Doctor’s Knowledge, Patient’s Knowledge

In the dominant collective imaginary, there is a sharp asymmetry between what a patient knows and what a doctor knows. The patient knows their own bodily experience. They know, in the terminology used to describe such situations, what their symptoms are. The doctor has all the rest of the knowledge: of the significance of these symptoms, and ultimately after tests only they know when to order and how to interpret, of the cause of the symptoms (usually referred to as “diagnosis”), the course the illness is likely to take (the “prognosis”) and the most appropriate treatment plan. We have, therefore, a highly asymmetrical situation where the patient and the doctor know strictly different things: just like the patient doesn’t have the knowledge required to accurately identify a cause, course, or treatment for their symptoms, the doctor doesn’t have independent knowledge of what the symptoms and, more broadly, lived experienced of the disease are.

This conception of the knowledge dynamics at play in the relationship between doctor and patient undergirds a number of our social practices. Firstly, and we will return to this in more detail later, it provides a rationale for the fact that the practice of medicine—the ordering of diagnostic tests, the prescription of treatments, and more—is impossible for those without a medical licence. The state enforces these restrictions on the premise that significant medical knowledge is required to practice medicine in a safe and therapeutic way. Secondly, this conception of knowledge division drives what Ellen Samuels calls biocertification: “the massive proliferation of state-issued documents purporting to authenticate a person’s biological membership in a regulated group” (2014: 9). If only doctors can determine the nature and significance of illness, only they can legitimise suffering as illness in the ever-expanding regime of mandatory sick notes and ever-shrinking disability benefit schemes. Finally, it can have significant repercussions for sick people’s self-conception with regards to potentially extremely important aspects of their lives, and for the relationships they have with those around them (“what does the doctor say?”). 

We see then that the question of whether this collectively endorsed view is correct is highly consequential. And it is also contested. Disabled and chronically ill people have been arguing for a long time that it is erroneous, and that the knowledge dynamics at play are, at the very least, much more complex than the dominant view suggests. Questions about the validity of the dominant view are also commonly raised by otherwise abled people seeking medical care for an acute heath issue, especially those subjected to racism, classism, and cisheterosexism, whose encounters with doctors sometimes lead to blatant and catastrophic errors. But nowhere is this contestation of the status quo stronger than among people with what I like to call controversialised illnesses, such as myalgic encephalomyelitis (ME). We commonly assert that many things doctors take themselves to know are false, that their reflexes systematically lead them astray, that they fail to recognise the significance of important facts, and that they are on the whole quite incapable of understanding and treating our pathologies. 

This kind of criticism is usually dismissed out of hand, even by people one would expect to find on our side. Thus Elizabeth Barnes (2023), a philosopher who presents herself as a feminist and disability theorist, wrote an entire academic paper on the issue. In it, she mentions a number of controversialised illnesses, among which ME, and settles on using the example of what she terms “so-called ‘chronic Lyme disease’”. Citing a CDC public-facing webpage, an op-ed written by a neurologist, and a thoroughly contested review article as her only sources of medical information throughout the paper, she explains that “patients aren’t trustworthy sources of information about the objective aspects of their health because they aren’t competent” such that “because of this lack of competence, doctors shouldn’t trust patients about claims of [this] type”. But interestingly, and this is typical of our opponents, Barnes never substantiates her assertions of our “incompetence”, nor does she even explicitly express her assumption that doctors by contrast are competent: that is presumably too obvious to require stating. (Instead, much of the paper’s argumentative substance consists of a thinly-veiled depiction of us as in the throes of mass hysteria: we come across as a group of irrational, ignorant, emotion-driven science-denialists propelled by social contagion.) But being serious about analysing the veracity of various attributions of knowledge and ignorance does require engagement with the substantive question of who knows what and how: in this case, of how medical knowledge is actually produced, acquired, and shared. 

***

Doctors do not acquire their knowledge ex nihilo: they are taught in medical school, they receive formal and informal training as junior doctors, and later continue to develop their knowledge through their growing clinical experience, engagement with colleagues, access to documentation such as guidelines and consensus statements, attendance of specialised conferences, perusal of the journals in their field, and conduction of their own research. The production and dissemination of this knowledge is mediated by a concert of institutions working in tandem: from medical schools, to medical journals, to research labs private and public, to medical associations and professional societies, to the instituons that employ the doctors themselves: hospitals, clinics, etc. In order to evaluate the reliability and accuracy of doctors’ beliefs, and the perspicuity of their patterns of thought and attention, it is this knowledge-formation process that needs to be examined. And as we shall see, it is highly defective in the case of controversialised illnesses. I will use ME as an example, though the points certainly apply to them all. 

Both the production and the transmission of medical knowledge are organised by specialty (indeed, increasingly by sub-specialty, or sub-sub-specialty): the education of medical students, the training of future specialists, as well as the continuing education of existing specialists. Professional societies, journals, and conferences are organised along specialty lines, and undergird a highly complex process of knowledge creation and exchange, where research findings are produced, analysed, discussed, replicated, tested, corrected, synthesised, disseminated, taught, and applied. This process permits a continuity between non-clinical biomedical research (which is usually done in public or private labs), research in clinical settings, and clinical practice. In that way, it hopefully ensures the research-responsiveness of patient care: thanks to this highly complex specialist infrastructure, the care that doctors provide ideally represents the culmination of a scientific process—the best possible care according to the present state of research. 

What happens when, as is the case with ME, an illness is not claimed by any specialty it would make sense to classify it under? Despite unequivocal evidence that the pathophysiology of ME centrally involves chronic pathogens, aberrant immune responses, metabolic dysfunction, and auto-immunity, and despite its clinical resemblance to several chronic, systemic, autoimmune diseases such as MS and Sjögren’s, neither infectious disease, nor clinical immunology, nor rheumatology claims ME as its own. None of these specialties teach ME in their sections of medical school or train their specialists to understand and treat the illness; they do not run conferences on the illness, or publish papers about it in their journals; they do not keep up with and propagate the research published by biomedical research labs. The institutions designed to transmit knowledge of illnesses to the doctors most suited to treat them simply do not perform this function with ME.

In the absence of specialist infrastructure, and short of becoming experts in the illness themselves, doctors expected to treat ME, usually then generalists, are left with official guidelines as their only formal source of information. Most countries in the global north have official guidelines that recommend, in broad terms, one or several courses of treatment action for each illness. These guidelines are usually the product of an extensive process of evidence gathering and synthesising by groups of experts. In that way, they constitute some form of assurance that medical practices are science-based. However, they are rarely detailed enough and responsive enough to developments in biomedical and clinical research to replace specialist knowledge; and as such, are not intended to be the sole source of formal information physicians have to treat a serious illness. But the doctors expected to treat ME—a serious, complex chronic illness that causes very high levels of disability and that can be fatal—are given a set of guidelines as their only guidance. Now some countries, such as France, do not even issue guidelines on ME: doctors there have no formal education or training, no knowledge-producing infrastructure, and no guidelines to inform the care they provide their patients. Other countries, like the Netherlands or Australia, have issued guidelines written not by a large team of experts aggregating all the available evidence, but by a small group of well-known ME denialists ignoring the biomedical research on ME and citing the same handful of fraudulent trials run by them and their friends. And even in countries like the UK where the guidelines are the result of a scientifically rigorous process of evidence-synthesis, doctors do not follow them. 

So if not from specialist infrastructure, and not from official guidelines, where do doctors’ ideas about what ME is and how to treat it come from? They come from informal training, informal conversations among themselves, and from the mainstream non-medical media. It is crucial to understand that, although informal, this kind of education is extremely powerful. Junior doctors are trained in practice to apprehend people with ME with suspicion, through the lens of psychosomatism at best, and malingering at worst. It is considered common knowledge that ME does not have an organic basis, and the mere questioning of that dogma is regarded as a violation of medical norms. And the topic is not only deeply engrained but also rampant in medical culture: it comes up again and again in informal conversations with and among doctors who dismiss us, vilify us, and humiliate us. This doesn’t just happen in locker rooms and on Reddit; physicians powerful enough to have received knighthoods can entertain audiences of hundreds of doctors with jokes at our expense:

Dr Wessely was speaking and he gave a throughly enjoyable lecture on ME. … He had the hundreds of staff physicians laughing themselves silly over the invented griefs of the ME … patients who according to Dr Wessely had no physical illness what so ever but a lot of misguided imagination.” (Dr Byron Hyde)

Of course things are barely better in the non-medical sources which, in the absence of serious medical education, undoubtedly play a role in shaping doctors’ ideas about ME: right-wing newspapers depict us as malingerers to fuel their ableist austerity rhetorics against benefit payments, ignorant journalists write op-eds about the psychosomatic in the hopes of boosting their careers with fashionable topics, and medical dramas tell tales of fake illness to amuse their viewers. 

The epistemic situation of doctors concerning ME is therefore dire. Their ideas about our illness are shaped, not by rigorous processes of knowledge production that are responsive to the findings of biomedical research (of which, due to the failure of specialist infrastructure, they remain ignorant), but by powerful but wholly unscientific mechanisms of idea propagation. Now, a small handful of doctors, who usually have personal ties to someone sick with ME and/or an unusual ability to resist social pressure and a keen sense of respect for their patients, have become ME specialists, outside of the formal specialism infrastructure. They hold workshops where they share their clinical experience; they publish their findings, conduct clinical trials, and collaborate with biomedical researchers. At a smaller scale, they build the missing infrastructure for a scientifically-informed, evidence-responsive kind of medical care. But one of the striking and more unique features of these doctors’ medical practice is their collaboration with patients. 

***

In the dominant imaginary, patients are medically “incompetent”, to reuse Barnes’s term: besides introspection, from which we know only our own experience (our phenomenology: the what-it’s-like of our illness), whatever beliefs we have about our illness independently of our doctors are the product of highly unreliable belief-formation mechanisms, dismissed as “old wives’s tales”, celebrity fads, and social media misinformation. (Barnes mentions “social media hashtags like ‘#LymeWarrior’” and the “celebrities, social media influencers, and reality TV stars who have spoken about their experiences” with chronic Lyme.) 

But the reality is that sick people, unable to rely on the medical establishment, have little choice but to dive into the biomedical aspects of our illness ourselves. Groups are set up at varying levels of formality that closely follow published scientific findings; some focus only on major findings, some focus on specific sub-areas of research, some publish weekly lists of every single new publication in the scientific literature on ME. Sick people with the relevant expertise prepare summaries and explanations, and interview researchers about their recent findings, to ensure everyone can have access to new information. Some sick people attend all major research conferences on ME and write detailed reports on every single presentation. Some sick people keep track of all clinical trials currently underway, report on news from these trials including enrolments, changes to timelines, and preliminary results. People enrolled in clinical trials, when they are allowed to, report their experiences informally and these are collated to get a sense of how likely the trials are to be successful. Etc. People with ME are engaged in a thorough collective process of knowledge acquisition and dissemination, which ensures most people with ME have an excellent idea of the overall landscape of ME research, both on pathophysiology and potential treatments.  

People with ME do not merely assimilate and circulate scientific knowledge; we also produce it. When studies are published, they are not only summarised but collectively analysed and criticised. Sick people publish these analyses and criticisms in scientific journals, sometimes in co-authored publications with non-sick researchers. More generally, sick people collaborate with non-sick scientists on new studies, review articles, opinion pieces, and conceptual-definitional groundwork. We are constantly in dialogue with researchers, informing their understanding of the disease, sharing our collective experience of the illness, of the nature of its triggers, the structure of its progression, etc. Many sick people have developed serious competence in the biomedical features of the illness, and have developed hypotheses about its pathophysiology. These are shared with researchers for further study; a journal of patient-generated research hypotheses was even founded, with the intention that professional researchers with the necessary health and lab resources test them.

But the production of knowledge is most developed when it comes to treatments. There are currently no approved treatments for ME, but a variety of drugs have been used off-label for decades to reduce illness severity and improve the quality of life of at least some sick people. In the absence of results from clinical trials caused by grievous underfunding (though it should be said that the enormous numbers of covid-induced ME cases has improved this slightly), sick people have no choice but to enquire into the efficacy of various treatment options themselves. This is sometimes done in rather formal ways; for instance, a pharmacist with ME created a massive, complex survey covering a large number of potential treatments, the results of which are currently being analysed in collaboration with a team of non-sick ME researchers. But more often, it is done in more informal ways. People share their experiences with various treatments, and when sufficiently many people do this, this gives the community an imperfect sense of the possible dangers of those treatments, their adverse effects, the best dosages and compounding methods for tolerability and efficacy, the kinds of improvements one can expect with the treatment and on which timeframe. Those of us who have access to the rare ME specialists report back to them, such that this immense labour of information production and collation informs their clinical practice; and similarly, non-sick researchers learn from us about our failures and successes, which provides important data for understanding the pathophysiology of the illness and for designing good clinical trials. 

So, in sharp contrast to the widespread conception of sick people as medically ignorant and unscientific, we as a group have knowledge of the aetiology, pathophysiology, and treatment options for our illness that is not only scientifically informed, as it might be if we had read a good book on the subject, but that is the product of a scientific process that we engage in alongside researchers and the few specialist physicians. To say that we have this knowledge as a group doesn’t mean that each sick person has this knowledge; just like, among the group of all specialists for a given disease, no individual has the group’s knowledge. Instead, epistemic labour is divided across people, such that some might contribute just the results of their own treatment attempt, some might concentrate more on refining conceptual tools to understand aspects of our illness, others might contribute pathophysiologic insights. What role people play in this collective process depends on their interests, their competences (many of us were trained and practised professionally as biologists, biochemists, pharmacists, doctors, etc before getting sick; and many of us have acquired these skills since getting sick), and how limited they are by the severity of their illness. But the process always remains a social endeavour, in that all these pieces become part of our collective knowledge through our joint analysis, emendation, amelioration, synthesis, etc of them.  

This knowledge-production process not only assimilates and engages with professional science, but it is continuous with it. Indeed, it bears striking resemblance in social epistemic terms to the ideal of medical knowledge production that specialist infrastructure is supposed to embody. So contrary to Barnes’s statement, we are not medically “incompetent”; as a group, we have an understanding of what she calls “the objective aspects of [our] health” that meets the strictest standards for medical knowledge, namely, that of being produced by a process that ensures responsiveness to all the available evidence. The overall situation is thus precisely the opposite of what the dominant view asserts: when it comes to ME, the knowledge of doctors isn’t the product of an epistemically commendable process, but the knowledge of sick people is. 

***

This has significant consequences in the consultation room, as doctor and patient meet. As already mentioned, the sometimes informal but epistemically sound research of sick people and their doctor comrades has shown that a number of treatments lead to meaningful improvements in quality of life for a subset of the sick population. These improvements can be life-changing: going from bedbound to merely housebound; becoming able again to go for short walks, to read a little bit, to have a conversation; regaining the capacity to work, etc. But doctors who have no adequate education on ME don’t know about these treatments and refuse to prescribe them. The reason they appeal to is that these have often not been tested in high-quality clinical trials. Of course, no one pushes harder for high-quality clinical trials than we do: state refusal to fund trials adequately is the subject of much of our campaigning, organising, and agitation. But in the absence of high-quality trials, off-label prescription of treatments is commonplace in the treatment of non-controversialised chronic illnesses, where specialists are aware of lower-quality kinds of evidence like retrospective studies, case studies, and the clinical experience of their peers. Their ignorance about our disease leads them to refuse us existing treatments that have a good safety profile and that are known to cause significant improvements in some of the people that try them. This refusal of medical care not only keeps people in states of avoidable suffering, but can contribute to a worsening of illness: it is medical neglect.

But inadequate understanding of our illnesses can also actively cause sometimes catastrophic and sometimes permanent harm. The cardinal feature of ME, that is, what distinguishes it from other illnesses, is that it progresses (i.e. people get sicker) with exertion. It is therefore an absolute imperative to refrain from whatever level of exertion induces this sometimes permanent worsening. For those with so called “very mild” illness, this might be going for a half-hour run, or having a very busy day at work. On the other end of the spectrum, for those with very severe disease, it might be saying a few words, or turning around in bed. Doctors who don’t have an accurate understanding of this crucial clinical feature of ME often encourage, and indeed sometimes force, their patients to exert beyond this hard limit. This is often done in two steps: they use cognitive behavioural therapy to teach patients to ignore their worsening symptoms, and graded exercise therapy to get them to increase their activity levels. This has caused disease progression in an untold number of people. Many have become bedbound as a result, some have died. Some people who attempted to refuse this harmful treatment have been forcibly institutionalised, sometimes for years, sometimes with absolutely catastrophic impacts on their health. 

We have a situation where the person in the consultation room who holds the power—power to cause physical harm (sometimes significant, sometimes permanent, and sometimes lethal), power to restrict freedom, power to neglect and abandon, and to, through notes in a chart, ensure further neglect and abandonment—does not have the adequate epistemic tools to adequately cognise the pathology at hand and to recognise the harm that they might cause. There is much to be said about whether medical care should be embedded in this kind of power relation at all, but it is clear that if anyone is to have such power, it is an absolute necessity that they be adequately informed: that they be able to identify clinically important features of a disease and that they be aware of the risks and benefits of various interventions, including non-pharmaceutical interventions and inaction.

***

Many might concede that the dominant view whereby the patient has phenomenological (“what it’s like”) knowledge and the doctor has medical knowledge does not hold when it comes to ME, but might still think that, this exception aside, it holds in general. The first thing to insist on is that there are many controversialised illnesses besides ME. Some common ones include chronic lyme, long covid, fibromyalgia, mast cell activation syndrome (MCAS), postural orthostatic tachycardia syndrome (POTS), irritable bowel syndrome (IBS), interstitial cystitis (IC), some forms of Ehlers-Danlos syndrome, especially the hypermobile type (hEDS), and craniocervical instability (CCI). For all of these illnesses, just like with ME, the knowledge of most physicians isn’t the result of an evidence-responsive process of knowledge formation, in sharp contrast to that of people sick with these diseases. 

There are also many diseases which are usually recognised as legitimate clinical entities but which are routinely minimised and dismissed as benign (or indeed as the patient’s fault) when they can cause levels of disability severe enough that people are unable to work, and unable to perform activities of daily living. Some examples include migraines, endometriosis, and Sjögren’s syndrome. Many mental illnesses like depression also fall in this category. Here again, there can be a gulf between the quality of the doctor’s medical knowledge and that of the patient. Often, in mechanisms similar to what we see in controversialised illnesses, people who suffer from these illnesses are forced to rely on each other for accurate knowledge of their condition, and networks of knowledge production and dissemination result. But even in illnesses that are considered both legitimate and serious by the medical establishment, gaps in knowledge also occur. These gaps are less sensational than in the case of ME because the epistemic processes that produce doctors’ knowledge about these illnesses are less compromised, but they do exist and can be substantial. It is not rare for people sick with legitimised illnesses to create communities where knowledge is acquired, produced, and shared where these gaps exist. Finally, this pattern isn’t restricted to diseases: it appears for instance in trans healthcare, where trans people produce and share knowledge of relevant medical interventions that is vastly superior to that of most doctors.

From this analysis, we cannot draw any definitive conclusions about the knowledge dynamics between any given patient and their doctor. Just like it is false to assert that the doctor necessarily possesses accurate medical knowledge that their patient lacks, it would obviously be false to assert the opposite. Who knows what and with what degree of reliability is an empirical question that cannot be answered without investigating the details of the case; it will depend on the disease at hand, on the specific doctor, on the specific patient, etc. But some things can definitely be said: that doctors’ ignorance is a dangerous thing, that it is far from uncommon for sick people to know more about their illnesses than the doctors they consult do, especially if these people have controversialised or minimised illnesses, that this reveals massive failures in infrastructures of medical knowledge production and medical care and calls for radical changes to these, and that, pending these changes, a good partnership between a sick person and their doctor is one that reflects and makes use of the reliable knowledge of both.