Capital and the Controversialisation of Illness

Myalgic encephalomyelitis (ME) is often called a contested disease. Although the suffering of people with ME is usually not called into question, at least not explicitly, questions are raised about whether this suffering is best apprehended through a medical lens. Medical professionals in particular often contest claims to the effect that the illness requires biomedical treatment. They regularly assert that no scientific evidence exists to support the claim that it has an organic basis, such that the symptoms are “medically unexplained”. Together with a handful of other illness, it is therefore termed a “disease of unknown aetiology” or “persistent somatic symptoms”. This suggests that their contestation of our disease is of a purely scientific, apolitical kind: it is simply what the evidence indicates.

But for more than forty years, study after study has documented immunological, metabolic, neurological, and vascular aberrations in ME, such that the evidence for an organic basis to the illness is unequivocal [1]. And even though a cure does not currently exist, several biomedical interventions yield significant improvements in a significant portion of sick people [2]. So, the idea that ME is “medically unexplained” or that it has an “unknown aetiology” simply does not reflect the facts. And the thought that what drives these pronouncements is mere responsiveness to evidence cannot be accurate. 

Now, it’s true that most healthcare professionals have never heard of these pathophysiological and treatment studies. I explained in a previous blog post that the knowledge production mechanisms that usually serve to ensure that medical practice is responsive to evidence simply do not function with ME. But if the contestation of ME as an organic disease was a matter of mere ignorance—of simply not having the relevant evidence—presenting healthcare professionals with these findings would cause them to reevaluate. This is not what we see. Instead, the findings are dismissed without investigation as insufficient evidence: the studies are too small, not replicated; the abnormalities do not fully explain the symptomatology; none of the abnormalities are specific enough to constitute a biomarker; none of the treatments have been shown to be effective in high-quality RCTs.

This line of response cannot possibly be given in good faith, for if it was, much of the scientific grounding for much of the practice of medicine would be swept along with it. It is very rare for the symptomatology of an illness to be directly correlated with pathophysiological findings. In most legitimised illnesses, the linkage of clinical presentation and pathophysiological findings occurs post hoc. Many illnesses don’t have a biomarker—a biological or imaging test or set thereof that distinguishes the illness from healthy controls and other illnesses: many are diagnosed on the basis of clinical presentation, sometimes together with some suggestive but not conclusive biological findings. And plenty of treatments are widely considered effective despite the absence of large-scale, high-quality studies—if studies exist for similar diseases, if mechanistic knowledge entails the treatment will be effective, if the treatment is widely used off-label with success. To dismiss the findings on ME outright on the basis of these arguments, without concurrently repudiating much of medicine, is to employ a double standard. 

But more importantly, if medical professionals unsatisfied with the reliability of the findings were arguing in good faith, they would be campaigning alongside us for more research: more numerous, bigger, more precise studies on the immunological, metabolic, neurological, and vascular aspects of the illness; more funding to test, verify, and make widely accessible the several candidates that small studies have proposed as potential biomarkers; and properly designed randomised controlled trials for the biomedical interventions currently in use off-label. If ME was claimed to be “medically unexplained” and to have an “unknown aetiology” on the basis of a putative lack of evidence, whatever findings do explain ME symptoms and provide answers as to its aetiology would be met with excitement and enthusiasm to further test, replicate, and verify them.

Instead, these findings are dismissed and further research into them is grievously underfunded. For instance, the graph below shows NIH funding per person affected and number of people affected for several illnesses [3]. We can see that although ME is a very common illness, the amount of funding awarded to ME research is minuscule. 

This is not restricted to the United States. In the UK, the spending per patient is estimated to be between £2-3 per patient per year, depending on estimates of the number of people affected [4]. In France, there is no funding at all for research into ME. 

And not only is this funding shockingly insufficient, but it is on the whole not used to fund biomedical research into the pathophysiology of ME, or into the development and/or trialling of treatments. Sometimes, it is awarded to projects that have nothing to do with ME: in 2022, a quarter of the NIH’s funding for ME went to a project on cancer-related fatigue [5]. But very often, it is awarded to projects intended to show that ME is not an organic illness. 

State funding agencies around the world have funded dozens of such studies, but none is as infamous as the PACE trial. The PACE trial cost £5 millions of UK public money, some of which came from the Departement of Works and Pensions, the UK’s government body responsible for paying out disability benefits. As far as anyone can tell, this is the only clinical trial the DWP has ever funded. It was led by prominent ME psychologisers, who have worked their entire careers to spread the view that ME isn’t an organic illness but the result of “false illness beliefs” that people have in order to reap the supposed benefits of the “sick role”. The PACE trial was designed to confirm their theory: participants would be trained, using Cognitive Behavioural Therapy (CBT), to stop believing that they were sick, and would be pushed to gradually increase their activity levels using a technique called Graded Exercise Therapy (GET). Results were published in the Lancet: CBT and GET were claimed to be effective for the treatment of ME [6].

People sick with and/or knowledgeable about ME immediately concluded that something had gone wrong in the study design, since the cardinal feature of ME is that it gets worse with exertion. We experience this cruel aspect of the disease—known as post-exertional malaise or PEM—on a regular basis; and we have had to reorganise our entire lives to avoid triggering it, lest we lose even more function, and suffer even more intensely. Many people have become sicker, sometimes to the point of becoming bedbound, sometimes to the point of death, by pushing through their symptoms, usually at the recommendation or even injunction of their doctor. We therefore know all too intimately that a study purporting exercise helps with ME could not be right. 

Sick people, in collaboration with serious ME researchers, filed numerous Freedom of Information (FOI) requests to obtain the PACE study data, which authors of the study paid £245000 of public money in legal fees to avoid having to disclose. Today, thirteen years later, we still don’t have all the data. But we do have enough to know that PACE methodology was a case of research malpractice, arguably even fraud. Among other issues, outcome measures were changed midway through the trial, such that people could become sicker from the trial interventions, yet count as “recovered”. The authors failed to report some of their objective outcome measures that yielded null results. They primarily relied on subjective outcome measures, which were designed such that they couldn’t capture PEM. (More information on the PACE trial can be found in this three-part essay by journalist David Tuller: [7,8,9].) Several sick and non-sick researchers published a reanalysis of the data obtained through FOI requests, in which they show that CBT and GET are not effective for the treatment of ME [10]. Despite all this, the PACE trial results still have not been retracted from The Lancet, and they continue to exert enormous influence within medical institutions, such that countless people with ME continue to be harmed by forced exercise programmes prescribed by their doctors.  

It wasn’t always like this. When 292 people became sick during an outbreak at the Royal Free Hospital in 1955, research showed a number of abnormalities in the patients’ nervous systems and muscles. As a result, the infectious diseases specialist who oversaw their care, Dr Melvin Ramsey, called the illness “myalgic encephalomyelitis” (inflammation of the brain and spinal cord accompanied by muscle pain) and devoted his career to understanding and treating it. Several other outbreaks occurred in the 20th century, and the illness became recognised as an infection-induced immune-mediated disease with neurological, metabolic, and vascular complications. It was classified as a neurological disease by the WHO in 1969; and although the illness was poorly understood (as many other serious common illnesses are), its status as an organic disease was not contested at all. 

That began to change in the 1980s. When the CDC was called to investigate a series of outbreaks in the United States, they renamed myalgic encephalomyelitis “chronic fatigue syndrome”, and created diagnostic criteria that didn’t require the presence of its cardinal, most debilitating, and most dangerous feature: PEM. In the decades that followed, states and insurance companies started to fund more and more research like the PACE trial, intended to establish an absence of organic disease, and to spread the idea that people sick with ME were neurotically attempting to avoid work. Narratives about the illness were created and cemented in the questionnaires used to assess the severity of illness that dissimulated its most serious clinical characteristics, and that psychologised its overall presentation. People sick with ME and ME researchers became ridiculed and vilified, and decades later, psychosomatic narratives still dominate the medical landscape when it comes to ME. Many of us have died, many of us have spent years or decades terribly sick, with no treatment and no medical care.

A cursory look at the history of ME reveals that state actors and insurance companies went to great lengths to undermine the former consensus that ME is a serious organic illness. This continues to this day, with catastrophic underfunding of biomedical research into the disease’s pathophysiology and into biomedical treatments, and with lavish funding of psychologising research. As a result, the numerous immune, metabolic, neurological, and vascular findings on ME are not widely discussed, replicated, and pursued, but are crowded out by at best incompetent and at worst fraudulent research intended to undermine the illness’s organic nature. This in turn obfuscates the clinical features of ME, especially of PEM, such that healthcare professionals not only fail to treat their patients with ME, but in fact often make them sicker, sometimes to the point of causing their deaths. ME is not so much “medically unexplained” as it is rendered medically unintelligible; it is not “contested” so much as it is controversialised. 

***

This controversialisation calls for an explanation. Why would state institutions and insurance companies go to such lengths to establish a view of people with ME as in the throes of “false sickness beliefs” and in need of psychological and physical rehabilitation?

The first thing to note is that ME is a common disease. Before the covid pandemic, it was estimated to affect 1 in 200 people [11]. Now, it’s much, much more common. Research suggests that 9% of covid infections cause an illness characterised by fatigue, cognitive dysfunction, and most importantly, PEM—in other words, ME [12].This means that hundreds of millions of people worldwide probably suffer from ME. It’s also a disabling disease. About 75% of people diagnosed with ME cannot work, and 25% are homebound or bedbound [13]. (Altough, note that people who have ME but who haven’t been formally diagnosed are probably less severely affected, so these numbers are somewhat skewed.) Some (including myself) require round the clock help with all activities of daily living—feeding, cleaning, etc. Some people need ongoing medical care, such as tube feeding, or even IV feeding (known as TPN), and ongoing palliative care to manage their symptoms. Finally, biomedical research is extremely costly. Not only that, but as an immune-mediated disease, and with the limited evidence we have, there are reasons to believe that effective treatments for ME will include biologics, which are very expensive drugs [14].

To recognise ME as the serious organic disease that it is would come with pressures to redress the current state of affairs. Currently, people with ME are making themselves sicker to be able to afford housing, food, specialised equipment, health insurance, off-label meds not reimbursed by said insurance, and expensive appointments with specialists who are often forced to operate outside public and/or insurance-covered frameworks. People who are too sick to keep working are forced to rely on mutual aid and/or often abusive relatives, often become homeless, and sometimes die. Most people do not have even one competent doctor who oversees their care, even though they might be sick enough to be literally unable to walk a few steps. Severely affected people can often not access any healthcare, since doctors refuse to conduct home visits and we are too sick to leave our houses, even our beds. 

To adequately meet the needs of the numerous people with ME would require: benefit payments so people can afford housing and food, further support payments so people can afford specialised equipment and pay for the carers they need to ensure at the very least adequate nutrition and hygiene, and reimbursement of all meds. It would require actual access to medical care, which would involve the mass education of doctors on ME, the creation of a new ME sub-speciality and teams of care to address the illness’s comorbidities, the deployment of healthcare at home for those housebound and bedbound (including ME healthcare but also nursing care, dental care, and other types of healthcare currently only available in clinics and hospitals but that could potentially, with sufficient means, take place remotely or at the patient’s house). Finally it would require a massive investment into biomedical research on ME, including the funding of clinical trials for all drugs currently proposed as possible treatments, and the development of new drugs. 

Given the sheer number of people sick with ME, the costs associated with recognising that it is a serious organic illness would be astronomical. So it’s not a surprise that ME controversialisation began in the 80s—era of economic crises, austerity, and the dismantling of the welfare state. As Reagan and Thatcher were spearheading efforts to slash public spending, and deploying ideologies that depicted those unable to work as lazy malingerers, ME was renamed “chronic fatigue syndrome” by the state and the “yuppie flu” by its supportive right-wing press. 

It is clear that states have an interest in ME denialism and the disability benefits case is an obvious one. To redress the abandonment of people with ME would cost disability benefit schemes enormous sums of money. At the moment, it is near impossible to get approved for disability benefits when one has ME. In Australia for instance, a recent freedom of information request revealed that only 90 people in the entire country are receiving disability support for ME; when the number of people who cannot work because of ME is estimated to be in the hundreds of thousands. It is not surprising therefore that insurance companies and state institutions would fund the controversialisation of ME. It is much cheaper for the UK’s Department of Work and Pensions to participate in the funding of the PACE trial than it is to financially support the people disabled by ME.

***

It is widely recognised among people with ME that the state’s controversialisation of our illness serves to justify our neglect and abandonment. But I contend that it also plays a more fundamental role in supporting and stabilising the current political economy of health.

If there exists an illnesss that is fake, that is, if there are people who seem sick and say they are sick but who are not actually sick, who shouldn’t be given medical care and the support that comes with sickness, this opens the door for asking, whenever someone appears sick or claims to be sick, whether they really are sick or only fake-sick like us. In order words, the controversialisation of our illness serves to make ever-present the possibility that any disabled person might be faking and malingering. In the words of Vox Jo Hsu, the controversialisation of ME “helped construct the overblown threat of disability fraud, which normalized assumptions that some disability claims are dishonest—and therefore any could be questioned” [15]. This in turn justifies the need for biocertification processes—for state-issued or state-regulated proof that people seeking healthcare and disability benefits really are sick—even if these processes are invasive, dehumanising, and further disabling. And as we know these processes lie at the heart of the state abandonment of disabled people in general—by making it increasingly hard for anyone to access life-saving (even if grievously low) benefits, more and more people live in greater and greater poverty, are increasingly unable to preserve what health they have, and increasingly often die. The controversialisation of ME serves to justify not only our neglect and abandonment, but the anchoring of the political economy of health on principles of austerity, in other words, the neglect and abandonment of disabled people in general. 

And if the present political economy of health is predicated on the existence of controversialised illnesses, if it needs controversialised illnesses for its justification and stability, what better candidate than an illness like ME? It is common enough that malingering can be understood as a real threat; it overwhelmingly affects women; and poor people, racialised people, queer people, and neurodivergent people are disproportionately affected. 

Moreover, ME is unique in that it progresses (i.e. gets worse) with overexertion, not just temporarily but for elongated, sometimes permanent periods; and as such, requires extreme levels of inactivity. Thus to recognise ME as a legitimate clinical entity is to open the door to the idea that inactivity isn’t just not-bad (an idea we find from Marx to contemporary queer theory, that insists on the sensual, pleasureful dimension of human life) but for many, actually necessary. It is to undermine pre-existing ideological formations like “laziness” used to stigmatise lack of productivity, force people into work, and blame disabled people for their disabilities. It is to insist that overwork isn’t to be addressed by offering endless mindfulness and exercise workshops (which are eerily similar to the PACE trial’s CBT and GET) but by actually reducing working hours. And it is to pave the way for a full recognition of the harms work causes, besides ME, to working class and other exploited people, from disablement to early death—something Engels theorised as social murder. If there is an illness that is directly made worse by exertion, it is not in the interest of capital to raise consciousness about it.

Finally, ME is often called an “infection-associated chronic illnesss”, alongside a handful of other, also controversialised illnesses such as chronic Lyme disease. Indeed, the vast majority of ME cases begin with a viral infection; although there are many viral triggers, Epstein-Barr virus, the virus which causes mononucleosis in the acute phase, and Covid are the most common causes of ME: both cause ME in approximately 10% of infections. To recognise that these viruses cause a serious, debilitating, so-far incurable disease in such a large proportion of infections stands in serious tension with pro-spread policies. But preventing covid spread is extremely costly to the status quo in the short term. It requires, among other things, universal paid sick leave, places to quarantine for everyone, massive free testing infrastructure, installation of air filtration units in all indoor public spaces, and the widespread distribution of free respirators—masks that are effective against the spread of airborne diseases such as Covid, with regulatory standards like FFP2, N95, P100, etc. (For an exceptional read on Covid and capital, see “Let Them Eat Plague!” by Comrade Dremel. For a fantastic resource on masks effective against Covid, see the masks4all wiki.) This, as the last few years has shown us, is not only very costly to implement but also creates work absences and decreased consumption, and therefore revenue losses that capitalists would rather not incur. Again, to recognise ME for the serious illness that it is is not in the short-term interest of capital. (Alarming and ever-increasing rates of work absences due to long-term sickness since 2020 do however indicate that ME denialism isn’t particularly viable a long-term strategy.)

***

The controversialisation of ME, initiated and perpetuated by state institutions and insurance companies, has led to widespread ME denialism beyond benefit-granting and healthcare-providing settings. This denialism has become engrained as a cornerstone of ableist capitalist ideology, such that even people who haven’t heard of ME specifically perform disbelieving and minimising gestures when confronted with chronic illnesses, especially those not legitimised by the state. Ableists use the controversialisation of our illness to blame us for our disability, in more or less covert ways, and to mistreat us in terrifying, sometimes lethal ways. People disabled by legitimised illnesses signal to the world that they are actually sick, “not like us”, in an effort to convince an ableist society that they deserve medical care. There are even people sick with controversialised illnesses, especially Long Covid, who use the rhetorics of controversialisers to drive a wedge between us and them, in an attempt to persuade state and healthcare actors to legitimise their illness at the expense of ours. 

In light of the immense suffering of people sick with controversialised illnesses, any relevant move that doesn’t oppose this controversialisation consitutes a shocking lack of solidarity. Such a lack of solidarity is hardly surprising—though appalling—coming from the masses of ableist abled people who regularly abandon and harm disabled people in an attempt to escape the thought that they too will almost certainly become disabled. It is only slightly more surprising when it comes from usually white bourgeois people disabled with legitimised illnesses, who are deeply invested in depicting themselves as good disabled people by contrast to us. The term “lateral ableism” is often used to describe ableism perpetuated by disabled people towards people disabled differently to them. But the term is inadequate here, because it fails to capture the dynamics at hand: that people who are comparatively benefitting from state and social support are participating in and compounding others’ state and social abandonment in an effort to increase said support for themselves. A more adequate term for this dynamic might be vertical ableism, or in the words of @twitchyspoonie, good old “punching down”.

But resisting the controversialisation of illness is not just a matter of solidarity with those whose illnesses have been controversialised. I have argued that the controversialisation of various illnesses serves not only to abandon those of us who suffer from them, but also, through constituting a foundation for ableist austerity politics, to abandon disabled people more generally. Thus to refuse the controversialisation of illness is to defuse the charge of faking in general, to turn away from a political economy of health predicated on the idea that malingering needs to be thwarted, and to resist  the contention that the provision of medical care and assistance needs to rely on invasive biocertification and testing. The fight against controversialisation benefits not just us but all disabled people, indeed all people who, especially if they are subjected to racism, classism, and/or cisheterosexism, will be intimately familiar with the suspiciousness of doctors—a suspiciousness which causes immense harm and is sometimes murderous—but also the suspiciousness of bosses, of kith, and of kin. Struggling against the controversialisation of illness is necessary for the creation of a world where care, including healthcare, is extended according to a logic not of austerity but of abundance; dispensed not by state and private institutions acting in the interest of capital, but by us all, copiously, to each other, for our collective sustenance and communal thriving.