Long COVID patients: Ayanna Pressley urges CDC to report data on long haulers

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Congresswoman Ayanna Pressley is pushing the CDC to reveal how many Americans are suffering from Long COVID as millions reportedly face lingering coronavirus symptoms.

Pressley on Tuesday wrote to the CDC as Boston-area researchers recruit long haulers for studies on the debilitating condition. Many people who contracted COVID continue to experience symptoms, such as trouble concentrating and abnormally strong fatigue.

“We write to urge the CDC to publicly report findings on the prevalence of Long COVID, including disaggregated demographic data,” Pressley and Virginia Rep. Don Beyer wrote to CDC Director Rochelle Walensky. “This data will help direct Congressional action to support those with Long COVID along with their families and communities.”

People living with Long COVID may experience a combination of symptoms, ranging from fatigue and brain fog to muscle pain and diarrhea to difficulty breathing and heart palpitations. Because of the debilitating effects of Long COVID, HHS and the Department of Justice have recognized the condition as a disability.

“An official estimate of how many people experience Long COVID is necessary to ensure resources are available to support their recovery,” Pressley wrote to the CDC.

The American Academy of Physical Medicine and Rehabilitation estimates that more than 20 million Americans are suffering from Long COVID, which is scientifically termed Post-Acute Sequelae of SARS-CoV-2 infection (PASC).

Of those 20 million people, about 416,000 long haulers live in Massachusetts.

Preliminary studies indicate that women are more vulnerable to Long COVID. The legislators also noted in the letter that COVID has disproportionately impacted certain communities of color, and “we suspect that Long COVID will mirror this trend.”

“To fully confront the ongoing pandemic, Congress needs disaggregated demographic data on the prevalence of Long COVID,” Pressley wrote. “CDC must publish findings on race, ethnicity, age, gender, previous disability, and other demographic characteristics. People across the country are experiencing long-term symptoms of COVID-19, and Congress deserves answers on the size and scope of this crisis.”

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