When we feel ill or have pain, and over-the-counter remedies fail, it’s natural to want to know what ails us. If a doctor dismisses our concerns, we can feel misunderstood, trivialized, and ignored in our struggles. We may even be accused of fabricating symptoms for attention or personal gain. 

This experience is common for many people with unexplained conditions, such as fibromyalgia and myalgic encephalitis/chronic fatigue syndrome (ME/CFS), that clinicians have historically had difficulty accepting, writes the University of Amsterdam’s Stuart Blume, D.Phil., professor emeritus of science and technology studies.

Long COVID has been different, however. While there are still instances of patients feeling diminished by their doctors, Long COVID has overall been rapidly accepted by the medical community as a legitimate condition. Here’s what Blume says we can learn from this.*

Long COVID’s quick recognition

Like fibromyalgia and ME/CFS, Long COVID can affect multiple systems and manifest in a wide variety of symptoms that include aching muscles and joints; weakness and fatigue; neurological and cognitive difficulties such as brain fog, headache, and impaired memory, tingling and numbness, and many others. Though certain theories about the cause(s) of Long COVID are gaining traction, they are still only theories. Unlike other mysterious illnesses, however, Long COVID has quickly been recognized as a unique disease and has gained official status in the national and global communities.

Acceptance equals advantage

Acceptance of Long COVID means special treatment clinics are now available for patients. It also means significant funding for research, such as the National Institutes of Health’s $1.5 billion investment into studying Long COVID.

Research is beginning to shed light on those who may be most at risk for Long COVID. Factors linked to prolonged symptoms include:

• Older age
• Female sex
• Poor physical and mental health before the pandemic
• Overweight/obesity
• Asthma

It’s generally agreed that there’s a gender gap, with women being more than twice as likely than men to develop Long COVID. This could provide insight into what’s causing these symptoms, says Blume.

Why the quick acknowledgment?

One major reason Long COVID has gained ground more quickly than conditions like ME/CFS is sheer volume. The University of Michigan reported an average of 43% of people infected with COVID-19 experiencing long-term symptoms—an enormous number with over 90 million people infected in the U.S. alone.

These numbers led to the creation of a public health emergency. People soon found themselves discussing their condition with others online. Critically, people gave their condition an apropos name that combines their experience with the disease itself. This groundswell of patient activity solidified Long COVID and brought in new actors, including scientists. 

In a few short months, Long COVID ascended from patient-only interactions to formal discussions with the World Health Organization. Patients’ experiences have gone a long way in helping to fill the gaps in disease knowledge.

Rethinking disease

Blume believes Long COVID’s rapid ascent has implications for how the Western medical community views disease.

Long COVID doesn’t readily fit the conventional model of evidence-based medicine. This can lead to patients not being taken seriously, and endanger critical patient-provider trust. It can also lead to the stigma felt by many women living with fibromyalgia and ME/CFS. Because of the potential for stigma in Long COVID, the Northwestern researchers call for better diagnostic standards in COVID-19.

Given the “striking contrast” between Long COVID’s reception and that of conditions like ME/CFS and fibromyalgia, however, Blume asks whether we need to go beyond individual diagnosis and give more weight to patient suffering when characterizing disease. “If so,” he says, “surely the place of patient testimony in shaping medical understanding needs to be rethought.”

*Blume, S. (2022, August 17). Learning from Long COVID. Psychology Today. https://www.psychologytoday.com/us/blog/means-ingress/202208/learning-long-covid