#MEAction Calls for ME & Long COVID to be Part of COVID-19 Task Force

#MEAction and three Long COVID organizations published a statement today urging Congress to support bipartisan legislation to establish a national task force to investigate the COVID-19 outbreak. Our organizations have also signed onto Marked By Covid’s open letter to Congress calling for the bill’s passage. 

Together, we are urging Congress to hold our federal health and research agencies accountable for their abject failure to be prepared for the Long COVID and ME/CFS crisis, and for their inadequate response to protecting and caring for Americans with these conditions. 

#MEAction worked in collaboration with Long COVID Justice, Patient-Led Research Collaborative and Strategies for High Impact to publish our endorsement for the bill. Last month, our four organizations met with Senator Kirsten Gillibrand’s (D-NY) office to discuss the legislation she had recently introduced to establish the task force. We impressed upon her office that a key component of the task force must be to investigate the government’s preparedness and response to Long COVID and associated conditions, including ME/CFS.

“The problem isn’t that Long COVID is new,” said Ben HsuBorger, #MEAction U.S. Advocacy Director. “The problem is that such illnesses have been ignored and stigmatized for decades.”

"ME advocates have tried for decades to change this situation by directly engaging the agencies. But we have found ourselves going in circles with simple problems taking years to solve and key challenges never being addressed.”

At the meeting with Gillibrand’s office, ME advocate, Mary Dimmock, shared her family’s heartbreaking story with ME. Her son developed ME in 2010 following an infection picked up backpacking through Asia, and has been disabled and unable to work since, and bedbound at times. For years, his wife supported them and enjoyed an active lifestyle until she contracted COVID-19 in March, 2020, and became profoundly disabled with Long COVID and ME. She has been unable to work for the past three years, and is now sometimes so ill that she only gets out of bed to use the bathroom.

“People with ME have been abandoned with few if any clinical care options and no chance of recovering and getting back to work,” Mary told Gillibrand’s staffers during the meeting. “ME advocates have tried for decades to change this situation by directly engaging the agencies. But we have found ourselves going in circles with simple problems taking years to solve and key challenges never being addressed.” 

“The key lesson learned from those decades is that if we want meaningful progress in addressing such a complex, devastating illness on a timescale that matters to patients, we need a clear mandate from Congress for action,” Mary said.  

JOIN US in calling for Congress to establish a COVID-19 task force. We need a full and transparent investigation of the U.S. government’s Covid response. Send a letter to your Senator urging their support using the button below.

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