In ‘Chronic fatigue syndrome and an illness-focused approach to care: controversy, morality and paradox’, authors Michael Sharpe and Monica Greco begin by characterising myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) as illness-without-disease. On that basis they ask why patients reject treatments for illness-without-disease, and they answer with a philosophical idea. Whitehead’s ‘bifurcation of nature’, they suggest, still dominates public and professional thinking, and that conceptual confusion leads patients to reject the treatment they need. A great deal has occurred, however, since Whitehead characterised his culture’s confusions 100 years ago. In our time, I suggest, experience is no longer construed as an invalid second cousin of bodily states in philosophy, in medicine or in the culture at large. More importantly, we must evaluate medical explanations before we reach for philosophical alternatives. The National Institutes of Health and the Institute of Medicine have concluded that ME/CFS is, in fact, a biomedical disease, and all US governmental health organisations now agree. Although it would be productive for Sharpe and Greco to state and support their disagreement with the other side of the disease debate, it is no longer tenable, or safe, to ignore the possibility of disease in patients with ME/CFS, or to recommend that clinicians should do so. When we find ourselves in a framework that suggests the possibility of medical need is somehow beside the point for medical providers, it is time to reconsider our conceptual foundations.
- medical humanities
- medical ethics/bioethics
- philosophy of medicine/health care
- health policy
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In ‘Chronic fatigue syndrome and an illness-focused approach to care: controversy, morality and paradox’,1 authors Michael Sharpe and Monica Greco address this question: what renders illness-focused treatments unacceptable to patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)? Patients who suffer from illness-with-disease are generally accepting of the idea that illness-focused treatments like cognitive–behavioural therapy (CBT) and graded exercise therapy (GET) can help reduce symptoms. As patients who experience illness-without-disease, however, those with ME/CFS often reject these treatments.
To account for the difference, Sharpe and Greco explore the distinction between illness-with-disease and illness-without-disease philosophically and socially. They conclude that patients with ME/CFS reject CBT and GET because, based on a Whiteheadian ‘bifurcation of nature’, we generally assume that ‘the subjective reality of illness…derives…from the objective reality of disease’.2 As a result, illness-without-disease is construed as a sort of imposter that is undeserving of what authors describe as the ‘benefits of the sick role’.3 To resolve this problem they encourage providers to reject the distinction between subjective experience of illness and objective states of disease, and they offer strategies for helping patients do the same.
I begin by suggesting that while Sharpe and Greco are right to bring our attention to continued confusion about mind and body, we have come a long way since Whitehead’s time in philosophy, in medicine and in the culture at large—so much so that the ‘bifurcation of nature’ no longer holds. I then discuss four clinical explanations for patients’ resistance, all of them more pressing than Whiteheadian concerns. First, while Sharpe and Greco write as if CBT for illness-without-disease is the same as for illness-with-disease, they are actually different. Second, because there is substantial professional debate at this time about the effectiveness and potential harms of CBT and GET for ME/CFS, any discussion of patients’ resistance to these treatments must weigh in on that debate.
Third, it is possible the National Institutes of Health (NIH) and the Institute of Medicine (IOM) are right that these patients are suffering from a serious biological disease. Regardless of which side we prefer in that central debate, the existence of the debate means it is clinically problematic for Sharpe and Greco to ignore the possibility of disease, and to advise clinicians to do the same. Even if Sharpe and Greco were correct that Whitehead’s bifurcation of nature still holds in our time, no philosophical framework for medicine can make sense of ignoring the possibility of disease in patients who might, in fact, be suffering from disease. To the extent that providers do move ‘beyond a preoccupation with the presence or absence of disease’, it is reasonable for patients to reject treatment for illness-without-disease.
The current state of controversy
From the first modern concern with ME/CFS in the mid-1980s,4 and the first research that construed it as psychosomatic5—that is, as ‘illness-without-disease’6—patients have insisted that their illness experience is in fact caused by disease. Their approach to that position has been uniquely public. Through unprecedented forms of public advocacy, patients with ME/CFS have insisted that treatments for illness-without-disease fail to relieve their symptoms and disabilities, presenting the profession with a sustained plea for biomedical care and research.
As a general rule, patients’ negative responses to diagnosis and treatment serve as an important filter for error in medical practice. When patients are construed to be suffering from a psychosomatic condition, however, negative responses can no longer play that error-corrective role. Once psychosomatic diagnosis is in place, that is to say, patients’ insistence on biomedical care is framed as a marker that supports an absence of biomedical need.7 While it might be possible to defend mistrust of patients’ reports as a clinical strategy that serves the best interests of patients with ME/CFS, it is surprising that professionals in medical humanities have not been more concerned with ethical challenges that arise with mistrust on this scale.8
Prior to 2015, the battle over ME/CFS was waged between patients and professionals, where patients insisted that disease is present while professionals insisted it is not. In 2015, however, battle lines radically shifted when the issue was examined by the US NIH9 and the National Institute of Medicine (now the National Academy of Medicine).10 Both concluded that ME/CFS is a ‘serious, chronic, complex and systemic disease’.11 The issue was then examined by the Agency for Healthcare Research and Quality (AHRQ), which supported that conclusion with a detailed examination of research on both sides.12 In 2017, the Centers for Disease Control (CDC) abandoned their recommendations for illness-focused management, and the NIH launched their current programme of disease-based research.
At this time, governmental health organisations of the USA, Sweden and Denmark have rejected the illness-without-disease approach. Although the UK is the conceptual home of the illness-without-disease model, in 2017 the National Institute for Health and Care Excellence (NICE) responded to the breakdown of professional consensus by intimating a revision of the UK practice guideline for the condition. Finally, very recently, the WHO specifically stipulated that patients with ME/CFS should not be diagnosed with ‘bodily distress disorder’, the new construct for psychosomatic disorders in the upcoming edition of the International Classification of Diseases (ICD).13
This, then, is how the ME/CFS controversy currently stands—not as a dispute between patients and professionals, but as a dispute between professionals. A great many providers, researchers and public health organisations now accept that ME/CFS is a serious biological disease, and so patients’ reports about the failure of treatments for illness-without-disease should be trusted.14 At the same time, many continue to accept (as Sharpe and Greco do) that ME/CFS is illness-without-disease, so patients’ pleas for biomedical care and research have been an expression of conceptual confusion and self-misunderstanding. Regardless of which side of the debate we prefer, the question of disease in ME/CFS is both clinically and ethically serious.
The bifurcation of nature
Sharpe’s and Greco’s central point is that ME/CFS patients’ resistance to treatments for illness-without-disease arises from cultural confusion about the relation between illness-with-disease and illness-without-disease. Based on what Whitehead described as the ‘bifurcation of nature’, they suggest that patients with ME/CFS fall uncomfortably into the cracks of our conceptual understanding. Philosophers, scientists, the medical profession and the culture at large embrace a misguided division between the objective physical realm, which is construed as real and legitimate, and the realm of subjective experience, which is construed as invalid or derivative. Based on this schism, the suggestion of illness experience in the absence of disease strikes patients as insulting or delegitimising. To resolve this problem, practitioners should abandon a sharp distinction between objective states of disease and subjective states of illness experience, and they should follow Sharpe’s and Greco’s guidance for encouraging patients to do the same.
Sharpe and Greco are certainly right to point out that our culture struggles to make sense of mind and body in the context of medicine. Their understanding of that struggle, however, arises from the idea that the ‘bifurcation of nature’ has ‘held its own as the guiding principle of scientific studies’15 in our time.16 Although that suggestion might be accurate, it is a historical stretch that demands a substantial defence. A great deal has changed in medicine and in the culture in the 100 years since Whitehead wrote, particularly when it comes to the unity of mind and body.
Sharpe’s and Greco’s discussion essentially articulates Engel’s original challenge to scientific materialism in the biomedical model.17 Engel’s foundations for medical holism were put in place 50 years ago, however, and it seems unreasonable to propose that they have effected no change. It is now common knowledge, for example, that medical practice should be ‘integrated mind-body practice’, so much so that these kinds of statements are necessary for medical marketing. As patients we typically do recognise that experience of our bodies is integrally related to experience of ourselves as persons, and we do expect our doctors to understand that at least as well as we do. Although there is still work to do in this area, the model of medicine as pure biological science has, in fact, been rejected in our time.
Second, Sharpe’s and Greco’s suggestions about how to resolve the bifurcation of nature in practice depend on the assumption that (1) it is philosophically problematic to sharply distinguish subjective states of experience from objective states of the body or brain. As is common in research in psychosomatic medicine, and sometimes in medical humanities, they implicitly support that idea with two deeper assumptions: (2) a sharp distinction between subjective states of experience and objective states of the body implies dualism; and (3) dualism is a philosophically untenable position. Based on these assumptions, the authors conclude that it is unwise for providers to draw a clear and cautious diagnostic line between objective states of disease and subjective states of illness experience.
Unfortunately, this picture of philosophy is outdated. If Sharpe and Greco had considered the ‘bifurcation of nature’ in the context of current research, they would have found that Whitehead’s concerns have been vigorously addressed in the philosophical and neuroscientific discourse that characterises our time. It is now routine for philosophers (1) to accept a sharp distinction between subjective states of experience and objective states of the body or brain, and (2) they do not construe this distinction as implying dualism, that is, the view that minds or mental properties exist.18 There are competing accounts of how best to explain the distinction in a scientific framework, and philosophy of mind since the late 20th century has been chiefly concerned with evaluating these.19
In addition, some philosophers have explained the distinction between states of experience and states of the body or brain with a form of dualism called ‘property dualism’, so (3) dualism is no longer understood to be untenable.20 This approach does not ‘bifurcate nature’. On the contrary, property dualism is grounded in the idea that we should expect a fully scientific account of the difference between experiential states and brain states, and the connection that binds them.21 It is on this basis that cognitive scientists now search for the neural correlates of consciousness,22 and it is on this basis that we now have societies for the scientific study of consciousness that are bursting with productive research.23 This research is strong evidence that, perhaps thanks to Whitehead, the bifurcation of nature has in fact dissolved as a guiding assumption in current philosophical and scientific discourse.
The idea that we must reject separation of mind and body is not unique to Sharpe and Greco. It is an idea that runs deep in psychosomatic medicine, and in medical humanities until the last 10 years.24 It is actually inaccurate, though, to suggest that philosophers in our time generally accept this idea. Moreover, it is an error to equate separation of mind and body in our thinking with dualism, the view that minds or mental properties exist. A great many philosophers now accept a crisp distinction between states of experience and states of the body while rejecting dualism. Even if it were still problematic to be a dualist in our time—and it is not—we can certainly draw a clear diagnostic line between objective states of disease and subjective states of illness experience without implying that we are dualists.
Four alternative explanations
If philosophical considerations do not explain ME/CFS patients’ resistance to treatments for illness-without-disease, what does explain it? From a clinical perspective there are four, more pressing alternatives.
1. While Sharpe and Greco proceed as if CBT for patients with disease is the same as for patients without disease, that is not the case. CBT for patients with disease diagnosis will encourage them to adjust their psychological responses to symptoms, but will not encourage self-responsibility for the development of those symptoms. When patients are believed to suffer from illness-without-disease, however, the benefits of CBT are understood to arise from ‘its focus on facilitating…self-responsibility of the patient’.25 Even if symptoms of ME/CFS can actually be relieved with this kind of self-responsibility, it is reasonable to expect that patients will find the suggestion of responsibility for bodily symptoms uniquely challenging.
2. It is possible that illness-focused treatments do not actually improve symptoms of ME/CFS, and it is possible that they make symptoms worse. The ‘Forward-ME’ group of support and research charities recently commissioned a survey to assist with revisions of the NICE guideline for ME/CFS.26 Of the 2274 patients who responded, ‘53% reported no change in physical health after CBT treatment’.27 In addition, the survey found that ‘67.1%…reported deterioration in physical health after graded exercise therapy’.28 Although there are scientific shortcomings to the survey, the number of patients surveyed and the unified nature of their responses are relevant to any research that considers the question of patient resistance.
The AHRQ examined research on potential harm with GET, and they concluded that ‘GET was associated with a higher number of reported harms in several trials, higher withdrawal rates in one trial, and refusal for repeat exercise testing in another’.29 More importantly, it was concern about the harm caused by exertion that led the IOM to rename the condition as ‘systemic exertion intolerance disease’.30 According to the IOM, it is not intractable fatigue that defines ME/CFS, but a form of exertion intolerance that would make GET straightforwardly threatening. For this reason, the CDC has now removed GET from its provider recommendations.
This evidence does not definitively resolve the question of whether CBT and GET are helpful or harmful treatments. It is important to note, however, that to the extent that we reject it, we support mistrust of patients’ reports at a very substantial scale. It might be possible to defend this level of mistrust, but further ethical research is needed on that issue.31 In any case, because evidence does clearly suggest now that it is possible patients’ reports about the ineffectiveness of CBT and GET are accurate, research that considers patients’ resistance to these treatments must now weigh in on that evidence.
3. The simplest and most obvious explanation for patients’ resistance to treatments for illness-without-disease would be the presence of disease. It would be perfectly reasonable for Sharpe and Greco to engage with the disease-focused approach in a way that argues for management of ME/CFS as illness-without-disease. A discussion of this kind, for example, could respond to the detailed 2016 Addendum by the AHRQ,32 which evaluates research on both sides in a way that carefully defends a disease-based approach. Indeed, a response of this kind would be an invaluable contribution to the debate. Sharpe and Greco see no need to evaluate the question of disease as the AHRQ does, however—or even to mention it—and that omission is problematic on both a clinical level and an ethical level.
The decision to ignore the disease debate is surely meant as an example of authors’ directive to move ‘beyond a preoccupation with the presence or absence of disease’.33 That directive is inadequately supported, however, with an outdated picture of philosophy’s demands for the practice of medicine. Moreover, authors’ failure to acknowledge the risk involved with this directive would be clinically problematic even if they did provide strong philosophical support. It is always possible for researchers to propose an approach to patient care that takes risks in hopes of greater benefit. It is unwise for providers to embrace guidance of this kind, however, if researchers fail to address, or even to acknowledge, risk. No matter how emphatically we believe in a psychosocial approach to ME/CFS, it will remain possible that the NIH, IOM and CDC are correct in concluding that these patients suffer from a disease that requires biomedical care and research to develop it.
In the medical humanities the question at hand is not which side we prefer in the scientific debate, but rather, given the current state of diagnostic uncertainty, what would ethical management of ME/CFS look like.34 When we take this neutral question out of the context of psychosomatic medicine, it is much easier to see how ethics should constrain practice. Suppose health authorities in the USA, Denmark and Sweden reached consensus on the existence of a new and poorly understood form of cancer afflicting tens of millions across the globe, with criteria for diagnosis and recommendations for management while research is under way. Suppose, moreover, that patients who meet the new disease criteria have repeatedly appealed to the global medical community for biomedical care and research.
In this scenario, what would we expect of research about this group by professionals in settings where the possibility of disease is under evaluation in national health policy (as ME/CFS now is in the UK)? What would we conclude within the medical humanities if authors flatly assumed that patients are without disease, advising physicians across the globe to move ‘beyond a preoccupation with the presence or absence of disease?’35 In this fictitious scenario, a refusal to address biomedical risk would be an alarming breach of usual standards for caution. While researchers could productively argue against biomedical management while professional debate unfolds, it is hard to imagine any way for them to succeed in doing so without acknowledging, and carefully evaluating, the risks involved.
When researchers enquired in, say, 2012, about ME/CFS patients’ views on CBT and GET, they did so within a framework of professional consensus on the absence of disease. Now that this framework has dissolved—now that the new ICD will specify that ME/CFS should not be diagnosed as a psychosomatic condition—ethical management of ME/CFS must minimally accept the reality of diagnostic uncertainty in a way that cautiously addresses biomedical risk.
4. Finally, based on Sharpe’s and Greco’s example, it is possible that patients’ resistance to treatment for illness-without-disease arises because their providers reject the possibility of disease based on conceptual positioning rather than established standards for clinical caution. Even if Sharpe and Greco were correct that patients with ME/CFS suffer from illness-without-disease, that is to say, it would still be natural for patients to reject that conclusion if their providers failed to support it in a way that reflects usual standards for medical caution and diagnostic rigour.36
If the WHO and the health departments of the USA, Sweden and Denmark are correct that ME/CFS is not, in fact, a psychosomatic condition, then it has been an error to manage it as illness-without-disease since the 1990s. In that case it would be vitally important to determine how error of this kind could prevail for so long. To do that we would need to answer this question: on what basis have medical and mental health providers accepted that ME/CFS is illness-without-disease? To the extent that Sharpe’s and Greco’s article represents the long-standing perspective of psychosomatic medicine, it presents us with the worrisome possibility that disease in patients with ME/CFS has been rejected on the basis of conceptual positioning, without adequate regard for medical risk. If the imagined philosophical threat of distinguishing disease from experience is the only basis on which these patients have been denied biomedical support and research, then patients’ rejection of treatments for illness-without-disease would be wise—and the profession’s determination to ignore it would be an important cautionary tale.
The battle between ME/CFS patients and medical professionals has now become a battle between professionals, so we find ourselves at a juncture where the question of disease is pressing. Authors Sharpe and Greco ignore that question, suggesting that the possibility of serious, untreated disease in a large patient population should not concern us as professionals in medical humanities. It is this that makes the paper such an important example. No matter which view about disease in ME/CFS is correct, the question of disease is clinically and ethically pressing in every setting where it arises. While it is certainly important for medical practitioners to be aware that experience of illness can arise in the absence of peripheral bodily disease, that reality in no way weakens the imperative to beneficently determine whether disease is or is not present. When we find ourselves in a framework that suggests the possibility of unmet medical need is unimportant, it is time to reconsider our foundations.
The rift that has developed between patients and professionals over ME/CFS has been profoundly unproductive, and similar conflicts have now developed with respect to fibromyalgia,37 irritable bowel syndrome,38 chronic Lyme disease,39 mitochondrial disorders40 and Ehlers-Danlos syndrome.41 It is not possible for patients to heal this rift. To accomplish that, professionals in psychosomatic medicine should state for the record that it is no longer safe to assume that patients with ME/CFS suffer from illness-without-disease. This minimal acknowledgement of risk among all providers would make it possible for patients and providers to peaceably collaborate in this challenging area of medicine.
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41. Natalie Akoorie (2018), “Advocate Calls for Hub and Guidelines for Ehlers-Danlos Patients,” New Zealand Herald, December 14, 2018, retrieved from https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12144552.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient consent for publication Not required.
Provenance and peer review Not commissioned; externally peer reviewed.
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