.”
These suggestions could have been written 30 years ago by the pioneer members of the GET/CBT ideological brigades. As I’ve now written 6,571 times, there is no legitimate evidence to support the “unhelpful beliefs” behind these recommendations: i.e., that a positive outlook will somehow help or induce recovery from the illness, and that deconditioning has something to do with prolonging it.
The professional content on the Merck site, which is marked as having been reviewed in March of this year, presents a slightly more complex description of the illness. Although it endorses the GET/CBT paradigm as appropriate for some patients, it notes that some research has questioned the reported benefits.
Unfortunately, the page does not mention the CDC’s change of position on GET/CBT. It does not mention that the findings of PACE, the so-called “definitive” clinical trial of these treatments, have been convincingly refuted in the peer-reviewed literature. It does not mention that the revised Cochrane exercise review now explicitly notes that its findings might be different for those identified as having the illness under other case definitions.
It does include this gem: “To provide effective care, physicians must acknowledge and accept the validity of patients’ symptoms. Whatever the underlying cause, these patients are not malingerers but are suffering and strongly desire a return to their previous state of health. For successful management patients need to accept and accommodate their disability, focusing on what they can still do instead of lamenting what they cannot do.”
It is of course touching to learn that doctors might deign to consider the validity of their patients’ symptoms and to acknowledge that they are not malingerers. But the notion that patients are preventing “successful management” by “lamenting what they cannot do” rather than focusing on the positive sounds like blaming them for their own sickness. If treatments fail, then perhaps it’s just the patient’s fault for complaining too much.
That Merck believes these pages represent an accurate and medically up-to-date distillation of the state of play in this domain is disturbing.