By David Tuller, DrPH
For decades, Kumar & Clark’s Clinical Medicine has been a standard textbook for medical education around the world. Last month, Elsevier pubished the 11th edition. The miniscule section on what it calls “chronic fatigue syndrome/myalgic encephalopathy” is pathetic. This section is in a chapter called “General Hospital Psychiatry,” promotes “psychological symptoms” as a core component of the illness, and recommends the fraudulent PACE trial as “further reading.”
(The authors offer no explanation for their decision to use “encephalopathy” rather than the much more widely accepted term “encephalomyelitis.”)
Patient advocates have had concerns about this matter for a while. A petition “to request updating of the description of ME/CFS in Kumar and Clark’s Clinical Medicine textbook,” based on the 10th edition, was posted on change.org more than a year ago. It has racked up more than 10,000 signers. (An article on the ME Association website provides more details.)
Elsevier responded last February, noting that “the book’s editors are aware of the petition, and of the strength of feeling held by many ME/CFS patients and their friends and family members about the way the condition has traditionally been approached within the medical profession.”
In its response, Elsevier further noted that, for the upcoming version, “the editors have worked with the specialist chapter authors to produce content which addresses the concerns of patient groups, whilst being based on the range of published literature and contemporary treatment approaches within the field.”
Yeah, right.
The 11th edition does feature some modest changes corresponding to some of the requested changes. It now includes a mention of “ME”–albeit the wrong ME. It drops graded exercise therapy (GET) as a recommendation—yet it highlights the PACE trial as a reliable source of information, even though that piece of crap purported to prove that GET was effective. Etc.
In the new edition, the discussion of CFS/ME appears in a section of the General Hospital Psychiatry chapter headed “Medically Unexplained Symptoms and Functional Neurological Disorder.” In the text, these two groups are lumped together as MUS/FND, with general observations intended to apply to any clinical entity falling within the parameters of these categories. (In reality, FND is a subset of MUS.)
One paragraph is focused solely on CFS/ME, identified as one of several kinds of MUS. Here it is:
“Although several studies have demonstrated abnormalities in endocrine, neurological, and immunological parameters in patients with CFS, understanding of potential biological mechanisms underlying the condition remains poor. Historical approaches that have suggested that the disorder is ‘all in the mind’ are unhelpful and stigmatizing, and prevent the development of a beneficial therapeutic relationship between doctors and patients. A more helpful approach acknowledges the presence of both physical and psychological symptoms, with no assumptions about the underlying aetiology.”
This paragraph is full of misrepresentations. There are obviously far more than “several” studies demonstrating “abnormalities” in multiple domains. (What these studies ultimately mean is another discussion.) As far as “historical approaches,” it is ironic that the textbook suggests the “all in the mind” approach is a relic of the past even as it touts the PACE trial and embeds the illness within the chapter on “general hospital psychiatry.”
Finally, it would be nice if “no assumptions” were made about the underlying etiology. But that is obviously not what has happened with this illness.
The presumption of the biopsychosocial fantatics has always been that CFS, as they call it, was solely caused by unhelpful illness beliefs, which led to sedentary behavior, which led to deconditioning, and on and on. The two interventions—graded exercise therapy and cognitive behavior therapy—were presented as addressing these concerns and therefore potentially curative.
Whatever has been claimed more recently, the only role in this schema for “bio” was the notion that a viral infection could trigger the entire cycle. Beyond that initial event, the perpetuation of symptoms was said to arise solely from problematic and dysfunctional patterns of thought and behavior.
In any event, no one reasonably disputes, or has ever reasonably disputed, that patients experience “psychological symptoms.” I mean, why wouldn’t they feel depressed and distressed and anxious, given that they have a complex illness that no one seems to understand? The issue is not whether they experience such symptoms but whether psychological and associated behavioral factors are the root cause of their illness. This paragraph reads as if that debate were non-existent.
The subsequent sections are headlined “clinical approach to MUS/FND,” “communication of a diagnosis of MUS/FND,” and “approaches to treatment.” Not surprisingly, given the bias inherent in this chapter, there is no mention of the updated 2021 guidelines for ME/CFS from the National Institute for Health and Care Excellence, which rescinded recommendations for GET as well as for cognitive behavior therapy presented as anything other than supportive. Instead, these paragraphs in the textbook are full of biopsychosocial blah blah, like this:
“Delivering and explaining a positive diagnosis of MUS/FND is the stepping stone towards a successful management plan that may include guided self-help, CBT and input by several other members of a multidisciplinary team (e.g. physiotherapy or speech and language therapy, depending on the nature of the FND symptoms). Recovery depends on positive patient engagement with the process.”
The last sentence is classic in how it appears to lay the blame squarely on patients for failure to attain “recovery.” In this framing, if the treatment doesn’t work, the fault is clearly due to the patient’s “negative” engagement rather than to an inappropriate clinical approach.
I hope the petition to Elsevier gets a reboot based on this awful update.
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*As a side-note, the MUS/FND section claims that FND accounts for half of new neurology consultants. This is a ridiculous and untrue claim. The most ardent FND experts have regularly stated that 16% of new neurology consultations involve FND. And that figure itself was an exaggeration. The study used as the source actually found that 5.5% of new outpatient neurology patients were diagnosed with conversion disorder symptoms–i.e. FND, per later nomenclature–as several colleagues and I have pointed out in a published letter. I know of no subsequent research that has found a 50% rate among new neurology consultations.