By David Tuller, DrPH
A week ago, Britainâ€™s National Institute for Health and Care Excellence published its new, evidence-based guideline for ME/CFS, which recommended against graded exercise therapy and cognitive behavior therapy offered as curative rather than as supportive care. Not surprisingly, this event creates some public relations problems for members of the CBT/GET ideological brigades, who have spent years promoting their dysfunctional beliefs that their favored interventions can cure the illness.
More recently, as protests against these treatments have gained steam, the investigators have tempered their claims without acknowledging that the underlying hypothesis is bogus. The hypothesis posits that patients are possessed by delusions of having an organic illness but are in fact severely deconditioned. The new guideline rejected this construct with its recommendations against any interventions based on these dubious speculations. In other words, this approach no longer has any credible scientific rationale, although the ideological brigades refuse to acknowledge this new and uncomfortable reality.
So what does that mean for, say, Kingâ€™s College London, which emits a geyser of sub-par work in this field and is home to Professor Trudie Chalder, a lead investigator of the PACE trial? KCL has touted and sometimes flagrantly misrepresented the results of Professor Chalderâ€™s studies. Given that NICE has essentially relegated the CBT/GET treatment paradigm to the dustbin of research history, the university might have to reconsider how it presents key information.
For example, why are there still active pages like this one hosting an article headlined â€œCBT for chronic fatigue syndromeâ€? Hereâ€™s the sub-head: â€œOur researchers were among the architects of bespoke talking therapy for chronic fatigue syndrome, which is now one of two treatments recommended in the UK.â€
Hm. Not quite accurate at this point. Keep up, KCL!
Beyond the sub-head, the entire content of this page is no longer operative. In the article,, Professor Chalder spouts the same banalities she has spouted for years no matter how much the research base undermines her point. Hereâ€™s how she explains things:
“‘People often believe that if they donâ€™t rest, their symptoms will get worseâ€™, says Professor Chalder, â€˜yet extended periods of rest can make people feel more tired and unwell by weakening muscles and disturbing the body clock.â€™
â€˜We think that what starts the fatigue is not the same thing that perpetuates the symptoms,â€™ she says. â€˜People might initially develop the fatigue as the result of an illness, such as a virus, or after a period of stress. But once triggered, the fatigue is maintained by other factors, including some coping styles.
â€˜Beliefs and attitudes towards illness are important in many physical and mental conditions. In CFS, fear that exercise or activity may make symptoms worse can hinder recovery and inadvertently perpetuate the symptoms.â€™”
What she is saying might be true for people with idiopathic fatigue, or fatigue linked to depression or other mental health issues. While smart observers have known for years that this is all bunk when it comes to ME/CFS, NICE has now officially rated the main evidence for the effectiveness of these interventions to be of â€œvery lowâ€ or merely â€œlowâ€ quality. (Of course, Professor Chalder and her allies disagreeâ€”that is to be expected. They would have every motivation to defend themselves against this resounding and humiliating public repudiation of the work in which they have invested much of their professional lives.)
Then there is what I sometimes think of as â€œPACE pornâ€™â€”the knee-jerk praise bestowed on this purportedly definitive study: “Our researchers were involved in the landmark PACE trial, which showed that CBT and GET for CFS were more effective and more cost-effective than adaptive pacing therapy â€“ where people balance rest with activity â€“ or specialist medical treatment. One year, after a course of CBT or GET, a fifth of people had recovered and were able to partake in life without significant fatigue.”
For those who have the stomach, here’s the link to the whole article–complete with the photo of the young woman leaning on her academic notebook. I guess they couldnâ€™t find the photo of the young woman glancing wearily upward with the back of her hand against her forehead?