Success gives hope to scientists and advocates who managed to get millions of dollars in grants restored.<\/p>\n\n\n\n
Long COVID advocates and researchers in the United States have done the extraordinary. After a bruising battle, they managed to revive some of the\u00a0research grants cancelled by the administration of President Donald Trump<\/a>\u00a0\u2015 a rare victory for science as Trump\u2019s team slashes funding and\u00a0fires federal scientific staff<\/a>.<\/p>\n\n\n\n The crisis began in late March, when the US National Institutes of Health (NIH)<\/a> terminated the funding for dozens of long-COVID projects. Activists and researchers began a dogged advocacy campaign, including an eleventh-hour effort to sway a sympathetic member of Congress to intervene, according to an employee of the US Department of Health and Human Services (HHS), which oversees the NIH. (The employee requested anonymity because they were not authorized to speak to the press.) Within days, the cuts had been reversed.<\/p>\n\n\n\n But the administration\u2019s termination of an array of infectious-diseases research suggests a rocky path ahead for long-COVID research. Now activists and scientists are both anxious and hopeful as they brace themselves for the potential of future cuts to federal support.<\/p>\n\n\n\n \u201cThe long COVID patient community is reeling and flabbergasted by what they\u2019re seeing,\u201d says Emily Taylor, president of the Solve ME\/CFS Initiative and based in Glendale, California. \u201cWe\u2019ve been telling congresspeople, \u2018Stop cutting, first thing. Stop hurting us. Stop the pain.\u2019\u201d<\/p>\n\n\n\n The HHS, which includes the NIH and other health agencies, did not respond to a request for comment.<\/p>\n\n\n\n Over the past two months, US President Donald Trump\u2019s new administration has cancelled or delayed thousands of biomedical research grants, including those for research on COVID-19<\/a>.<\/p>\n\n\n\n When asked about the COVID-19 cuts, a spokesperson for HHS told Nature<\/em> on 26 March, \u201cHHS will no longer waste billions of taxpayer dollars responding to a non-existent pandemic that Americans moved on from years ago.\u201d<\/p>\n\n\n\n That response appalled some long COVID advocates and researchers. \u201cIt\u2019s totally shocking and really incorrect,\u201d says Serena Spudich, an infectious disease neuroscientist at the Yale School of Medicine in New Haven, Connecticut. \u201cThe aftermath of the COVID pandemic is absolutely affecting millions of people, the economy, people\u2019s ability to work and attend school.\u201d A 2024 study<\/a> estimated that 11 million people in the United States currently have long COVID, and that the condition costs the country more than $152.6 billion in lost work hours each year.<\/p>\n\n\n\n HHS is run by longtime anti-vaccine advocate Robert F. Kennedy Jr<\/a>, who said during his confirmation hearing on 29 January that he\u2019d commit to funding long COVID research. That gave Ian Simon, who was at the time the director of HHS\u2019s Office of Long COVID Research and Practice, a \u201cglimmer of hope\u201d, he says, because it seemed \u201ca full-throated endorsement of serious government action.\u201d But the grant cancellations \u201cmake me question what a full-throated endorsement in front of Congress means these days\u201d.Long COVID still has no cure \u2014 so these patients are turning to research<\/a><\/p>\n\n\n\n Under Kennedy, the HHS shuttered its long COVID office and laid off Simon and another employee in the office. An executive order signed by Trump<\/a> dismantled the only federal advisory committee on long COVID, and the US Department of Labor stripped mention of long COVID from its websites.<\/p>\n\n\n\n The NIH cut not only research on long COVID but also other work that could affect people with the condition. For example, the NIH has terminated several disability studies, says David Putrino, a physical therapist and neuroscientist at the Icahn School of Medicine at Mount Sinai in New York City. Many people with severe long COVID live with disabilities.<\/p>\n\n\n\n Despite this, some advocates had hoped that a US$1.8 billion NIH long COVID research initiative, called RECOVER<\/a>, might be safe because Congress had funded the programme directly in 2020.<\/p>\n\n\n\n Then, in late March, the NIH cancelled a wave of RECOVER grants. \u201cWe were completely shocked,\u201d says Megan Fitzgerald, a neuroscientist in Philadelphia, Pennsylvania who has long COVID and works with the advocacy group Patient-Led Research Collaborative<\/a>. \u201cAnd that\u2019s when we started mobilizing.\u201d<\/p>\n\n\n\n Fitzgerald\u2019s detective work revealed dozens of cancelled projects, most of them studies of either the biology underlying long COVID, or of long COVID in children. The loss of the paediatric studies would have been particularly painful, says Fitzgerald, because the study of long COVID in children has lagged research in adults<\/a>.<\/p>\n\n\n\n The biology studies included a project on dysautonomia, a condition sometimes seen in people with long COVID that affects the body\u2019s ability to control heart rate and blood pressure. Another terminated project aimed to characterize antibodies made against the body\u2019s own proteins. Such \u201cautoantibodies\u201d are thought to contribute to some cases of long COVID<\/a> and could become targets for medicines to treat the condition.<\/p>\n","protected":false},"excerpt":{"rendered":" Heidi Ledford\u00a0&\u00a0Max Kozlov Success gives hope to scientists and advocates who managed to get millions of dollars in grants restored. Long COVID advocates and researchers in the United States have […]<\/p>\n","protected":false},"author":2,"featured_media":11674,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[22,36,129,289,445,446],"tags":[],"class_list":["post-11671","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-antibody","category-autoantibodies","category-dysautonomia","category-long-haul-disease","category-policies-politics","category-policy"],"_links":{"self":[{"href":"https:\/\/cov19longhaulfoundation.org\/index.php?rest_route=\/wp\/v2\/posts\/11671","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/cov19longhaulfoundation.org\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/cov19longhaulfoundation.org\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/cov19longhaulfoundation.org\/index.php?rest_route=\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/cov19longhaulfoundation.org\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=11671"}],"version-history":[{"count":2,"href":"https:\/\/cov19longhaulfoundation.org\/index.php?rest_route=\/wp\/v2\/posts\/11671\/revisions"}],"predecessor-version":[{"id":11673,"href":"https:\/\/cov19longhaulfoundation.org\/index.php?rest_route=\/wp\/v2\/posts\/11671\/revisions\/11673"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/cov19longhaulfoundation.org\/index.php?rest_route=\/wp\/v2\/media\/11674"}],"wp:attachment":[{"href":"https:\/\/cov19longhaulfoundation.org\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=11671"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/cov19longhaulfoundation.org\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=11671"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/cov19longhaulfoundation.org\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=11671"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}Long COVID\u2019s reach<\/h2>\n\n\n\n
Closed doors<\/h2>\n\n\n\n
Wasted investment<\/h2>\n\n\n\n