The medical gaslighting of long COVID patients could be nearing its end

Presiding last month at a hearing of the Senate Committee on Health, Education, Labor and Pensions, Sen. Bernie Sanders (I-Vt.), addressed the many issues faced by patients suffering from long COVID, an often debilitating condition that can persist for months or years following a SARS-CoV-2 infection. 

In addition to inadequate research funding and the difficulty of accessing quality care, Sanders observed that “far too many patients have struggled to get their symptoms taken seriously” because “far too many medical professionals have either dismissed or misdiagnosed their serious health problems.”

Sanders knew what he was talking about. The medical profession often reacts slowly, and sometimes obdurately, to novel conditions that do not fit previously known categories, especially in the absence of available tests or biomarkers that can succinctly tell the doctor “what’s wrong.”

Angela Vazquez knew something was wrong in March 2020, but she didn’t have a name for it. An early COVID-19 patient, her relatively mild case of the virus progressed into an “increasingly scary set of symptoms,” including seizures, heart palpitations, shortness of breath and confusion. A serious athlete for decades past, she became unable even to walk for days at a time. Doctors were not much help. 

As Vazquez put it, she was “medically gaslighted,” with her persistent symptoms brushed off as anxiety or depression.

Vazquez was only one of a multitude of COVID-19 “long haulers,” by now comprising over 6 percent of American adults, who have developed the baffling condition called “long COVID.” 

At first finding little understanding or even acknowledgment from the medical profession, Vazquez and others banded together in the Patient Led Research Collaborative focusing on long COVID and associated conditions, and advocating for policies and funding “that enable patients, particularly the most marginalized, to access care and live with dignity.”

While some physicians did grasp the problems presented by long COVID, many others were dismissive and disbelieving. 

In a Wall Street Journal opinion piece, a young psychiatrist ridiculed the condition as “largely an invention of vocal patient activist groups,” insisting instead that it was a “psychosomatic-symptom disorder.” 

A prominent Harvard pulmonologist was slightly more respectful, surmising that the condition may be a consequence of “psychosocial strain” due to “the sharp increase in psychological distress amid the tragedy of the pandemic.”

Such skeptical and often unsympathetic responses were unsurprising — indeed, predictable — to another group of patients, numbering in the millions, who have endured comparable suspicion for decades. 

The disease once known as chronic fatigue syndrome, and now generally called myalgic encephalomyelitis, or ME/CFS, with devastating symptoms strikingly similar to long COVID, was investigated by the Centers for Disease Control and Prevention in the mid-1980s, and almost immediately discounted as “yuppie flu” and even a “fashionable form of hypochondria.”

As with long COVID, the absence of a definitive test led to a reflexive assumption of psychological causation, crowding out all other explanations. The available treatments were long limited to cognitive behavioral therapy and graded exercise therapy, on the theory that the condition was essentially psychogenic, with symptoms caused by “unhelpful illness beliefs” and deconditioning.

Major governmental health agencies — including the U.S. National Academy of Medicine (formerly the Institute of Medicine), and Britain’s National Institute for Health and Care Excellence — eventually rejected the psychogenic theory of myalgic encephalomyelitis and identified it as a physiological disease. Nonetheless, revanchist psychiatrists and others have continued to insist that it is an “illness without disease,” to be treated with psychotherapy and an exercise regimen.

Fortunately, times are changing. No senator, Democrat or Republican, at the recent hearing questioned the medical reality of long COVID, perhaps because at least three senators, including committee member Tim Kaine (D-Va.), have themselves suffered from it. 

As Sen. Ed Markey (D-Mass.) put it, “It is unacceptable to require people to fight their chronic illness and a health care system that doesn’t recognize it.” 

Likewise, Sen. Lisa Murkowski (R-Alaska) sympathized with patients who had been “challenged” about their illness and told “it’s not real; you’ll get over it.”

Importantly, Sen. Bill Cassidy (R-La.), who is a primary care physician, observed the similarity of long COVID to chronic fatigue syndrome, where there has also been a positive development.

Just last week, the National Institute of Health published the encouraging results of a seven-year study of myalgic encephalomyelitis, comprising the deepest and most extensive investigation of the “underlying pathophysiological mechanisms” of the disease.

The study determined that the condition is not a psychiatric disorder, but instead there are “clear biological markers” of the disease, including notable “physiological differences in the immune system, cardio-respiratory function, gut microbiome and brain activity of the ME/CFS patients” compared to healthy controls. The study concluded that cognitive behavioral therapy and exercise, the interventions routinely promoted in the past as curative, cannot “address the root cause” of the disease.

The NIH researchers have posited that “immune dysfunction” is a potential cause of ME/CFS. As one of the study’s peer reviewers noted, it is as though the immune system is “engaged in a long war against a foreign microbe” that it cannot clear, leading to the chronic inflammation responsible for symptoms.

Although there is still no cure for long COVID or myalgic encephalomyelitis, it has already been a good year for patients of these chronic diseases, with deep dives into both conditions. The U.S. Senate appears ready to increase research funding and accountability for long COVID, and the NIH appears to be on a path to untangling the nature of ME/CFS. 

Dr. Avindra Nath, who led the NIH study, put it this way: “Whatever we learn from ME/CFS will benefit long COVID patients, and whatever we learn from long COVID will benefit ME/CFS patients.

Steven Lubet is the Williams Memorial Professor Emeritus at the Northwestern University Pritzker School of Law. He has been living with ME/CFS since 2006.