Press Contact: #MEAction: [email protected]
Patient & Expert Voices Must Be Heard: Advocates Urge Administration to Reinstate Long COVID Advisory Committee
#MEAction and the Patient-Led Research Collaborative – leading organizations advocating for people with Long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – delivered a letter to HHS Secretary, Robert F. Kennedy, Jr, this past week, calling for him to reinstate the Long COVID Advisory Committee, which was terminated under a recent executive order.
“This decision undermines efforts to address a public health crisis of chronic disease affecting tens of millions of Americans, and silences critical voices with lived experience and scientific expertise,” said #MEAction Executive Director, Laurie Jones.
HHS Secretary Kennedy made a commitment to prioritize Long COVID at his confirmation hearing, and we are calling on him to honor that commitment by reinstating the advisory committee with its previously selected members — individuals with essential expertise and firsthand experience in navigating Long COVID.
“Long COVID affects at least 20 million Americans, with nearly half meeting the criteria for ME/CFS — one of the most underfunded and under-researched diseases in the country,” the letter states. “The economic toll is staggering, with estimates showing at least $3.7 trillion in lost productivity, reduced earnings, and increased medical costs.”
We are urging immediate action to reinstate the Long COVID advisory committee and ensure those with lived experience have a seat at the table. The health and economic well-being of tens of millions of Americans depend on continued research, support, and policy action.
About Patient-Led Research Collaborative & #MEAction
#MEAction is a grassroots advocacy organization advocating for people with ME/CFS and Long COVID, working to drive research, medical education and policy change.
The Patient-Led Research Collaborative is a research and advocacy driven organization founded by people with Long COVID, dedicated to advancing scientific understanding and solutions for Long COVID and associated conditions.
