In September 2025, Robert F. Kennedy, Jr., Secretary of the Department of Health and Human Services, hosted a roundtable event on long Covid. “This was not a listening session—it was an action session,” he assured the participants at the end of the day. “We are driving solutions to diagnose, prevent, and treat Long COVID, and we stand with the patients and families whose lives it has disrupted. Today’s steps mark the start of a sustained national effort.” Seven months’ later, his department’s sole accomplishment has been the publication of a website containing information that is widely available elsewhere.
Long Covid refers to symptoms lasting at least three months after a positive-Covid test. Approximately twenty million people in the United States live with the condition. It closely resembles myalgic encephalomyelitis, often called chronic fatigue syndrome or ME/CFS. Both are post-viral illnesses. Both disproportionately affect women. And both have many of the same symptoms, most notably fatigue, brain fog, and depleted energy after physical or mental exertion. Indeed, the emergence of long Covid initially inspired hopes that ME/CFS would receive the attention it had long deserved; many ME/CFS advocacy groups extended their purview to include long Covid.
Another similarity between long Covid and ME/CFS is that people with both disorders face widespread skepticism that their symptoms are real. Like people with other invisible and “contested” diseases, including, Gulf War Syndrome, fibromyalgia, and multiple chemical sensitivities, those with ME/CFS and long Covid report going from doctor to doctor to find one who can explain the source of their troubles. Large proportions of both groups remain undiagnosed. Family members, friends, and colleagues doubt that people with the disorders suffer as much as they claim. Suspicious of workers who request accommodations, many employers fail to provide them.
Finally, people with both conditions played a major role in publicizing them. By 1990, two years after the Centers for Disease Control and Prevention chose the name chronic fatigue syndrome for a new cluster of symptoms, four national advocacy organizations and 400 local support groups existed. Jennifer Brea, the co-founder of #MEAction, a global advocacy group, was a twenty-eight-year-old-Harvard graduate student when she developed a host of symptoms. Because her doctors did not believe her account, she “went online.” There she discovered “thousands of people all over the world living with the same symptoms, similarly isolated, similarly disbelieved.”
As early as August 2020 (approximately seven months after the first Covid-19 cases were detected in the US), thousands of people with long Covid had joined support groups on Facebook. A 42-year-old police officer told an interviewer, “I was so scared. I was like—just with all the body changes, and all this weird stuff happening to your body, and the feelings, and so I joined that Facebook Long Covid group. I’ve got to tell you that made me feel so good, because there are thousands of people who have the exact same symptoms that I had…It gave me hope.”
Researchers have not always provided the validation sufferers want. For many years, the massive, but highly misleading, $5 million British study known as the PACE Trial heightened the belief that ME/CFS was not a legitimate disease. The study relied on the notion of “learned helplessness.” The psychologist Martin Seligman coined the term in the late 1960s after observing that animals repeatedly subjected to aversive stimuli gradually understood that they could not assert control and eventually stopped trying. Applied to humans, the concept describes individuals who believe that all attempts to alter a bad situation are doomed to failure and thus come to accept their fate. Linking learned helplessness to depression, Seligman sought ways to increase individuals’ resilience and was an enthusiastic supporter of cognitive behavior therapy.
The theory was especially prominent in Britain, where some of the most influential research on chronic fatigue syndrome was conducted. A leading investigator was Simon Wessely, professor of psychological medicine at the Institute of Psychiatry, King’s College, London, who wrote with his colleagues in 1991, that the symptoms of CFS produce “a state of ‘learned helplessness,’ being potent, aversive, and uncontrollable, and may also trigger or exacerbate the mood disorder that is found in many patients. Continuing attribution of all symptoms to a persistent, untreatable ‘virus,’ continued to increase helplessness, although it preserves self esteem. Avoidant behavior (which is reinforced by the advice currently offered to patients) sustains symptoms, by decreasing activity tolerance and increasing sensitivity to any stimulation.” The remedy was cognitive behavioral therapy to reorient patients’ understanding of their illness and lessen their fears about engaging in physical activity.
The PACE Trial, which British researchers launched in 2005, reminds us that the concept of learned helpless retained its hold over researchers for many years. Wessely was a major supporter. The 600 participants in the trial were randomly allocated to four treatments provided for twelve months by a group of doctors, occupational therapists, physiotherapists, and psychological therapists. One group received the standard specialist medical care (SSMC), including advice about coping with the illness and medications for insomnia and pain, if considered appropriate. The second group received SSMC plus adaptive pacing therapy (APT), which provided advice about how patients could gear their activities to their energy levels. The third group received the first two therapies plus both cognitive behavior therapy (CBT), which sought to correct the beliefs that hindered recovery, and graded exercise therapy (GET), which helped patients gradually increase their physical activities.
The ideas of learned helplessness pervaded the manual the CBT therapists received. The authors acknowledged that physical factors might trigger CFS but emphasized the psychological issues that prolonged it. A major goal was thus to encourage participants to “see symptoms as temporary and reversible and not as signs of harm or evidence of fixed disease pathology.”
The results generated enormous excitement. A 2011 article in The Lancet reported that GET and CBT were effective treatments for people with CFS. The popular press in both Britain and the US spread the news to a broad audience. The study also shaped medical care in both countries. The CDC, the Mayo Clinic, Kaiser Permanente, WebMD, and the American Academy of Family Physicians were among those that based their treatment protocol on the PACE trial’s recommendations.
But the results infuriated people with ME/CFS. “Patients like me were immediately skeptical,” commented science writer Julie Rehmeyer. “The results contradicted the fundamental experience of our illness.” One of the distinctive features of the disease is that even mild exertion can severely exacerbate the symptoms. “The researchers argued that patients…who felt sicker after exercise simply hadn’t built their activity up carefully enough,” Rehmeyer continued. “Start low, build slowly but steadily, and get professional guidance, they advised. But I’d seen how swimming for five minutes could sometimes leave me bedbound.”.
Soon researchers began to debunk the study. In February 2015 the Institute of Medicine (now the National Academy of Medicine) published Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Defining ME/CFS as a “serious, debilitating” condition, the report condemned the “misconception that it is a psychogenic illness or even a figment of the patient’s imagination.” Later that year, the Virology Blog run by Vincent Racaniello, a prominent Columbia University microbiologist, posted a report concluding that the PACE trial violated basic scientific principles and that its treatment recommendations were useless and often harmful. The following month medical researchers at leading US universities, including Columbia, Stanford, and Berkeley, wrote an open letter to Richard Horton, the editor of the Lancet, urging the journal to obtain an independent review of the study. The journal also received a petition with 10,000 signatures demanding that it publish a retraction of its original article on the PACE findings. More recent studies report that brain changes in people with ME/CFS reduce their tolerance for physical and mental exertion and increase their fatigue.
Despite the many studies undermining the PACE Trial, the belief that ME/CFS and long Covid are imaginary or psychogenic disorders remains widespread. People living with both conditions thus continue to encounter derision and disbelief from health providers, family, friends, colleagues, and employers. The “sustained national effort” Kennedy promised for long Covid must be extended to ME/CFS and begin now.
Emily K. Abel is Professor Emerita at the UCLA Fielding School of Public Health. Her forthcoming book is Listening to Dementia: Advocating for Dignity and Autonomy (NYU Press, 2026).
Sources:
“HHS Advances Fight against Long COVID with Patient Roundtables and New National Efforts,” Press Release, Department of Health and Human Services, September 18, 2025.
Larry Au, et al., “Long Covid and Medical Gaslighting: Dismissal, Delayed Diagnosis, and Deferred Treatment,” SSM-Qualitative Research in Health, September 7, 2022.
Ferlicity Callard and Elisa Perego, “How and Why Patients Made Long Covid,” Social Science & Medicine, October 7, 2020.
Trisha Greenhalgh, et al., “Long Covid: A Clinical Update,” Lancet, August 17, 2024.
Ziyad Al-Aly., et al., “Long COVID, Science, Research, and Policy,” Nature Medicine, August 2024.
Katherine C. McNabb, “’It Was Almost Like It’s Set Up for People to Fail,’ A Qualitative Analysis of Experiences and Unmet Supportive Needs of People with Long Covid,” BMC Public Health, 2023.
Wolfson Institute of Preventive Medicine, “Pace Trial,” https://www.qmul.ac.uk/wiph/centres/centre-for-psychiatry-and-mental-health/research/pace-trial/
Bart Stouten, Ellen M. Goudsmit, and Neil Riley, “The PACE Trial in Chronic Fatigue Syndrome,” Lancet, May 28, 2011.
David Tuller, “Trial by Error,” Virology Blog, http://www.virology.ws/2015/10/21/trial-by-error-i/; http://www.virology.ws/2015/10/22/trial-by-error-ii/;http://www.virology.ws/2015/10/23/trial-by-error-iii/
Julie Rehmeyer, “Bad Science Misled Millions with Chronic Fatigue Syndrome: Here’s How We Fought Back,” STAT, September 26, 2016.
Jennifer Brea, “What Happens When You Have a Disease Doctors Can’t Diagnose?” TED Radio Hour, NPR, February 10, 2017.
Ed Yong, “Long-Haulers Are Redefining COVID-19,” Atlanticd, August 19, 2020.
Ed Yong, “Long COVID Has Forced a Reckoning for One of Medicine’s Most Neglected Diseases,” Atlantic, September 26, 2022.
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