Learning from Long Covid

When we’re suffering from aches and pains and a Tylenol doesn’t help, we invariably want to know what’s wrong with us. We want a name for it, a diagnosis. And so we consult a physician. What if that consultation doesn’t give us what we want? ("Maybe you’re just stressed?") We feel misunderstood, our suffering trivialized or denied. Normal daily life remains a struggle. And without a diagnosis we’re at risk of being accused of malingering, or of missing out on sickness-related benefits

This is a common experience among people suffering from a condition for which medicine has no explanation. Some such conditions are quite common. (Fibromyalgia, for example, affects about 4 million U.S. adults). Symptoms are typically diverse, and may include physical, neurological, and cognitive impairments. Since many medical professionals aren’t convinced that some of these are real diseases, obtaining a diagnosis can be difficult: 90% of Americans with Chronic Fatigue Syndrome (CFS/ME) are said not to have been diagnosed.

Long Covid (aka Long-haul Covid or post-Covid condition)

Many people who contract Covid-19 complain of symptoms persisting long after the acute phase of the illness has passed. Here too persistent symptoms range from muscle ache and shortness of breath to neurological and cognitive complaints. People who had a mild or moderate infection are at least as likely to be affected as those who were hospitalized. In a study of non-hospitalized "long haulers," researchers at Northwestern University found common neurological symptoms that patients referred to as “brain fog," headaches, and numbness or tingling. Neurologists at UC San Diego found that 89 percent of participants in their study were experiencing fatigue and 80 percent reported headaches. Other common neurological symptoms included memory impairment, insomnia, and difficulty concentrating.

The variety of symptoms is similar to those reported by people with CFS/ME. And just as with CFS/ME and fibromyalgia, the cause of Long Covid is unknown. But unlike the other unexplained diseases, Long Covid is not what anthropologist Joseph Dumit once called an "illness you have to fight to get." Unlike the other conditions, Long Covid was rapidly acknowledged as a distinctive pathology.

Consequences

As a result, specialized clinics were established and generous funds for research were made available. In the U.S., the National Institutes of Health committed $1.5 billion, though there have been complaints about the slow distribution of those funds

Epidemiological studies are providing insights into which groups are most at risk of long-term post-Covid-19 symptoms. Pooled results from various British studies suggest that Increasing age, female gender, white ethnicity, poor pre-pandemic general and mental health, overweight/obesity, and asthma are associated with prolonged symptoms. All studies agree that there’s a gender difference. These numbers can provide clues to causation: The Northwestern study found a female to male ratio of 2.3 to 1. This is reminiscent of autoimmune diseases such as multiple sclerosis (2:1) and rheumatoid arthritis (3:1).

Gaining recognition

Why has Long Covid gained rapid recognition while conditions such as CFS/ME did not? Numbers certainly played a role. Though estimates vary, they are all large. Reviewing research reports from around the world, statisticians from the University of Michigan found that on average 43% of people who had been diagnosed reported long-term symptoms. Bearing in mind how many people were infected in the first place – in the U.S., more than 90 million — the numbers likely to be suffering from long-term after-effects are huge.

As infection rates rose, Covid-19 became a public health emergency. Despite the lack of knowledge, action had to be taken. People suffering long-term symptoms soon found each other on social media and compared stories, frequently of medical denial. Crucially, and despite the variety of their symptoms, sufferers adopted a common name. The term ‘Long Covid’ (or ‘Long-haul Covid’) incorporates the condition into the disease itself. (The World Health Organization’s preferred term, "post Covid condition," does not).

As Felicity Callard and Elisa Perego have written, "Through such acts Long Covid solidified, moving from patients to multiple new actors – with some conventional scientific actors arriving on the scene after patients. We note the speed of consolidation: Long Covid and Long-haul Covid moved from patients to meetings with the WHO in just a few months."

Pooled experiences provided the "patient-generated evidence" which then helped fill the knowledge gap.

What lessons should be drawn?

Long Covid does not easily fit into the dominant evidence‐based practice and the biomedical model of health, which rely on objective indicators of disease. Nevertheless, there’s no doubt that vast numbers of people are suffering from the effects, which are both direct (leg pain, fatigue, "brain fog") but also indirect. Being disbelieved, and having one's medical complaints not taken seriously, can imperil the trust on which a therapeutic relationship depends. Stigma can also be an indirect effect. Thus, the Northwestern authors point to the dangers of stigma, as experienced by women with fibromyalgia and CFS. This potential stigma further highlights the need for improved diagnostic “gold standards” for SARS-CoV-2 infection.

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While this is surely true, doesn’t the striking contrast between Long-Covid and the other unexplained diseases lead us beyond rethinking how Covid-19 is diagnosed in individual cases? Doesn’t it suggest that morbidity, including suffering, has to be given greater weight in the very characterization and delineation of diseases? If so, surely the place of patient testimony in shaping medical understanding needs to be rethought.