Why is the medical community still ignoring the novel coronavirus for so long?

In 2017, I started feeling terrible after doing physical activity. After years of working as a fitness professional, I suddenly found that regular training left me debilitated, unfocused, and sometimes lethargic to the point of being unable to move. When I talked to my doctor, he said it was impossible.

Not only is it possible, the phenomenon has been named since at least 1988. That year, Dr. Anthony Komarov of Harvard Medical School identified “post-exertional malaise” (PEM) as a symptom of myalgic encephalomyelitis, also known as chronic fatigue syndrome. (ME/CFS) — A complex chronic disease that can occur following viral infection. In 2003, Health Canada recognized his PEM as a hallmark of his ME/CFS. Yet despite this decades of recognition, medicine has largely ignored his PEM, and there is no effective treatment.

This lack of knowledge is now a public health crisis thanks to the COVID-19 pandemic. About half of people with long-term COVID-19 meet criteria for ME/CFS, and the majority of long-haul carriers experience PEM, among others. Up to 4 million people with COVID-19 have lost their long-term jobs due to PEM’s adverse reactions to physical, emotional and cognitive stress.

Patient experiences with PEM are still often ignored, in part because PEM runs counter to most health understandings. Exercise improves many symptoms. However, in patients with PEM, exercise can lead to cellular dysfunction, impaired oxygen extraction, immune abnormalities, and inflammation of the brain and spine. Exercise-based therapy has long-term or permanent damage to the health of some patients.

The fact that PEM is rarely found in other diseases, and the fact that it calls into question existing medical hypotheses, should make it a subject of strong scientific interest.

Rather than building on 40 years of knowledge about PEM and ME/CFS, much of the alarmingly slow research on long-term novel coronavirus repeats past mistakes. Most recently, the National Institutes of Health’s $500 million RECOVER study was criticized for focusing on exercise as a potential treatment for long-term COVID-19. Expecting exercise to treat long-term COVID-19 not only ignores the harm it can do to the majority of patients, but also the prominent, And you’re ignoring one of the least understood features.

Compounding the problem is that, despite $1 billion in federal funding, the NIH has failed to initiate a long-term study of the novel coronavirus, and it will be years before the results are available. You can’t get it. A search of the NIH’s clinical trials database, which includes registered studies in all 50 states and 221 countries, found only 11 active studies of long-term novel coronavirus treatments. Three of these were exercise tests and one applied cognitive-behavioral therapy. Currently recruiting research includes treatment modalities such as symptom self-management and mindfulness through meditation from the Mayo Clinic. His only PEM-focused research in particular.

Since “long-lasting novel coronavirus” is likely to include a range of symptoms caused by novel coronavirus infection, some patients may benefit from exercise and meditation. But just as no one expects yoga to cure systemic lupus erythematosus, which can be activated by viruses, these interventions cannot replace meaningful treatments for biomedical dysfunction.

In the United States alone, millions of people have lost their entire lives to prolonged COVID-19, ME/CFS, and PEM restrictions. Children are missing important years of education. Working-age adults are moving away from careers and are in financial crisis. And the elderly find themselves rapidly declining physically and mentally. For those of us who wake up every day with precarious health and sapped energy, every hour counts. It is devastating to see resources wasted on ineffective and potentially harmful exercise research.

Longtime coronavirus researchers will find a strong foundation of previous research to build upon. NIH is supporting long-term novel coronavirus research so that researchers can share knowledge, including existing research on PEM and ME/CFS, and what we know about unusual and highly adverse reactions to exertion in some patients. need to be adjusted.

It’s been six years since my doctor denied a connection between physical activity and worsening symptoms. By 2020, any light activity would cause me to lie on my back on the floor, and the pain and fatigue could last for weeks at a time. I am not sure if I would have been less ill if I had received more informed treatment. I know my life would have been easier if doctors had been able to identify her PEM sooner and help mitigate its effects. And if medicine had taken PEM seriously over the past 40 years, millions of people across the country with long-term COVID-19 illnesses would be better treated. I know deaf too.

Government officials have mobilized resources in record time as they see their lives and livelihoods endangered by COVID-19. Many of us are still sick, and many more who will get sick each time we get COVID-19 need that same care and urgency.

V. Jo Hsu is an Assistant Professor of Health Inequality Studies at the University of Texas at Austin and a person living with ME/CFS. They are the authors of House of the Constellations: Trans and Queer Asian-American Rhetoric and Public Voice Fellows of the Editorial Project.

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