By David Tuller, DrPH
Whatâ€™s going on at the Mayo Clinic? It has been more than two years since the US Centers for Disease Control and Prevention (CDC) removed cognitive behavior therapy and graded exercise therapy as treatments of choice for the illness it now calls ME/CFS. And Mayo still seems not to have noticed that anything has changedâ€”unlike Kaiser Permanente, for example, which acknowledged earlier this year that it had been wrong about the illness.
For years, of course, CBT and GET were the CDCâ€™s most prominent recommendations. These recommendations were based on the reported findings of the now-discredited PACE trial and other research conducted by the GET/CBT ideological brigades in the UK, the Netherlands and elsewhere. They were promoted based on the unproven theory that people with the illness were seriously deconditioned because of excessive sedentary behavior, itself due to their â€œunhelpfulâ€ beliefs about having an underlying organic illness. GET and CBT were both designed to get people back to their regular activitiesâ€”through behavioral and psychological approaches, respectively.
Before the website change, the CDCâ€™s imprimatur meant that these two so-called â€œtreatmentsâ€ were essentially viewed as the standard-of-care in the US, despite longstanding complaints from many in the patient community that the science behind them was deeply flawed. Moreover, given that the core symptom of the illness is “post-exertional-malaise” or some version of that phenomenon, patients also noted that recommendations designed to increase energy expenditure were contra-indicated and potentially harmful. Yet when the CDC removed the recommendations, the agency did so quietly, making little effort to disseminate the information. Nor did the CDC explain that the treatments, and the theory behind them, had been discredited.
I wrote about the change in a blog post on July 10, 2017, not because the agency announced it but because I noticed a mention of it on a patient forum. When questioned at that time, the CDC claimed that it made the change because readers misunderstood what it had meant by CBT and GET. This answer could best be interpreted as a face-saving exercise, not the honest response people have a right to expect from the countryâ€™s lead public health agency. The CDC must have recognized that it could not defend the scientific integrity of the data behind the treatments. But it has consistently refused to criticize PACE and related studies, comment on the egregious flaws of this research, or apologize for the years it spent peddling questionable medical information.
Why does that matter? Because leading medical centers around the countryâ€”and that means you most of all, Mayo Clinic!–have still not gotten the message. On the â€œchronic fatigue syndromeâ€ pages on its website, Mayo continues to promote an outdated understanding of the illness. One possible cause listed is â€œdifficulty managing stress.â€ The site features a list of eight possible symptoms, including â€œextreme exhaustion lasting more than 24 hours after physical or mental exerciseâ€â€”yet it does not indicate that this symptom is actually required.
And here is what the Mayo website currently states in its section on treatment:
The most effective treatment for chronic fatigue syndrome appears to be a two-pronged approach that combines cognitive training with a gentle exercise program.
- Cognitive training.Talking with a counselor can help you figure out options to work around some of the limitations that chronic fatigue syndrome imposes on you. Feeling more in control of your life can improve your outlook dramatically.
- Graded exercise.A physical therapist can help determine what exercises are best for you. Inactive people often begin with range-of-motion and stretching exercises for just a few minutes a day. Gradually increasing the intensity of your exercise over time may help reduce your hypersensitivity to exercise, just like allergy shots gradually reduce a person’s hypersensitivity to a particular allergen.
The suggestion that increasing exercise will reduce â€œhypersensitivityâ€ in the same way as gradual exposure to an allergen sounds logical but is not based on the current science. The use of the term “hypersensitivity,” in fact, parallels the speculative but unproven arguments about â€œcentral sensitizationâ€ advanced by proponents of these rehabilitative therapies for this illnessâ€”especially now that they seem to have largely abandoned the bogus â€œdeconditioningâ€ hypothesis. While the â€œcognitive trainingâ€ described appears to diverge somewhat from the form of CBT promoted in PACE, the suggestion that this intervention leads to a â€œdramaticallyâ€ improved â€œoutlookâ€ in people with this illness is not borne out by any legitimate or robust research that Iâ€™m familiar with.
The pages on the Mayo website are dated January 5, 2018. Two of the references listed are the CDCâ€™s website and the Cochrane review of exercise therapies. As indicated, both were accessed online on June 7, 2017–a few weeks before the CDC appears to have removed GET and CBT from its recommendations. Moreover, the Cochrane reviewâ€”which patients have long recognized as a disaster–has since been republished with the findings revised downwards, and it remains the subject of heated debate.
Other Mayo materials have reflected this misdirection. An edition of the Mayo Clinic Guide to Self-Care, viewed last year in the clinic bookstore, included the following statement on chronic fatigue syndrome:
“Because people with chronic fatigue syndrome may become out of shape, which perpetuates the fatigue, physical activity or physical therapy are crucial. These can help prevent or decrease muscle weakness caused by prolonged inactivity. In addition, you may benefit from cognitive behavioral therapy to help you deal with the illness and the limitations it creates.”
It is unclear whether the Mayo Clinicâ€™s current practice has evolved more than its website and text materials, or whether these have any relationship at all to what goes on during clinical encounters. In any event, the website would, or should, discourage anyone who knows much about the field from seeking help at this world-renowned medical center. Mayo has an obligation to keep track of substantive developments in the field and update its public information accordingly. And certainly the CDC should have reached out years ago to Mayo and other major health care providers and informed them of the big shift in approach.
For its part, the CDC should now at long last provide a straightforward and credible explanation for why it dropped references to PACE and the recommendations for CBT and GET in the first place. No one actually believes the agencyâ€™s transparently self-serving argument that people misunderstood what it meant when it recommended CBT and GET. Public health officials have an obligation to acknowledge when they have gotten things wrong and to apologize for their mistakes rather than blaming others for misunderstanding their message.