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.
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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.
Comments
9 responses to “Merck Manual Still Disseminates GET/CBT Advice”
Thank you David for highlighting the persistence and subdued messages that infiltrate in the medical body, which still prevents biomedical research to be fully accepted.
To quote the last section: “ 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.” This basically is translated as ‘Acceptance and Commitment” therapy. This is currently taught to patients as part of the education program, and construed as ‘health care’.
If we could drop the psycho-social and simply focus on what is happening in the body, we’d already be better off.
No other illness gets this kind of nonsense pseudo-treatment.
Just because the researchers haven’t found a specific measurable (such as a particular virus) that causes all the symptoms we barely manage to survive, only means that they haven’t yet, not that it doesn’t exist, as for EVERY OTHER DISEASE that once had an unknown cause.
The arrogance of the position – ‘we have already discovered every disease that exists’ – is unbelievable.
Keep their feet to the fire.
It is also worth pointing out that I believe NOTHING that comes out of MAYO because they don’t know what they’re doing in the ONE area I have a lot of expertise. It taints everything else they produce or sell.
Nobody can say that doctors don’t go above and beyond for their patients, but in medicine there is also a sneering us-and-them mentality that represents the worst of the profession, looking down on the sad less-educated masses (and especially women) as not having the backbone and fibre that they have. It’s a bit like the UK government apparently not believing that the British people would tolerate coronavirus lockdown, because it was the British Establishment that won the war, don’t you know.
Recent observations in my own, long, journey of illness have led me to examining other areas of medicine where misunderstandings (let’s be generous) about disease presentation can be observed. The Mayo Clinic is, yet again, way behind the curve wrt the emerging understanding of another disease, and behind in a way which continues a gender bias against women’s suffering in that particular disease. I have yet to fathom how the Mayo Clinic maintains its prestigious reputation.
Wrt ME though: maybe using tight criteria would help? The wooliness of most criteria are ripe for skewing in the way you have described above. The tighter and more specific the criteria the better, which imo means ICC. Almost seven and a half thousand people agree with me : https://www.change.org/p/the-us-department-of-health-and-human-services-cdc-adopt-the-distinct-disease-myalgic-encephalomyelitis-me-as-defined-by-icc-now
Will Merck ignore the CDC..? Will Mayo ignore the CDC..? I hope that people with ME who are severely ill will be protected by their governments. Who else have the power to do so..?
“Fetid intellectual swamplands”. Yes! That’s exactly what they are – and the fact that the likes of Merck continue to muddle around in the bog is highly disturbing.
Why is a patronising interview allowed to be called ‘therapy’ in any case?
Somebody should investigate this whole gaslighting con: talking at people is not therapy, so how did it get to be generally accepted as if it was? Psychologists do not have special powers (Except for Derren Brown, but we can’t all get to see him. 😉 ).
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Somebody should investigate this whole gaslighting con: talking at people is not therapy, so how did it get to be generally accepted as if it was? Psychologists do not have special powers (Except for Derren Brown, but we can’t all get to see him. ).
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