Why We Shouldn't Freak Out About Long COVID

The future may reveal a syndrome that afflicts recovered coronavirus patients, but in the meantime, scary headlines about it are exacting a price

 woman wears a face mask while walking under a sign that reads "Relax think COVID free thoughts" during the coronavirus outbreak in San Francisco, May 23, 2020.
woman wears a face mask while walking under a sign that reads "Relax think COVID free thoughts" during the coronavirus outbreak in San Francisco, May 23, 2020. Credit: Jeff Chiu,AP
Opher Caspi
Opher Caspi

Knowledge, it’s usually thought, is power. But is excessive knowledge also necessarily greater power – or is it actually a source of weakness?

Lately we have been inundated with scary reports about a “post-syndrome syndrome.” For example, TheMarker ran a large headline earlier this month: “Body sapped of energy: Corona convalescents who aren’t recovering fully demand recognition from state.” And that same evening, Channel 12 News reported no fewer than 16 frightening symptoms of “long-term damage” from which COVID-19 recoverees have been found to suffer (fittingly, “difficulties in concentrating” appeared on the list twice).

Since then, by the way, lists of this sort, which don’t distinguish between important and less important symptoms, or between common and exceptional ones, have been augmented by additions like “impaired fertility.”

I don’t want to quash the flow of information. Far be it from me to object to the public’s right to know the whole truth. Nor am I suggesting that it’s better to hide one’s head in the sand. My aim is to warn people that exposure to medical information – exactly like exposure to marketing information or commercial content – comes with a price.

Ask any teacher and they’ll tell you how what is said to a pupil can wield an influence over his future. Ask any doctor, and she/he will tell you just how much words and the way they are spoken can affect a patient’s response to treatment.

The explanation for this is simple. Words do not exist separately from their context. They express an idea, and that idea, like a seed, is implanted in the patient’s (or student’s) brain and colors his experience and his response to the surrounding reality – for good or for ill. In other words, a patient’s response to treatment is not a function solely of the surgery he undergoes or the type of medication prescribed; it hinges also on his belief in their success or failure.

In medicine and in neuroscience, this phenomenon – of the response of body and mind to positive suggestion – is called a placebo effect; in the case of a negative suggestion, nocebo. Three examples illustrate the immense significance these have in our lives:

Shaare Zedek corona ward. It’s not surprising that people released from a long hospital stay report a subsequent decline in their quality of life.Credit: Ohad Zwigenberg

• As part of a campaign against wind turbines in Australia, a syndrome was reported among people living close to these electricity-producing apparatuses, that manifested as a rapid heart beat, headaches and nausea, among other side effects. The medical explanation offered for the symptoms was that they were the body’s responses to barely audible sound waves emanating from nearby turbines. Media coverage of the syndrome led to an increase in visits to family doctors in areas in close proximity to such turbines, by people complaining they suffered from just those symptoms. This was, of course, a sort of self-fulfilling prophecy: Healthy people were convinced by the media reports of the ostensible effects that low-frequency sound waves had on them and reported symptoms even when they were not exposed to anything at all.

• In European countries where the number of Google searches about the side effects of statins – the popular cholesterol-reducing medications – increased following extensive coverage of the subject, more people reported side effects as a result of taking them, as compared to other countries in which the same medicines were administered in the same dosages – but where the media did not report widely on the subject.

• In a well-known study, healthy volunteers were asked to inhale a “substance suspected of being problematic” (it was actually clean air) while reporting whether they experienced four symptoms frequently mentioned in the media as reactions to “environmental toxins”: headaches, nausea, itching and fatigue. The volunteers were divided such that the half who inhaled the “substance” were joined by a member of the research team posing as a subject, who reported that he “doesn’t feel well.” The other half inhaled the same substance – the clean air – in the company of a team member who did not mention any symptoms. Among those who partnered with the individual who falsely claimed to feel ill, there was a significantly higher frequency of symptoms reported than among those whose test partner did not complain about any alleged symptoms.

Indeed, many theoretical models point to the considerable influence that social norms exercise over our own manifesting of symptoms and illnesses. Just as children learn from their parents and from their close milieu how to behave, so we all internalize, from an early age, consciously or subconsciously, symptoms and illnesses as a function of societal conventions. Backaches, for example, can be a result of skeletal and spinal problems, but also of acquired mental distress.

It is possible that what we are seeing now is yet another instance of unnecessary panic, expressed in terms of physical symptoms that often characterize a period of recuperation from a serious illness.

Studies show that this acquired distress is one of the main explanations for variations in rates of incidence of a disease and its manifestations between different societies. A quick perusal of the Wikipedia entry for “culture-bound syndromes” provides a host of examples of “diseases” that are recognized as such in one society but are considered natural reactions in other societies. To this list can be added differences between cultures and societies in the severity of menopause symptoms, the proportion of people suffering from migraines, and even the approach medical practitioners take to physical fatigue. Neurasthenia (neural weakness), for example, is still accepted as an explanation for fatigue in Europe, but not in the United States, where that diagnosis was no longer widespread after the 19th century.

The common denominator of all these examples and many other cases is not that there is no smoke without fire, but that in some cases the smoke becomes very thick and intense with no connection to flames. Many studies show that we are all sensitive to negative suggestion. Patients who take medication packaged with an insert that describes possible side effects in dramatic terms, feel those effects more frequently and with far greater intensity when compared to similar patients whose dose of the same medicine is accompanied by a pamphlet describing possible side effects in more moderate terms.

I am not denying the reality of coronavirus or post-coronavirus. In the future we might come to know a “post-corona syndrome,” just as there is a genuine medical “post-polio” syndrome. It’s too soon to know. But it’s no less reasonable to assume that the media and public opinion will frame their take on “post-corona syndrome” in accordance with the shape and form of the general hysteria displayed by both experts and politicians that has characterized the confrontation with the pandemic to date. This is evidenced by the fact that already now, some are calling the post-recovery syndrome “chronic corona” – analogous to “chronic fatigue syndrome.” This does not mean that we should not believe the symptoms described by people who have recovered from COVID-19 or be indifferent to their suffering. On the contrary: We must probe and investigate the physiology underlying the complaints of those side effects, as well as their accompanying psychological aspects. Indeed, it is our obligation as a society to offer modes of prevention and treatment to those who recover from the virus.

What’s bothering me is not the neglect of people who have recuperated from COVID-19. If there’s anything that characterizes the modern health economy, it’s that we can be absolutely certain that medications and a range of treatments, services, tests and clinics will materialize that are intended solely to serve this public. Yet it’s precisely on this point that we need to dwell: on forging a delicate balance between the responsibility to report credibly and proportionately on the disease and its possible long-term side effects, and creation of completely groundless panic that ends up generating mass illness.

In this photo taken on March 19, 2020, Doctor Matteo Flippini holds a tablet for a patient talking to his relatives, in the ICU room of the Spedali Civili hospital in Brescia, northern Italy. Credit: Sergio Cattaneo / AP

Sixteen post-COVID symptoms were referenced in a series of Channel 12 reports titled “One convalescent a day.” The presenter cited an Italian study, reported in the prestigious Journal of the American Medical Association, that compared the appearance of various symptoms during the acute stage of COVID-19, with their appearance two months later among 143 individuals who had recuperated from the disease and were discharged from the hospital. According to the article, 87 percent of these patients suffered from persistent symptoms, in particular fatigue, respiratory difficulties and joint pain.

However, a closer look shows that 73 percent of the patients/subjects had also had pneumonia and were hospitalized for an average of about 14 days. So it’s not surprising that 44 percent reported a decline in their quality of life about a month after their release from the hospital. Some symptoms – among them diarrhea, loss of the sense of taste and muscle pains – were reported by fewer than 10 percent of the patients. Other side effects were mentioned in the television report – but without the explanation that there is a significant difference between symptoms that affect one’s functioning and others that cause discomfort but are not actually harmful.

Every practitioner of medicine, like anyone who has ever suffered from jaundice, infectious mononucleosis or pneumonia, for example, will describe exactly the same symptoms and the same decline in quality of life. Is it possible, then, that what we are seeing now is yet another instance of the tendentious and unnecessary creation of a new form of psychological panic, expressed in terms of physical symptoms that often characterize a period of recuperation from a serious illness? We must not fall into this trap.

Nevertheless, it seems that everyone is stubbornly trying to do just that. The media has cried out, “Military Intelligence: COVID symptoms persist after recovery – a development of immense significance” (Oct. 7, TheMarker; in Hebrew), on the basis of the finding that “one in every 10 mildly ill coronavirus patients continued to suffer from symptoms during the month after recovery, and 5 percent reported symptoms even months after recovery.” Why not emphasize for the public the 95 percent who have recovered without symptoms – that is, the positive, the commonplace?

It is not the role of news readers who present items in television studios or of the information department of Military Intelligence to educate the public. The Health Ministry and, equally, we physicians, must put an immediate stop to the scary campaigns and instead imbue the public with hope for a full and speedy recovery from the virus. This must be done as a general rule, not as an exception. A message along those lines is an important part of a health policy that promotes individual and national resilience. The message sheet must change. Enough fear-mongering. Onward to maintaining proportions and to hope.

Dr. Ofer Caspi specializes in internal and integrative medicine and holds a PhD in psychology.