This article is part of the following series: Dispatches from the pandemic
Is long Covid disseminated by newspapers?
On April 14th, 2021, the British journalist and writer George Monbiot published an article entitled “Apparently just by talking about it, I’m super-spreading long Covid.” (Monbiot, 2021). Monbiot had learned that during a recent public presentation Michael Sharpe, professor of psychology at Oxford University and founder of a clinic specialized in the treatment of long Covid, cited among the causes of this condition information diffused by the media, and quoted as an example an earlier article by Monbiot (Sharpe, 2021). Monbiot then discovered that Sharpe had led a clinical trial – the PACE trial – of treatment of chronic fatigue syndrome (CFS) through a combination of cognitive and behavioral therapy and gradual introduction of exercise. The conclusion of the PACE trial, published in 2011, was that more than 70% of the patients showed marked improvement. These results indirectly indicated that CFS is above all a psychosomatic condition (White et al., 2011). In the talk discussed by Monbiot, Sharpe brought to the fore important similarities between CFS and long Covid, and argued that treatment of the new syndrome should be grounded in the principles found to be effective in treating CFS.
The PACE trial had an important impact, especially since its conclusions were published a short time after the XMVR virus scandal. Briefly, in 2009 a group of researchers from the Whittemore Peterson Institute for Neuro-Immune Disease in Nevada, led by the virologist Judy Mikovits, announced that a new retrovirus, XMRV, was strongly associated with CFS (Lombardi et al, 2009). This study, published in Science, had a wide echo, but its results were never reproduced. The XMVR episode discredited the whole area of search for a biological cause of CFS. The virologist Robert Gallo, from the Institute of Human Virology of the University of Maryland, described the episode in 2011 as a “bad dream,” while the psychiatrist Simon Wesseley of King’s College, London, declared that the discredit thrown on chronic fatigue studies by the XMVR story was so great that “people will rather go over the Niagara in a barrel than ever getting involved in CFS again” (Cohen and Enserink, 2011). The results of the PACE trial seemed to confirm that CFS is not an organic disease or post-viral syndrome. These results were, however, strongly criticized by associations of CFS patients, but also by other scholars. Researchers who re-analyzed the rough data of the PACE trial, obtained after a long battle in the courts, concluded that this clinical trial was poorly planned and executed, and its conclusions were far too optimistic (Geraghty, 2017). The British National Institute for Health and Care Excellence (NICE) no longer recommends the approach advocated in the PACE trial (NICE, 2020a). The controversy is far from being closed. Sharpe and his colleagues continue to insist that SCF has a strong psychosomatic component, that the best treatment of this condition is through a combination of physical re-education with psychotherapy, and that long Covid, a pathology with a very similar profile, should be treated by the same approach (Sharpe, 2021) .
The main obstacle for a precise definition of long Covid is the absence of clear-cut diagnostic criteria for this condition. Modern Western medicine is grounded in the concept of “specific diseases.” This concept, first developed in the 19th century, became more important in the 20th century with the rise of “bureaucratic medicine.” The professional, institutional, social, economic, and legal structures of present-day medicine depend on diagnosis of distinct “diseases.” Diagnosis shapes patients’ medical trajectories, and illuminates their understanding of their symptoms. It also gives them specific rights (e. g. to receive compensation for lost days at work, to be entitled to an invalidity pension), and confers specific duties (e.g., to prevent infecting other people). Diagnosis is also indispensable for the organization of health services, public health interventions, and the planning of health budgets (Rosenberg, 2002). It is impossible to imagine the management of the Covid-19 epidemic in the absence of diagnostic tests that reveal infection with SARS-CoV2 ( Löwy, 2020). The care of patients becomes more complicated when their idiosyncratic suffering cannot be easily explained by a specific pathology. In such cases physicians speak of “syndromes” or “diseases” defined by their symptoms, often a fragile and contested solution, or about “psychogenic disorders.” (Aronowitz, 1999; Rosenberg, 2006). Recently, the participation of patient associations in the definition and management of their conditions has added an additional level of complexity to the management of such “symptom-based” conditions.
Long Covid patients and the rise of a new pathological entity
Numerous viral infections have long-term sequels. The long-term consequences of infection with SARS-CoV2 include, however, several distinct entities. The first is the direct consequence of severe Covid, especially for patients who have been treated in intensive care units. These patients frequently suffer from the harsh and sometimes permanent effects of their traumatic experience. The second is “persisting Covid.” In the early stages of the epidemic physicians viewed Covid as a binary entity. Patients either had a turn for the worse, or got better rapidly and were fully cured approximately 20 days after the onset of their symptoms. They learned later that the symptoms of many patients – such as fever, fatigue, diffuse pain, respiratory problems — did not go away after their PCR test turned negative. These symptoms, like the those of Peter Piot, director of the London School of Hygiene and Tropical Medicine, might last several months (McNeil, 2020). They might also leave permanent traces. Recent studies have pointed to the existence of a significant excess of mortality among people who have had Covid, in the year following their infection (Al-Aly, Xie and Bowe, 2021).
The entity described as “long Covid” is not identical with “persisting Covid,” although the boundary between these two is very fluid. The term “long Covid” usually does not refer to a direct continuation of previous disease symptoms, but to an entirely new set of symptoms that may start weeks after the patient is “cured,” are multiform, and change over time. It is also mainly a female condition. Around 80% of patients included in French long Covid cohorts are women, aged 20 to 45. (Salmon-Ceron et al, 2020; Tran et al, 2021). These women frequently had a “mild” case of Covid, and were in excellent health before the onset of their disease. The feminization of long Covid is problematic. It follows an historical tendency to disregard women’s complaints, especially those for which one cannot find well-defined causes, and classify them as psychosomatic, a claim that can be traced to the original definition of hysteria. The history of neglect of endometriosis is an especially telling illustration of such a trend (Batt, 2011).
The term “long Covid” was popularized by two British university professors, Elisa Prego and Felicity Callard. Callard was one of the first to point to the debilitating consequences of a “very mild” Covid (Callard, 2020a). Callard and her colleagues promoted the term “long Covid,” defined as a multiphasic and cyclical condition linked with an initial episode of Covid-19 (Prego et al, 2020). They stressed that long Covid is probably the first disease that was first defined through exchanges among patients on Twitter, Facebook, and other social media, then migrated to traditional media and finally reached scientific publications and political debates. They also brought to the fore similarities between long Covid and CFS – a view also shared by Charles Shepherd, the medical adviser of the British CFS association (Prego and Callard, 2021). The director of the NIAID, Anthony Fauci, noted that, “it’s extraordinary how many people have a post-viral syndrome that’s very strikingly similar to chronic fatigue syndrome.” (Jackson, 2020). Reflecting upon the consequences of her long-term disablement, Callard remarked that thanks to the growing visibility of long Covid there is a good chance people who suffer from severe CFS will finally receive the attention to which they are entitled. Since in the case of long Covid there is a strong link between a viral infection and pathological manifestations, it is highly probable that CFS too will be classified among post-viral syndromes (Callard, 2020b). Sharpe, however, arrived at the opposite conclusion. For him, similarities between these two conditions point to the importance of psychosomatic elements in long Covid, and indicate that people with this condition should undergo a “psychologically informed rehabilitation” (Sharpe, 2021).
Chronic fatigue syndrome and fibromyalgia: “real” diseases?
Diseases are situated entities which not infrequently have different names, descriptions and treatments in different countries (Payer, 1988). This is especially true for “symptom-based diseases” that escape precise biomedical definitions, such as CFS or another pathology that effects mainly women, fibromyalgia (FM). In their “pure” form the two conditions are seen as different. FM is characterized mainly by chronic pain, and CFS by intolerance to effort and ‘brain fog’. Experts agree nevertheless that “pure” forms of these two conditions are rare. The great majority of patients diagnosed with FM have intolerance of effort and cognitive troubles, while the great majority of CFS patients complain about severe articular and muscular pain (Wessely, 1990, pp. 82-97; Meus et al, 2016). Moreover, the decision how to classify the patients’ complaints depends to a large extent on situated definitions of diagnostic criteria. “Local biologies” may play an important role in naming and defining pathological conditions (Lock, 2001). In the US, CFS is more visible than FM. In 2015 the Institute of Medicine (now the National Academy of Medicine) published a report on CFS that emphasizes patients’ intolerance to effort – physical, intellectual or emotional. Accordingly, this document proposed to rename SCF “systemic exertion intolerance disease” or SEID (IOM, 2015). In France FM has much higher visibility that CFS, and diagnoses of CFS are relatively rare. The collective expertise on FM published by the French National Institute of Health (INSERM) encourages physicians to focus on symptomatic treatment of chronic pain in FM and to apply the biopsychosocial model of disease to the understanding of this condition. French specialists explicitly recognize the role of “cultural elements” in studying symptom-based diseases. For this reason, they explain, it is not possible to transpose conclusions from studies of FM made in English-speaking countries to France (INSERM, 2020, pp. 17-18).
The observation that the great majority of FM and CFS patients are women in all probability has contributed to the view that these conditions may have a strong psychosomatic (or today, “biopsychosocial”) component. The perception of “diseases of mental exhaustion” has radically changed with time. In the 19th century “neurasthenia” was a status-enhancing condition, because mental exhaustion was seen as an organic affection: the depletion of reserves of “mental energy.” Moreover, this was a disease of highly intelligent men, exhausted by their intensive intellectual labor. In the 20th century, the previous view of “neurasthenia” as a somatic event that induced psychic phenomena was gradually replaced by its perception as a psychological or psychiatric impairment that produces somatic manifestations. At the same time “neurasthenia” lost its elevated status as a male pathology produced by intense intellectual effort, and started to be perceived as a female pathology produced by women’s lack of mental resilience and inability to face the demands of the modern world (Lian and Bondevik, 2015). Indeed, in the 1980s researchers defined conditions such as CFS and FM as “affective spectrum disorders,” closely related to other psychiatric pathologies (Hudson and Pope, 1989), and described FM patients as having an “obsessive compulsive personality, maladaptive response to loss and prepain ergomania,” and suffering from a “major conflict between basic ego needs (dependence and passivity) and the needs of the ideal ego (independence and activity)” (Alfici, Sigal and Landau, 1989).
In the 1990s two well-known scholars, the Canadian historian of medicine Edward Shorter and the US writer and feminist critic Elaine Showalter, independently proposed that CFS is a modern form of hysteria. Both Shorter and Showalter reacted to the failure of the efforts, conducted in the 1980s, to link CFS with a viral infection, especially with Epstein Barr Virus (EBV). Shorter, who studied CFS in the context of the long history of psychosomatic conditions, explained that after the EBV fiasco the majority of the researchers in this domain reached the conclusion that CFS and the similar pathology, FM, were psychosomatic disorders. Alas, many patients continued their totally futile search for material causes of FM and CFS (Shorter, 1992, pp. 367- 375). Showalter shared Shorter’s opinion. She added, quoting the British psychiatrist Simon Wesseley, that women who continue to deny that CFS is an “affective disorder” and refuse psychological help, sabotage their chances for a cure (Showalter, 1997, pp 115-132). CFS patients continued, however, to strongly resist this point of view – as do long Covid patients today.
Long Covid and institutions
In the second half of 2020 patients’ activism led to an increased visibility of long Covid. In December 2020 NICE published guidelines for the treatment of “persisting Covid.” The guidelines distinguish between “acute Covid,” up to 4 weeks after the infection, “continous symptomatic Covid,” between 4 and 12 weeks, and “post-Covid syndrome,” when symptoms that continue beyond 12 weeks cannot be explained by an alternative diagnosis, are fluctuating, can change with time, and are not related to the severity of the original disease. The document adds that the term “long Covid” can include symptoms that appear 4 to 12 weeks after the initial infection, as well as those that continue beyond 12 weeks (NICE, 2020b). In France, the Haute Autorité de Santé (HAS) published in February 2021 a short guide for management of protracted Covid (Covid prolongé). The HAS document also explains that the symptoms of such “protracted Covid” are often fluctuating, can radically change over time, and include physical, neurological and cognitive manifestations (“Covid fog”). It recommends a holistic and individualized approach to this pathology that includes symptomatic treatment and psychological support – proposals that resonate with recommendations for treatment of FM in France (HAS, 2021).
The British and the French documents explicitly recognize a link between “prolonged” and “acute” Covid, although they do not express an opinion about the nature of such a link. Long Covid patients claim, however, that many physicians continue to attribute their suffering exclusively to “psychogenic” causes. In February 2021 the French Parliament adopted a resolution that called on the government to reinforce actions against severe and prolonged forms of Covid. The resolution did not propose any concrete interventions, and did not identify long Covid as a professional disease (if contracted for example by a health worker) or as a chronic condition accepted as such by the French Social Security (Associated Press, 2021). Nevertheless, Pauline Oustric, president of an important patient association, “Après J20-Association Covid Long,” declared that the parliamentary debate was an important step forward because the recognition of long Covid as a distinct entity “brings to the fore the fact that this is a disease that exists, and is not a psychosomatic entity” (Roucaute, 2021). The key term here is “a disease that exists” (“une maladie qui existe”). Long Covid patients do not object to the notion that physical and mental suffering are closely entangled, but they strongly resist the argument that their problem is above all “in their head,” and their physiological symptoms are secondary manifestations of psychological issues, not the other way around. As one of the British spokespersons for long Covid patients explained, “no cancer patient is offered psychotherapeutic interventions as treatment; rather, these therapies play a supportive role for patients who require them. In contrast, cognitive behavioral therapy has been recommended as a first-line treatment for CFS for more than a decade” (Salisbury, 2021). The dominance of the “biopsychosocial” model of CFS, with its emphasis on the role of thought and behavior rather than pathology can explain, activists believe, why long Covid patients – in great majority women, a group with a long history of neglect and “psychiatrization” of their complaints – are now facing such limited options in clinics.
Ilana Löwy is a senior researcher emerita at INSERM, Paris. Trained as a biologist, she then retrained as a historian of science. Her main research interest are relationships between laboratory sciences, clinical medicine and public health, material culture of science and medicine, and intersections between gender studies and biomedicine.
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