Wessely, Mendenhall and the Reproduction of Medical Power

How Invisible Illness Missteps on Holism, Psychologisation and Epistemic Capture

A Golden Opportunity Missed

Invisible Illness by Emily Mendenhall could have been a holy grail for the community: a person with epistemic authority, a strong social ethic, inspired to write from a personal and relational experience of Long Covid.

Sir Galahad and the Holy Grail, Edwin Austin Abbey

One can sense the purpose and dedication in Mendenhall’s voice. She interviewed hundreds of people, including key figures from the advocacy landscape. A significant proportion of the book is passionate and meticulously researched; the chapters that relate the history of digital activism and hysteria are particularly astute and outstanding.

Then the revelation appeared that Simon Wessley had legally threatened Mendenhall after Dr Elke Hausmann’s excellent review of Invisible Illness. We have decided to publish a follow-up article for the record, as we have been dealing with the issue primarily online.

Mendenhall, in her response, Bluesky Blowup, claims she does not psychologise - this needs discussing and we advance three critiques: first, that Invisible Illness does reproduce holistic epistemic harm; second, that Wessely’s legal intervention materially shaped the book’s framing, exemplifying the sustained epistemic capture of psychiatrists; and third, that interpretive anthropology, when unrestrained, becomes a vector of medical gaslighting.

Fatal Flaw

Invisible Illness has a fatal flaw that flips it from identifying harm to causing it. In arguing for people with complex chronic conditions, Mendenhall perceives the root cause is biomedicine and its reductionist, cold gaze. To counter this, she argues for a wider and more holistic approach by positing a bodymind and thresholds/dysregulation model:

…helps us think about how sickness emerges and is embodied. It requires us to push back against dominant narratives in medicine that focus on singular diseases and clear cut pathologies. Instead, thinking of thresholds provides us with a much more holistic story of why people get sick and how people engage in a path to recovery. (Mendenhall).

Mendenhall responded to critique of her thresholds theory, but still fails to grasp that it is the inclusion of misguided holism and incorporation of the biopsychosocial model that is the driving force of medical silencing and gaslighting.

The book repeatedly reframes illness through interpretive, trauma-inflected, and deregulatory models that lack evidentiary grounding and resembles the BPS approach - and most importantly, are not falsifiable.

People perceive these threats differently and thus such perceptions and physiological responses can differ and affect people in significant and divergent ways. (Mendenhall).

This is a misunderstanding. What patients have been advocating for is an improved biomedical approach that necessitates urgent ring-fenced funding to determine the pathophysiology and therefore treatment.

God of the Gaps

We would go as far as saying that Mendenhall rushes hubristically to fill the gap of explanation with her dysregulation and thresholds theory. This ‘god of the gaps’ fallacy is precisely the same as those who propagated the psychiatric cognitive behavioural model for ME/CFS. It is this failure of restraint, humility and fidelity to evidence that is deeply problematic for the community.

Even though Mendenhall frames her theory in biological language, this is not biological evidence. She is insistent that because her framing is biological she is not psychologising - but this is a category error (see our article). Psychologisation has never meant “imagined” or “not real" or "not physical". There is no insistence on dualism, no insistence on mental purity from us - the issue is how these integrated bodymind/mind-body theories have been used to manage uncertainty, harm and dissent. This is the modus operandi of hysteria.

In essence, like many superpowers, Mendenhall’s strength - her anthropological insight - is also her weakness. Anthropology excels in widening the frame, and Mendenhall does valuable work in building an ethnography by opening a space for people to tell their stories. But in Long Covid and ME, restraint matters more than disciplinary reflex. If Mendenhall had applied an anthropological power lens to the matter of how medicine and patients have been undercut by those critically invested in the BPS model - then we could have had a tour de force.

Each society has its regime of truth, its ‘general politics’ of truth.
Michel Foucault, Power/Knowledge (interviews, 1972–77).

Wesselyan Machinations

An important juncture occurred in the discussion of Invisible Illness on Bluesky when Mendenhall revealed that Simon Wessely had threatened her with legal action when she was in the prepublication phase of a journal article that referred to him. She elaborated that in Bluesky Blowup that this spilled over to the book, as under pressure she dropped the article and cut significant narrative out of Invisible IlIlness regarding psychiatry, Wessely and PACE.

This must have been a challenging and distressing moment for Mendenhall. To be clear, it was not under her directive that the article was sent to Wessely, but a mistake from a junior editor of the journal. That it was sent again to him indicates, as Dr Diane O’Leary notes:

…the power he has over ME discourse is certainly not consistent with usual standards for peer review. (Bluesky Blowup, Mendenhall).

But this mortally wounds the book because Mendenhall becomes a neutral narrator of the PACE trial and tragically endorses CBT as still being moderately effective for ME, contrary to the revised NICE Guidelines of 2021 and patient testimony.

…improving mood disorder was not the reason why CBT remains a moderately effective treatment for CFS. (Mendenhall).

Throughout the chapter, the stereotype of angry activist patients and cool, rational medical professionals is reinforced. In her both-sideism, Mendenhall does not recognise that this episode epitomises the power dynamics of the whole ME scandal. Titling her response Bluesky Blowup didn’t help negate this stereotype either.

Mendenhall recounts that:

I found his feedback very interesting in part because he wrote so freely, emotionally, and extensively. I spent a great deal of time responding to his 17 page critique and very thoughtfully addressed his comments. (Bluesky Blowup, Mendenhall).

Yet, with the clear conflict of interest and Wessely’s central involvement in some of the darkest moments of ME history, it was unfortunate that boundaries were not maintained to protect Mendenhall, her writing and the community.

Representation

This silencing is reinforced as the stakes are not clearly visible in Invisible Illness because Mendenhall gives no representation of very severe patients. This failure to include those who have been severely affected, or psychiatrically detained (see Wessely’s involvement with the case of Ean Proctor) and medically abused through withholding of nutrition, means that the reader fails to grasp the depth of epistemic risk and harm. (Yet, very severe ME does not sit easily with her integrated dysregulation theory either.)

Even though Mendenhall has been meticulous in her interviews, reading and engagement, it is possibly the lack of experiential knowledge of severe ME and personal involvement with the online community causes a failure to grasp the lived reality of patients.

This is exemplified in that throughout the book she conflates PEM with fatigue and exhaustion, and even goes as far as to entangle it with emotions, social relationships and biological memories.

Fatigue is not something attributed to one thing. In clinical contexts fatigue is understood due to duration, severity and a constellation of their diagnoses. In life fatigue is imbued in complex social relationships, emotional pain, somatic symptoms, and biological memories. In this way not only fatigue but also post exertional malaise permeates chronic living through the rhythms of a life of exertion and recovery. (Mendenhall).

Interpretive Lens

The heart of the issues of Invisible Illness is not Mendenhall’s skill as an anthropologist; it is her inability to not apply her interpretive lens from her previous work. I have read some of her research, especially when she interprets narratives from Mexican-American patients as using diabetes to “speak women’s trauma”. She posits that diabetes is a biomedical disease and an “idiom of distress” and

…diabetes figures both as an expression and a product of social suffering in these narratives. (Speaking Diabetes, Mendenhall, 2010).

Yet, with the researchers’ interest in mind-body interaction, psychophysiology, and the focus in emotion and social suffering with blood sugar control, it is clear that Mendenhall has brought this entanglement framing to other chronic illnesses in Invisible Illness.

This is particularly apt in the story of Tam and her endometriosis. To be honest, we found this chapter harrowing, not only because of Tam’s depth of suffering with her illness but also the psychologisation that Mendenhall overlays into her narrative. Her pain (and other women’s) is linked to traumatic and stressful experiences of the past, to childhood violence and not feeling safe.

And it is very likely Tam’s health problems were deeply rooted in the life history that led her to this point. (Mendenhall).

It is not only Tam’s endometriosis that is given biopsychosocial causation through her dysregulation theory, it is also her Ulcerative Colitis, which Mendenhall mistakenly associates with IBS and not IBD.

Looking back Tam’s enteric nervous system dysregulation, clinically diagnosed as Ulcerative Colitis, a form of irritable bowel syndrome, or IBS could reflect the depth of stress and trauma she has carried over her life course. (Mendenhall).

Mendenhall can’t resist speculating. She places her anthropological model, rooted in biological entanglement theory and the polyvagal theory of safety and danger, over the narrative of women’s pain. (For more, see our article The Danger of Feeling Safe.) This represents a violation of narrative ethics, where the analyst’s interpretive framework supersedes the subject’s own causal understanding of their illness.

Holistic Overreach

It is this speculative misapplication of holism that damages Invisible IIlness. Ours isn’t a blanket anti-holism view, it is an anti-misuse-of-holism view: that is, when it is not backed by evidence and deflects from effective care.

Mendenhall repeatedly assumes without criticality or evidence that functional, alternative, and integrative medicine are valid avenues for chronic illness without navigating the significant issues patients have regarding cost, effectiveness, and gaslighting.

Unfortunately, this dabbling leads to a minimisation of Long Covid. This is demonstrated when Mendenhall postulates a rehabilitation centre for people with complex chronic illnesses:

I imagined quiet rooms for meditation, steam rooms, sound therapy, and massage. Strength training for small subtle movements and a warm pool for reimagining what it feels like to move freely again. (Mendenhall).

This fails to recognise that we do not need rehabilitation - we need specialist medical centres for the people most severely affected.

It is precisely this category error, lumping together a range of illnesses to be explained and treated the same way, that patients have been trying to avoid.

There is absolutely a case to discuss gaslit illnesses, especially those without a test, but the boundaries of what is and isn’t in the invisible illness category is very woolly. It is specificity, precision, biomarkers and removing them from somatoform framing that will make them visible - and that has to be done through biomedical research.

The ending of the book, which focuses on holistic lifestyle changes, reinforces this minimisation. A Long Covid patient goes on a two-week detox holiday to Mexico to recover and discovers that:

positive thinking and meditation were making her feel stronger. (Mendenhall).

It is critical framing - the lasting image the reader receives of Long Covid - and it strikes the wrong chord.

It is not just alternative medicine; Mendenhall unquestionably takes the position that FND is a valid diagnosis, but it is overused, as she does with somatoform and psychosomatic illness. She states that in FND:

[the] mind reveals how deeply entangled it is in the bodymind. (Mendenhall).

There is a failure to analyse the root of the problem - how many invisible illnesses, as MUS (medically unexplained symptoms) have been epistemically captured and embedded in the medical system as somatoform and functional, and within the domain of psychiatry.

Within the field of liaison psychiatry and psychosomatics, CFS, CFS/ME, IBS, FM, CI, CS, EI and a number of other conditions, for example, chronic Lyme disease, are bundled under the so-called “Functional Somatic Syndromes” (FSS) and “Medically Unexplained Syndromes” (MUS) umbrellas”. DSM-5 Working Group, DX Revision Watch.

It is important to realise that the problem is not just clinical diagnosis. The issue is the diagnostic imperialism of psychiatrists such as Michael Sharpe of the PACE trial, Jon Stone with FND, and Simon Wessely (See Canary article). Yet, Mendenhall’s silencing by Wessely means we do not have a full account of the epistemic injustice.

Kleinman and the BodyMind

The fundamental problem of Mendenhall’s allyship might lie in the example of her resonance with the anthropologists Arthur and Joan Kleinman’s work in the 1980s in Huhan, China: where she relates in the book their research into how people narrate bodily complaints to talk about stress and being silenced by the cultural revolution.

In many ways, this echoes Mendenhall’s own work with Mexican-American immigrants and diabetes, and Wessely’s work in emphasising social factors in ME. In narrating Kleinman’s claims that symptoms such as dizziness, exhaustion, pain and fatigue are the embodied effects of moral turmoil and cultural revolution tensions without critique, Mendenhall is caught in her own interpretive trap.

The link to ME/CFS is that Kleinman was the chairman of the SIBA foundation symposium on chronic fatigue because of his work in China. She reinforces his view that illness is usually mind and body - as demonstrated by her repeated use of bodymind - and shouldn’t be split. This illustrates that Invisible Illness is not hampered by Mendenhall’s intention and positive wish to help - it is her research lens that is her Achilles heel.

While discussing CFS as largely a psychological problem as opposed to a biological one, Kleinman argued: “One thing I notice as an anthropologist is a very deep mind body split in our discussion. It is as if one must have a real, that is physical reason for having physical complaints…There’s a physiology associated with many social conditions. We must be careful about thinking a condition must be mind or body, it usually is mind and body.” (Mendenhall).

Redemption?

It is important to note that Invisible Illness has an admirable aim: to challenge the ways medicine dismisses, marginalises, and gaslights people with chronic, poorly understood conditions. Mendenhall positions herself as an ally and has been open to critique and dialogue - which is inherently valuable.

So to conclude, Mendenhall falls into three main traps:

The first is the unfalsifiable threshold framing, widening the scope through biological, psychological, and social entanglements. The book would have been an excellent addition to Long Covid literature without this framing.

Instead, she created an asymmetry: the authority of the theorist over the patient. Her interpretive narratives of a marginalised group moved into epistemic overreach. Patients became illustrations of theory rather than subjects whose accounts do not need premature closure. This is where her allyship falters.

The second is a category error as Mendenhall grouped a fluid, poorly delineated and wide range of conditions under a single holistic umbrella. Proceeding to speculate that:

there might not be one pathway that can or should explain every case. The concept of thresholds enables us to sit within the grey areas of health and disease. (Mendenhall).

Patients will argue that it is precisely this grey area of medicine where we do not want to be located. In fact, it is the proclaimed favourite area of Sir Simon Wessely, which leads us to the third trap.

Mendenhall holds a position of false balance when narrating the PACE trial. Placing each side as equally valid is a false equivalence and is damaging for the ME community. Yet, we know now that this was because of the silencing technique of legal threat that Professor Simon Wessely used.

There is a way forward, though; we would encourage Mendenhall to see this as a reflexive moment, where the analyst becomes part of the study, and the power dynamics can be narrated. As Dr Diane O’Leary, who has also faced legal threats from Wessely, gently encourages in her response to Mendenhall’s Substack:

I’m guessing the world would be better off overall if you went ahead and published that silenced material. (Bluesky Blowup, Mendenhall).

Note: If one wishes to learn more about medical gaslighting, we would thoroughly recommend Dr Elinor Cleghorn’s Unwell Women and Dr Rageshri Dhairyawan’s Unheard: The Medical Practice of Silencing - you can listen to our interview with Dr Dhairyawan on our Pedantic Zebra Book Club, our chronic illness and disability reading collective. Join us on Fable!

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