Why Psychological Explanations for Long COVID Are Dangerous

As patients with myalgic encephalomyelitis (ME) and their allies rally for better support, lessons from the history of ME can provide insights into approaching long COVID and improving research and care for those suffering from both conditions.

Many of the primary symptoms of ME, such as post-exertional malaise, fatigue, and cognitive dysfunction, also appear in long COVID cases. Researchers estimate that nearly half of long COVID patients meet the diagnostic criteria for ME. Unfortunately, the history of ME offers a cautionary tale about the dangers of relying on psychological explanations for physiological conditions.

ME, also known as ME/CFS or chronic fatigue syndrome, was initially identified as a "chronic, mononucleosis-like illness" with persistent viral activity almost four decades ago. However, influential scientists once attributed patients' symptoms to "dysfunctional illness beliefs," leading to psychological models dominating public understanding and diverting funding away from physiological research.

The journey of one patient, who happens to be a medical rhetoric expert, illustrates this problem. Despite her professional expertise, she spent years being misdiagnosed and mistreated as clinicians attributed her symptoms to stress.

Over the years, researchers found physiological underpinnings for ME, including neuroinflammation, mitochondrial abnormalities, immune irregularities, and chronic infections. Yet, psychological models persisted, which led to the underfunding of research and the mismanagement of ME patients.

The infamous PACE trial, the largest study on ME, propagated a misleading narrative by labeling ME as a psychological disorder treatable with cognitive behavioral therapy (CBT) and graded exercise therapy (GET). However, the methods and outcomes of the trial were flawed, as it recommended treatments that often harmed patients or made their conditions worse.

Despite the discrediting of CBT and GET as ME treatments, some PACE investigators and other studies have resurfaced with arguments about patients' "illness beliefs" as the root cause of their symptoms. This approach dismisses the physiological basis of long COVID and undermines patients' suffering.

While psychological interventions might be helpful for some patients, they cannot be the sole approach to addressing complex pathological and physiological abnormalities. Believing that patients just need to change their mindset trivializes their suffering and denies them necessary resources. This skepticism often leads to insurance and disability benefit denials.

The history of ME provides critical lessons for long COVID. Approaches to long COVID should rely on relevant clinical findings from ME research, cautioning against recommending exercise for post-exertional malaise and highlighting the importance of standardized disease definitions. Additionally, the findings of metabolic, immune, vascular, and mitochondrial abnormalities in ME research should be applied to long COVID cases.

To provide faster relief to millions of patients worldwide, it's crucial for both ME patients and researchers to have a voice in governmental responses to long COVID. This collaboration can help build upon each other's findings and create more effective solutions for patients facing these debilitating conditions.