{"id":71323,"date":"2024-06-12T13:43:47","date_gmt":"2024-06-12T13:43:47","guid":{"rendered":"https:\/\/news.talkwithrattan.com\/index.php\/2024\/06\/12\/long-covid-finally-gets-a-universal-definition\/"},"modified":"2024-06-12T13:43:47","modified_gmt":"2024-06-12T13:43:47","slug":"long-covid-finally-gets-a-universal-definition","status":"publish","type":"post","link":"https:\/\/news.talkwithrattan.com\/index.php\/2024\/06\/12\/long-covid-finally-gets-a-universal-definition\/","title":{"rendered":"Long COVID finally gets a universal definition"},"content":{"rendered":"<div style=\"text-align:center\"><\/div> \r\n<br><div data-component=\"video-embed\">\n\t\t\t\t\n\n\n\n\n<p>A sweeping new definition of long COVID could help affected people get recognition of their condition and improve diagnosis and treatment.<\/p>\n\n\n\n<p>The U.S. National Academies of Sciences, Engineering and Medicine announced the <a href=\"https:\/\/nap.nationalacademies.org\/catalog\/27768\/a-long-covid-definition-a-chronic-systemic-disease-state-with?utm_medium=email\" target=\"_blank\" rel=\"noopener\">definition for long COVID<\/a> June 11.<\/p>\n\n\n\n<p>Previous definitions of long COVID have been <a href=\"https:\/\/www.sciencenews.org\/article\/long-covid-definition-symptoms-treatment-coronavirus\">all over the map<\/a>, each with its own set of accepted symptoms, timelines and requirements for proof of infection (<em>SN: 7\/29\/22<\/em>).<\/p>\n\n\n\n<p>That lack of standardization \u201cleft many patients in the lurch without clear ability to be recognized for the condition that they had, with difficulty explaining to family and even to their caregivers,\u201d says Harvey Fineberg, a public health expert who chaired the committee that drafted the definition. \u201cWe heard from literally hundreds of people experiencing long COVID about the challenges that they had in being heard, in gaining access to care and obtaining the care they needed.\u201d<\/p>\n\n\n<aside class=\"sn-conversion rich-text rich-text--with-sidebar\">\n<style><![CDATA[\n.email-conversion {\n  border: 1px solid #ffcccb;\n  color: white;\n  margin-top: 50px;\n  background-image: url(\"\/wp-content\/themes\/sciencenews\/client\/src\/images\/cta-module@2x.jpg\");\n  padding: 20px;\n  clear: both;\n}\n\n]]><\/style>\n\n\n\n                        <style class=\"is-layout-flow 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unset);line-height:unset;margin:unset;padding:unset;border:unset;background:unset;&:hover, &:focus-visible {\n            border: unset;\n            background: unset;\n        }}.zephr-form-disabled-div{pointer-events:none;opacity:0.8}.zephr-form-relative-container{position:relative}.zephr-form-flex-container{display:flex}.zephr-form-input-inner-button{cursor:pointer;position:absolute;top:50%;transform:translateY(-50%);right:5px;padding:10px 5px}.zephr-form-input-inner-text{color:var(--zephr-color-text-main);font-size:var(--zf-subtext-fontSize);font-weight:bold;font-family:var(--zf-root-fontFamily)}\n]]><\/style>\n                        \n                        <style><![CDATA[.zephr-form-max-width.zephr-payment-form-max-width {\n    background-image: url(https:\/\/www.sciencenews.org\/wp-content\/themes\/sciencenews\/client\/src\/images\/cta-module@2x.jpg);\n    padding:20px;\n    max-width: 100%;\n}\n\n.zephr-form-custom-text > p {\n    display: none;\n}\n\nform.zephr-form-content {\n    opacity: .9;\n}\n\nlabel.zephr-form-checkbox-label {\n    font-size: 1.2rem;\n    font-weight: bolder;\n}\n\n.zephr-form-custom-text > h4 {\n    color: black !important;\n}\n\nbutton.zephr-form-button {\n    background: #d4441f !important;\n    font-weight: bold !important;\n    text-transform: uppercase !important;\n}\n\nlabel.zephr-payment-form-checkbox-label {\n    color: white;\n    font-size: 1.6rem;\n}\n\n.zephr-form-content {\n    background:#2f537f;\n    \n}\n\n.zephr-payment-form-custom-text {\n    margin-top: .2rem;\n}\n\n.zephr-payment-form-checkbox-label {\n    display: flex;\n    align-items: center;\n    font-family: var(--zephr-typography-body-font), var(--zephr-typography-body-fallbackFont);\n    color: white;\n    font-weight: bold;\n}]]><\/style>\n                        \n                        \n<\/aside>\n\n\n<p>More than 1,300 people <a href=\"https:\/\/www.nationalacademies.org\/documents\/embed\/link\/LF2255DA3DD1C41C0A42D3BEF0989ACAECE3053A6A9B\/file\/DD8E87E8161DD0ED2EA0625D300E9C2F72CC0AAE9038?noSaveAs=1\" target=\"_blank\" rel=\"noopener\">contributed to the definition<\/a>. The committee decided to adopt the patients\u2019 own term \u201clong COVID\u201d instead of more medical terms such as \u201cpost-acute sequelae of COVID-19\u201d that have also been used to describe the long-term condition.<\/p><p>Adoption of the name the patients advocated for gives validation to everyone with the condition who has been struggling, sometimes for years, to have their experience acknowledged, says Daria Oller, a physical therapist in New Jersey who developed long COVID in 2020. \u201cNow, people are trying to not use the term long COVID, and all of us, patients from the first wave, are fighting. We were ignored. That\u2019s ours. We named it.\u201d<\/p>\n\n\n\n<p>The committee chose to go with the name because it\u2019s simple, familiar and easy to communicate, Fineberg said during <a href=\"https:\/\/www.nationalacademies.org\/event\/42882_06-2024_report-release-webinar-a-long-covid-definition\" target=\"_blank\" rel=\"noopener\">a webinar<\/a> introducing the definition.\u00a0<\/p>\n\n\n\n<p>No one knows exactly how many people have long COVID, but a recent survey found that <a href=\"https:\/\/www.cdc.gov\/nchs\/covid19\/pulse\/long-covid.htm\" target=\"_blank\" rel=\"noopener\">more than 17 percent of adults<\/a> in the United States have experienced the condition. While the National Academies don\u2019t have regulatory or legal power to enforce adoption of the definition, the respected body of scientific experts\u2019 recommendations are often used in making regulatory decisions, determining medical and scientific policies and crafting laws.<\/p>\n\n\n\n<p>Here\u2019s what to know about the long COVID definition.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">What is long COVID?<\/h2>\n\n\n\n<p>It\u2019s a medical condition that belongs to a family of chronic conditions that kick in after infections with viruses, bacteria, fungi or parasites. That includes chronic health problems such as myalgic encephalomyelitis\/chronic fatigue syndrome (ME\/CFS) and Lyme-associated chronic illnesses.<\/p>\n\n\n\n<p>According to the National Academies\u2019 definition, long COVID is a medical condition that persists for at least three months after an infection with SARS-CoV-2, the coronavirus that causes COVID-19. Long COVID can affect any organ or system in the body. People may have any of more than 200 symptoms, which may include difficulty breathing, <a href=\"https:\/\/www.sciencenews.org\/article\/covid-brain-fog-coronavirus-immune-response-fatigue\">brain fog<\/a>, <a href=\"https:\/\/www.sciencenews.org\/article\/health-risks-persist-2-years-covid-19\">blood clots<\/a>, dizziness, extreme fatigue after exercising, loss of taste or smell, fast heart rate, diarrhea, constipation, <a href=\"https:\/\/www.sciencenews.org\/article\/coronavirus-covid-diabetes-fat-cells-blood-sugar\">diabetes<\/a> and autoimmune diseases such as lupus (<em>SN: 2\/2\/22<\/em>; <em>SN: 8\/21\/23<\/em>; <em>SN: 1\/4\/22<\/em>). Those symptoms can appear alone or in multiple combinations, can be continuous, get progressively worse or have bouts in which the patient gets better and then worse again.<\/p>\n\n\n\n<p>Chronic symptoms can affect people who originally had mild to severe COVID and can even strike people who didn\u2019t have any symptoms at all from their original infection. For that reason, the committee that crafted the Academies\u2019 definition says that people don\u2019t need to have had a positive COVID test to be diagnosed with long COVID.<\/p>\n\n\n<div class=\"wp-block-image  has-aligncenter\">\n<figure class=\"aligncenter size-large\"><figcaption class=\"wp-element-caption\"><span class=\"caption wp-caption-3140439\">Having a positive COVID test isn\u2019t necessary to get diagnosed with long COVID, the U.S. National Academies of Sciences, Engineering and Medicine say. A broad new definition of long COVID includes people who are experiencing chronic health issues but had asymptomatic infections, couldn\u2019t get COVID tests or had false negative results.<\/span><span class=\"credit wp-credit-3140439\">Fly View Productions\/Getty Images Plus<\/span><\/figcaption><\/figure><\/div>\n\n\n<p>The condition can strike adults and children and can start weeks or months after seeming recovery from the initial infection. The committee didn\u2019t put an upper limit on how long after getting the original illness that long COVID could start.<\/p>\n\n\n\n<p>There are no blood tests or biomarkers that doctors can use to reliably diagnose long COVID right now. The report calls for continued research to find such diagnostic tools.<\/p>\n\n\n\n\n\n<p>This definition follows a June 5 report that the Social Security Administration asked the National Academies to prepare. That report similarly found that <a href=\"https:\/\/nap.nationalacademies.org\/catalog\/27756\/long-term-health-effects-of-covid-19-disability-and-function\" target=\"_blank\" rel=\"noopener\">long COVID can have debilitating symptoms<\/a> that can affect people\u2019s physical function, quality of life and their ability to work or perform in school for years.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Why is the definition so broad?<\/h2>\n\n\n\n<p>The definition is \u201cintentionally inclusive,\u201d the committee says.<\/p>\n\n\n\n<p>\u201cWe wanted to be sure that long COVID was not regarded as a diagnosis of exclusion,\u201d says Fineberg, who is president of the Gordon and Betty Moore Foundation, based in Palo Alto, Calif. Everyone with lingering effects from a coronavirus infection should fall under the broad umbrella erected by the new definition. That means some people who have long-term health problems caused by a different infectious disease or other cause might be mistakenly diagnosed with long COVID, Fineberg admits.<\/p>\n\n\n\n<p>That big-tent approach is essential for health equity, says committee member Monica Verduzco-Gutierrez, a physical medicine and rehabilitation physician at the University of Texas Health Science Center at San Antonio. The committee wanted to make sure that people who don\u2019t have access to testing \u2014 because tests weren\u2019t available early on and free testing has ended now \u2014 or who got a false negative test or had asymptomatic infections could still be included in the definition.\u00a0<\/p>\n\n\n\n<p>\u201cI think they got it right in the sense that they didn\u2019t leave anybody out,\u201d says Ziyad Al-Aly, head of research at the VA Saint Louis Health Care System. Al-Aly was one of the independent experts who reviewed the report.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Will the definition change?<\/h2>\n\n\n\n<p>Yes. The report calls for revision of the definition in no more than three years and possibly sooner if new science warrants it.<\/p>\n\n\n\n<p>\u201cWe\u2019re very mindful that the definition is only good as far as science can take us at this time,\u201d Fineberg says.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">What will the definition mean for the health care for people with long COVID?<\/h2>\n\n\n\n<p>Having \u201cthe gravitas of the National Academy of Medicine behind\u201d the definition \u201cwill be seen by patients and patients advocates as legitimizing the illness which they have been complaining about,\u201d says Al-Aly. \u201cThere\u2019s a lot of gaslighting by physicians and by providers, and by the community [and] our society at large.\u201d<\/p>\n\n\n\n<p>Some people have dismissed the condition as being a mental health disorder, but plenty of research has established that there are widespread biological changes, Verduzco-Gutierrez says. The definition \u201cmakes it clear that long COVID is a physical health condition.\u201d<\/p>\n\n\n\n<p>Not requiring a positive test to be diagnosed with long COVID \u201cis huge\u201d for Oller, who has no proof that she was infected with SARS-CoV-2 in early 2020. \u201cWe couldn\u2019t get tested. There were long lines, and you needed symptoms that I didn\u2019t have.\u201d<\/p>\n\n\n\n<p>Before COVID, Oller was a runner and dancer. After, she had difficulty breathing and pains in her chest, which she now thinks may have been caused by microclots in her lungs. She\u2019s had a battery of health problems that have persisted. Though many symptoms have improved, they haven\u2019t all gone away, and Oller has accepted that she may be dealing some unwanted aftereffects of COVID-19 for life. Early on, she had no name for what she was experiencing and encountered much skepticism that anything was actually wrong with her, even from other medical professionals.<\/p>\n\n\n\n<p>Oller is a founding member of <a href=\"https:\/\/longcovid.physio\/\" target=\"_blank\" rel=\"noopener\">long COVID Physio<\/a>, an international peer group of people with long COVID and their allies. She was not involved in the National Academies\u2019 report but welcomes the broad definition.<\/p>\n\n\n\n<p>It will be something patients can take to their doctors to bolster their claims, Oller says. She understands some of the difficulties clinicians have with diagnosing long COVID. \u201cIt\u2019s hard because it challenges a lot of our biases,\u201d she says. \u201cExercise makes us worse, trying harder makes us worse. \u2026 It\u2019s easier to blame the patient and be like, \u2018Oh, you\u2019re not trying. You\u2019re lazy. You just want to get on disability. It\u2019s in your head.\u2019 It\u2019s easier to just send them on that route than to read through all the literature.\u201d<\/p>\n\n\n\n<p>Over time, Oller says, the definition may be refined to include subtypes of long COVID, much the way cancer is an overarching definition of runaway cell growth but is divided by where the cancer occurs and the mutations that cause it. But for now, she says, starting out broad will allow people whose symptoms don\u2019t \u201cfit into a nice little package\u201d to have their condition recognized and acknowledged.<\/p>\n\n\n\n\t\t\t<\/div>\r\n<br>\r\n<br><a href=\"https:\/\/www.sciencenews.org\/article\/long-covid-universal-definition\">Source link <\/a>","protected":false},"excerpt":{"rendered":"<p>A sweeping new definition of long COVID could help affected people get recognition of their condition and improve diagnosis and treatment. The U.S. National Academies of Sciences, Engineering and Medicine announced the definition for long COVID June 11. Previous definitions of long COVID have been all over the map, each with its own set of [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":71324,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"tdm_status":"","tdm_grid_status":"","fifu_image_url":"https:\/\/i0.wp.com\/www.sciencenews.org\/wp-content\/uploads\/2024\/06\/061124_ts_longcovid-def_inline.jpg?resize=594%2C450&ssl=1","fifu_image_alt":"","footnotes":""},"categories":[606],"tags":[2120,729,6828,1404,3592],"amp_enabled":true,"_links":{"self":[{"href":"https:\/\/news.talkwithrattan.com\/index.php\/wp-json\/wp\/v2\/posts\/71323"}],"collection":[{"href":"https:\/\/news.talkwithrattan.com\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/news.talkwithrattan.com\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/news.talkwithrattan.com\/index.php\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/news.talkwithrattan.com\/index.php\/wp-json\/wp\/v2\/comments?post=71323"}],"version-history":[{"count":1,"href":"https:\/\/news.talkwithrattan.com\/index.php\/wp-json\/wp\/v2\/posts\/71323\/revisions"}],"predecessor-version":[{"id":71325,"href":"https:\/\/news.talkwithrattan.com\/index.php\/wp-json\/wp\/v2\/posts\/71323\/revisions\/71325"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/news.talkwithrattan.com\/index.php\/wp-json\/wp\/v2\/media\/71324"}],"wp:attachment":[{"href":"https:\/\/news.talkwithrattan.com\/index.php\/wp-json\/wp\/v2\/media?parent=71323"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/news.talkwithrattan.com\/index.php\/wp-json\/wp\/v2\/categories?post=71323"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/news.talkwithrattan.com\/index.php\/wp-json\/wp\/v2\/tags?post=71323"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}