{"id":33985,"date":"2022-03-22T23:23:17","date_gmt":"2022-03-22T23:23:17","guid":{"rendered":"https:\/\/solvecfs.org\/?p=33985"},"modified":"2023-02-01T23:35:00","modified_gmt":"2023-02-01T23:35:00","slug":"bloomberg-law-exclusive-reports-solve-m-e-funded-data-on-the-devastating-impact-of-long-covid","status":"publish","type":"post","link":"https:\/\/solvecfs.org\/bloomberg-law-exclusive-reports-solve-m-e-funded-data-on-the-devastating-impact-of-long-covid\/","title":{"rendered":"Bloomberg Law exclusive reports Solve M.E.-funded data on the devastating impact of Long Covid"},"content":{"rendered":"<p><span style=\"font-weight: 400;\">The need for official data from the Centers for Disease Control (CDC) is crucial to the study of Long Covid, as well as the effort to fund the Long Covid research. Today, <\/span><a href=\"https:\/\/news.bloomberglaw.com\/health-law-and-business\/official-u-s-long-covid-19-data-two-years-away-hurts-research\"><b><i>Bloomberg Law<\/i><\/b><b> reported<\/b><\/a><span style=\"font-weight: 400;\"> on the expected two-year delay in the public availability of that data, and how private research is filling the knowledge gap.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">In an exclusive report, \u201c<\/span><a href=\"https:\/\/news.bloomberglaw.com\/health-law-and-business\/official-u-s-long-covid-19-data-two-years-away-hurts-research\"><b>Official U.S. Long Covid-19 Data Two Years Away, Hurts Research<\/b><\/a><span style=\"font-weight: 400;\">,\u201d <\/span><i><span style=\"font-weight: 400;\">Bloomberg Law<\/span><\/i><span style=\"font-weight: 400;\"> shared data from an upcoming <\/span><a href=\"https:\/\/solvecfs.org\/the-solve-long-covid-initiative\/\"><b>Solve Long Covid Initiative<\/b><\/a><span style=\"font-weight: 400;\"> white paper that estimates<\/span><b> 21.3 million*<\/b><span style=\"font-weight: 400;\"> adults have Long Covid.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">In the coming weeks, more comprehensive data from our white paper will be released, including state-by-state figures on Long Covid prevalence and its economic impact.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">In January, Representatives Ayanna Pressley and Don Beyer authored a<\/span> <b>letter<\/b><span style=\"font-weight: 400;\"> to CDC Director Dr. Rochelle Walenksy asking the CDC to make Long Covid demographic data publicly available. The letter specifically called for an official estimate of how many people experience Long Covid and calls for the disaggregated demographic data on the prevalence of Long Covid to be shared with Congress.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">The advocates spearheading the effort included the <\/span><b>Long COVID Alliance<\/b><span style=\"font-weight: 400;\"> (co-founded by Solve M.E.) and the <\/span><b>COVID-19 Longhauler Advocacy Project<\/b><span style=\"font-weight: 400;\">. Solve M.E. <\/span><a href=\"https:\/\/go.solvecfs.org\/e\/192652\/-Long-COVID-to-CDC-1-25-22-pdf\/2fdv47\/233663544?h=8bwmJqijEBjmYqdSjKOEWT6KqdQWGO8OaNMURQLYIuE\"><b>authored a letter of support<\/b><\/a><span style=\"font-weight: 400;\">, voicing our agreement with the request.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">CDC representatives later told Rep. Beyer that the CDC \u201cwould not internally have a dataset from which they could publicly post disaggregated data for two years.\u201d<\/span><\/p>\n<p><span style=\"font-weight: 400;\">In the absence of official CDC Long Covid data, the Solve Long Covid Initiative has used mathematical models, population and serology data, patient-led research, and the published natural histories of other post-infection illnesses, specifically myalgic encephalomyelitis\/chronic fatigue syndrome (ME\/CFS) to estimate prevalence and impact.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">As Solve M.E. Vice President of Advocacy and Engagement Emily Taylor <\/span><a href=\"https:\/\/solvecfs.org\/solve-m-e-joins-lawmakers-in-asking-cdc-to-make-long-covid-data-publicly-available\/\"><b>noted<\/b><\/a><span style=\"font-weight: 400;\">, <\/span><span style=\"font-weight: 400;\">\u201cHaving access to this data is key in supporting communities that are more vulnerable to Long Covid and other infection-associated diseases, like ME\/CFS. We have to understand the scope of this public health crisis to respond in a way that ensures no patient is left behind. This data will help us advocate for further research, educate policymakers, and catalyze real change for those with Long Covid and post-infection diseases.\u201d<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Stay tuned for more information on our upcoming white paper. Please click <\/span><a href=\"https:\/\/solvecfs.org\/the-solve-long-covid-initiative\/\"><b>here<\/b><\/a><span style=\"font-weight: 400;\"> for more on our <\/span><b>Long Covid Initiative<\/b><span style=\"font-weight: 400;\">.<\/span><span style=\"font-weight: 400;\"><br \/>\n<\/span><\/p>\n<p><i><span style=\"font-weight: 400;\">*This data has been updated since publication of the Bloomberg Law article.<\/span><\/i><\/p>\n","protected":false},"excerpt":{"rendered":"<p>The need for official data from the Centers for Disease Control (CDC) is crucial to the study of Long Covid, as well as the effort to fund the Long Covid [&hellip;]<\/p>\n","protected":false},"author":5,"featured_media":31892,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"sfsi_plus_gutenberg_text_before_share":"","sfsi_plus_gutenberg_show_text_before_share":"","sfsi_plus_gutenberg_icon_type":"","sfsi_plus_gutenberg_icon_alignemt":"","sfsi_plus_gutenburg_max_per_row":"","footnotes":""},"categories":[176,41],"tags":[603,601,118,224,530,602,600],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v22.5 - 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