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Long-haul is no longer just a job description for truckers.
This term now refers to the growing number of people who have contracted Covid-19 and continued to show symptoms for more than 100 days – even though tests do not reveal any viruses in the body. Covid-19 “long-haul” people continue to struggle with debilitating symptoms, often alone, in the shadow of this devastating disease. Having escaped the worst, they nevertheless continue to struggle. It sounds like betrayal.
Symptoms reported include headache, difficulty concentrating, and extreme fatigue. In a survey of 1,500 people with confirmed or suspected Covid-19, conducted by a long-haul Facebook community, more than half reported debilitating symptoms for more than three months. A recent report from the CDC found that 35% of respondents who tested positive for Covid-19 and exhibited symptoms did not feel returned to normal 2-3 weeks after testing. Although Covid-19 is considered the most dangerous for the elderly or immunocompromised, the study noted that one in five respondents aged 18 to 34, with no previous chronic health condition, said they had not fully recovered. . This is of particular concern because much of the current spread of new cases in the United States is among young people.
In fact, it is not uncommon for patients to develop chronic and debilitating symptoms after infection with a wide variety of viruses, bacteria, and other microorganisms. The phenomenon is called “post-infectious fatigue syndrome”. It can follow common infections, such as mono or Lyme disease, or emerging and more serious illnesses caused by Ebola, SARS and West Nile virus.
Symptoms of long haul post-Covid may not be distinguished from those typical of the condition called myalgic encephalomyelitis / chronic fatigue syndrome (ME / CFS). This is because in many people with ME / CFS, the disease began after an infectious-type illness or a well-documented infection. The United States National Academies of Science, Engineering and Medicine and the Centers for Disease Control and Prevention estimate that up to 2.5 million Americans suffered from ME / CFS before the Covid pandemic. 19, generating direct and indirect costs of 17 to 24 billion dollars per year. The pandemic could push these numbers up.
Dr Anthony Fauci, director of the federal government’s Institute of Infectious Diseases, acknowledged a possible link between Covid-19 and ME / CFS: “Even after clearing the virus, there are postviral symptoms,” he said. he said in an interview with Medscape. “And it’s amazing the number of people with postviral syndrome which is very similar to myalgic encephalomyelitis / chronic fatigue syndrome. They just don’t regain normal energy or a normal feeling of good health.
We agree with Dr Fauci: bringing the pandemic under control is obviously the top priority, but we must not ignore the long-term impact of Covid-19 either. 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 severely incapable. We need to understand why and try to fix it.
A study on Covid-19 long carriers could also shed light on ME / CFS and post-infectious fatigue syndromes following infections other than COVID-19. A 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 collect 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, as well as a companion app, to allow people to report symptoms, medical information (such as treatments) , their activities and life events, and to provide blood samples that can help researchers understand the link between Covid-19 and ME / CFS. This database can be a source of the data needed to understand long haul, and others with ME / CFS.
There are currently bills in both houses of Congress to increase funding for the EM / CFS study. We need the federal government and the life science industry to support increased research on ME / CFS, including the likely link to COVID-19. We need to understand why some people just don’t recover. The only way to come up with answers is to make a concerted and collective effort that unites patients, caregivers, doctors, academic and industrial researchers, policy makers and philanthropists.
Now let’s take a look at long haul. This research could improve care for the millions of people infected with the Covid-19 coronavirus – as well as those who already have ME / CFS.
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Oved Amitay is President and CEO of Solve ME, a private charitable foundation dedicated to improving the care of people with ME / CFS disease
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Anthony L. Komaroff is Professor of Medicine at Harvard Medical School and Senior Physician at Brigham & Women’s Hospital, Boston
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