A word from the Long COVID Initiative Faculty Director, Dr. Francesca Beaudoin, MD, MS, PhD, Interim Chair of the Department of Epidemiology; Associate Professor of Emergency Medicine and Health Services, Policy and Practice, Brown University School of Public Health:
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"The focus on Long COVID has also called attention to other chronic health conditions, some of which are still not well understood (e.g., CFS). In the case of Long COVID, there is no clear diagnostic test such as blood work or an imaging test. This parallels other types of conditions that are based on a "clinical diagnosis" or a "diagnosis of exclusion." Navigating these challenges in diagnosis can be incredibly challenging for both patients and physicians. Long COVID reminds us that we cannot have a one size fits all approach to medical care and particular attention may be needed in chronic health conditions that do not have a clear diagnostic pathway. Things that may reduce roadblocks are having an established primary care provider (PCP), having consistent visits with the same PCP, keeping symptom diaries, and having an advocate such as a friend or family member present at healthcare visits. Additional work is needed to better help those with Long COVID and other chronic health conditions navigate the medical system."
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One of Long COVID’s worst symptoms is also its most misunderstood
"Of long COVID’s many possible symptoms, brain fog “is by far one of the most disabling and destructive,” Emma Ladds, a primary-care specialist from the University of Oxford, told me. It’s also among the most misunderstood. It wasn’t even included in the list of possible COVID symptoms when the coronavirus pandemic first began. But 20 to 30 percent of patients report brain fog three months after their initial infection, as do 65 to 85 percent of the long-haulers who stay sick for much longer. It can afflict people who were never ill enough to need a ventilator—or any hospital care. And it can affect young people in the prime of their mental lives."
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Understanding myalgic encephalomyelitis: ME and Long COVID have overlapping presentation
"The recent emergence of a chronic post-infectious condition, called Long Covid, overlaps considerably with ME/CFS in immunological, mitochondrial, and neurological dysfunctions. These similarities have resulted in increased interest and acceptance of ME/CFS as a disease and may stimulate research, the development of a diagnostic test, and pharmacotherapeutic interventions in ME/CFS that may be applied to Long Covid."
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At least 17 million people in the WHO European Region experienced Long COVID in the first two years of the pandemic; millions may have to live with it for years to come
"New modelling conducted for WHO/Europe by the Institute for Health Metrics and Evaluation (IHME) at the University of Washington’s School of Medicine in the United States shows that in the first two years of the pandemic, at least 17 million individuals across the 53 Member States of the WHO European Region may have experienced post COVID-19 condition, also known as long COVID. In other words, an estimated 17 million people met the WHO criteria of a new case of long COVID with symptom duration of at least three months in 2020 and 2021...
'IHME’s research shows that nearly 145 million people around the world in the first two years of the pandemic suffered from any of the three symptom clusters of long COVID: fatigue with bodily pain and mood swings, cognitive problems, and shortness of breath.'”
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Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID
"The Long COVID Initiative spoke with the Director of Scientific and Medical Outreach at #MEAction, Jamie Seltzer, who said:
'Several studies show that about half of people with the Long COVID label meet the diagnostic criteria for ME/CFS. And unfortunately, just because you escaped Long COVID for your first and second [COVID-19] exposure does not mean you will necessarily avoid it on your third infection. ME/CFS is most common in patients between the ages of 40 and 60, however can impact people of all ages much like Long COVID. Similarly, both conditions seem to impact women more than men.'”
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LISTEN stands for Listen to Immune, Symptom and Treatment Experiences Now.
The purpose of this study is to understand Long Covid, post-vaccine injuries and the corresponding immune responses by collecting information about symptoms and medical history from participants who are members of a patient community, and by collecting blood and saliva samples from some participants.
For more information including eligibility requirements, visit the Yale LISTEN Study website.
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