It’s the greatest medical scandal of the 21st century. For decades, patients with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) have been told they can make themselves better by changing their attitudes. This devastating condition, which afflicts about 250,000 people in the UK, was psychologised by many doctors and scientists, adding to the burden of a terrible physiological illness.

Long after this approach was debunked in scientific literature, clinicians who championed it have refused to let go. They continue to influence healthcare systems, governments and health insurers. And patients still suffer as a result.

ME/CFS saps sufferers of energy and basic physical and cognitive functions, confining many to their homes or even their beds, often shutting down their working lives, social lives and family lives. The extreme seriousness of this condition, and the fact that there is neither a diagnostic test nor a validated treatment, places a special duty of rigour on doctors and researchers.

Some specialists say the current crisis of long COVID is related to the neglect of similar chronic illnesses, like ME/CFS.

Like other similar, neglected chronic illnesses, it defies a simplistic model of infectious disease in which a pathogen causes a predictable set of easily defined symptoms that alleviate when the bug is destroyed. It challenges our belief in our institutions, because truly contending with what long-haulers go through means acknowledging how poorly the health-care system treats chronically ill patients, how inaccessible social support is to them, and how many callous indignities they suffer at the hands of even those closest to them.

This article is part of a Health Affairs Forefront series titled “New Challenges for Health Care.” The series of five articles focuses on emerging issues that are facing decision-makers at provider organizations, insurers, public agencies, purchasers, and academic institutions in the health care sector. 

Believe it or not, our current pandemic of post-infectious disease—long COVID—isn’t unprecedented. It has a little-known older sibling. Those affected have simply been left to suffer.

Taking a lesson from people with chronic fatigue [syndrome/myalgic encephalomyelitis], many patients with long covid are scaling back daily activity to cope.

Almost three years into the pandemic, she has plenty of company on her quest for an answer. Millions of people around the world have developed Long COVID, or long-lasting symptoms that follow a case of COVID-19. Many of these symptoms look quite similar to the fatigue, cognitive decline, and crashes after exertion (formally known as post-exertional malaise, or PEM) observed among ME/CFS patients.

Only a couple dozen doctors specialize in chronic fatigue syndrome (ME/CFS). Now their knowledge could be crucial to treating millions more patients.