“Long-haulers” are no longer just a job description for truckers.
This term now refers to the increasing number of people who carried Covid-19 and had symptoms for more than 100 days – even though tests did not leave any virus in the body. Covid-19 “long-haulers” continue to struggle with symptomatic symptoms, often only, in the shadow of this devastating disease. By the least escape she has continued to wrestle. It feels like a betrayal.
Reported symptoms include headache, concentration problems and extreme fatigue. In one survey of 1,500 people with confirmed and suspected Covid-19, conducted by a Facebook community of long-distance runners, more than half reported debilitating symptoms for more than three months. A recent CDC report found that 35% of respondents who tested positive for Covid-19 and symptoms did not feel like they were returning to normal 2-3 weeks after testing. Although Covid-19 is considered the most dangerous for elderly people when immunocompromised, the study found that one in five respondents aged 18-34, without prior chronic medical conditions, said they had not fully recovered. This is especially true because much of the current prevalence of new cases in the U.S. is among younger people.
In fact, it is not uncommon for patients to develop chronic, debilitating symptoms after infection by a wide variety of viruses, bacteria and other microorganisms. The phenomenon is called “post-infectious fatigue syndrome”. It can follow subsequent infections, such as mono- or Lyme disease, as well as emerging and more serious diseases caused by Ebola, SARS and West Nile Virus.
The symptoms of post-covid long haulers are indistinguishable from those typical of the disease called myalgic encephalomyelitis / chronic fatigue syndrome (ME / CFS). Indeed, in many people with ME / CFS, the disease began after an infection-like illness or well-documented infection. The U.S. National Academies of Sciences, Engineering and Medicine and the Centers for Disease Control and Prevention estimate that as many as 2.5m Americans suffered from ME / CFS before the Covid-19 pandemic, generating direct and indirect costs of $ 17-24b annually. The pandemic could drive these numbers higher.
Dr Anthony Fauci, head of the Federal Government’s Infectious Diseases Institute, acknowledged a possible link between Covid-19 and ME / CFS: “Even after you delete the virus, there are post-viral symptoms,” he said. he in an interview with Medscape. “And it’s amazing how many people have a post-viral syndrome that is strikingly similar to myalgic encephalomyelitis / chronic fatigue syndrome. They just do not return to normal energy or normal sense of good health. ”
We agree with Dr Fauci: Getting the pandemic is apparently the top priority, but we should also not ignore the long-term impact of Covid-19. The threat of serious illness and death may be behind them, and the virus may no longer be detectable in their bodies, but some people with Covid-19 remain seriously awkward. We need to figure out why, and try to fix it.
A study of Covid-19 long haulers may also shed light on ME / CFS and post-infectious fatigue syndromes after infections other than COVID-19. One major obstacle to understanding the long-term effects of Covid-19 is the lack of available data. The scientific community – public and private – needs to gather as much data as possible while we are still in the early stages of this Covid-19 era.
Solve ME, a national organization dedicated to ME / CFS, recently launched the You + ME Registry and Biobank, and a mentoring app, to allow people to report their symptoms, medical information (such as treatments), activities and life events, and to deliver blood samples which can help researchers understand the link between Covid-19 and ME / CFS. This database can be one source of the data needed to understand the long-term requirements, and others with ME / CFS.
There are currently bills in both houses of Congress to increase funding for the ME / CFS study. We need the federal government and the life sciences sector to support increased research on ME / CFS, including the likely link with COVID-19. We need to understand why some people just do not recover. The only way we can come up with answers is to make a concerted and collective effort that unites patients, caregivers, physicians, researchers in academia and industry, policymakers, and philanthropy.
Let us now study the long traders. This study could improve the care for the millions who are infected by the Covid-19 coronavirus – as well as those who already have ME / CFS.
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Oved Amitay is Chairman and CEO of Solve ME, a private charity dedicated to improving the care of people with ME / CFS
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Anthony L Komaroff is Professor of Medicine at Harvard Medical School and Senior Physician at Brigham & Women’s Hospital in Boston
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