By David Tuller, DrPH
Emily Mendenhall’s new book, Invisible Illness: A History from Hysteria to Long COVID, has caused a bit of an uproar in some circles. Mendenhall, a medical anthropologist at Georgetown University in Washington, D.C., covers a range of what she calls “complex chronic illnesses,” including ME/CFS, fibromyalgia, Lyme disease, and so on. Last month, an excerpt was posted—and then removed—by The Sick Times, a publication that covers Long COVID.
The publication removed the excerpt after complaints that the book embraces the so-called biopsychosocial model embodied in the fraudulent PACE trial, which purported to prove that cognitive behavior therapy (CBT) and graded exercise therapy (GET) were beneficial interventions for ME/CFS. In her book, Mendenhall presents these various illnesses as serious medical conditions. However, she promotes the importance of non-medical interventions over what many or most ME/CFS patients and advocates most desperately want—a robust search for effective and evidence-based biological treatments.
In a previous post, I only discussed the book’s second chapter, titled “The Case of Chronic Fatigue,” which included a section related to me and my work. I felt that the parts involving me were accurate. I also indicated that Mendenhall’s acknowledgement of having altered the text because of reported legal threats from Professor Sir Simon Wessely raised questions about the credibility of that chapter. While the chapter highlighted multiple criticisms of PACE, it also called CBT “moderately effective” in treating ME/CFS. That claim is untrue, given that PACE and related studies violated core principles of scientific investigation and produced biased and unreliable results.
It was perhaps brave of Mendenhall to have shared her experience; I assume others have given in to similar pressure but remained silent. Like Mendenhall, I have also been the target of legal threats, or perhaps what could be better characterized as legal verbiage and pre-threats, from other members of the CBT/GET ideological brigades. It is definitely not fun. I sympathize enormously with anyone who has been through this sort of scary situation. Nonetheless, caving to these bullies, while understandable, cannot be condoned. Capitulating to their demands only reinforces their power to impose their bogus, self-serving and potentially harmful views on others.
Invisible Illness features touching and in-depth portraits of patients with a range of conditions, including ME/CFS. Mendenhall is a sympathetic listener and takes her subjects’ medical concerns seriously. The book’s main takeaway point, in my view, is that it totally sucks to have an “unverifiable” illness–that is, one that cannot currently be diagnosed through biological tests. Doctors don’t believe you and in any event have no proven remedies to offer. Private and government health insurers refuse to cover costs. Employers won’t make accommodations. Even family and friends might dismiss your symptoms as imagined or exaggerated. As Mendenhall documents in Invisible Illness, such rejection can be soul-crushing as well as damaging to physical and mental well-being.
None of these observations are new or unexpected. But they can never be emphasized enough. Mendenhall is passionate about the importance of treating patients with dignity and respect, which they often don’t receive from clinicians, colleagues and even loved ones.
That’s the positive part. If Individual Illness features a sustained and coherent argument beyond that, it is harder to find. The book is not well-organized; it reads as something of a mish mosh. Similar ideas are presented in multiple chapters without building to any particular conclusion—apart from Mendenhall’s final vision of a more humane and holistic approach to providing health care.
Mendenhall makes some basic mistakes. For example, in discussing post-exertional malaise (PEM), Mendenhall refers repeatedly to “post-exertional malaise exacerbation,” giving it the acronym PEME. But there is no such thing–or if there is, I’ve never heard of it. Some clinicians and patients prefer an alternate name for PEM–post-exertional symptom exacerbation (PESE). Mendenhall seems to have confused PEM with PESE and then conflated the two to create PEME. This sort of substantive error does not inspire confidence.
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The metaphor of “thresholds”
Mendenhall relies heavily on the construct of “thresholds,” one of the animating conceits of Invisible Illness. And as critics have suggested—sometimes in very harsh terms—this approach does in many ways resemble the biopsychosocial model. Symptoms in these illnesses are not generally viewed as arising from disruptions of specific biological pathways but from the entirety of an individual’s past and current life.
As she writes:
“I use the metaphor of thresholds to explain the way many small vulnerabilities might build up until someone’s combination of factors creates imbalance. For instance, it might be that for some people a viral infection pushes them over a threshold into a corporeal imbalance, pushing the autonomic nervous system out of kilter and reverberating through multiple systems at once. However, the problem is never that one infection. Instead, these exposures might be tied to multiple insults, from family histories, mold and chemicals, metabolic irregularities in the blood, and previous viruses and bacteria that stay dormant and may reactivate in the nerves, gut, tissues and brain. It is also our social histories, and traumatic experiences in particular, that become imprinted on and can wear down our immune, nervous, and digestive systems…Thresholds are both temporal and corporeal—they are the moment equilibrium becomes disrupted, and interdependence breaks down, causing a slow and prolonged unraveling of multiple systems.”
It is self-evident that people’s state of physical and emotional well-being reflects multiple factors, and that a viral infection might have a worse impact on those with pre-existing health problems. However, while Mendenhall presents the thresholds concept as a metaphor, she seems to regard it as a valid and legitimate biological model of how the body works—which it is not. The metaphor doesn’t lend itself to scientific testing and assessment , nor can it be used to determine which treatments actually work and which ones don’t.
Medical anthropology is often focused—with lots of good reasons—on the deficiencies and limitations of biomedicine. Mendenhall shares that worldview. She believes that, in these conditions, discrete and identifiable pathophysiological dysfunctions are not necessarily the main source of the reported symptoms. Instead, much or most of the morbidity is attributed to a goulash of other factors, such as previous psychological and emotional trauma and the effects of a chronic and over-active stress response. A viral infection like COVID-19 merely represents a tipping point—“the moment equilibrium becomes disrupted.”
Given that, the search for pharmaceuticals to address errant biological mechanisms is not framed as an essential project but as a rather limited, parochial and perhaps ultimately pointless endeavor. Instead, Invisible Illness highlights the non-medical ways in which patients try to “calm the body,” rectify the hypothesized “corporeal imbalance,” adapt to their disabilities, and find value in their lives. As Mendenhall writes: “While some people do go into remission from many of the conditions I discuss in the book, people are rarely cured from them…Instead, many learn how to live with their radically transformed selves and set a new pace to their life, often employing a plethora of treatment strategies to boost energy and reduce symptoms.”
This is undoubtedly true. But the implication seems to be that patients who yearn for a cure do not also seek out and find ways to enrich their lives within their functional capacities. This is a false dichotomy. Those I’ve spoken to fervently hope for proven medical treatments even as they do what they can to render their lives meaningful in the present. The two are not mutually exclusive.
Mendenhall’s final call is for a kinder, gentler health care system that provides all-encompassing rehabilitation services for complex chronic illnesses, offering whatever “outside the box” and alternative interventions patients find appealing. It sounds very relaxing! But even if that well-meaning approach could help “calm the body” and refresh the soul, it would not target or resolve the underlying pathologies driving these illnesses, whatever they turn out to be. (That obviously doesn’t matter if you don’t believe that underlying pathologies are the main drivers of these illnesses.)
Most notably, Mendenhall’s vision does not include a call for ramping up research programs into biological causes and treatments of these complex chronic conditions. That’s what patients—at least the ones I know—desire more than anything. Given this absence as well as the book’s overall orientation, it is not surprising that many in the patient community have flatly rejected it.
Thank you for this thoughtful evaluation.