Solve M.E. Joins Lawmakers in Asking CDC to Make Long Covid Data Publicly Available

Dear friend,

This week, Representatives Ayanna Pressley and Don Beyer authored a letter to Centers of Disease Control and Prevention (CDC) Director Dr. Rochelle Walenksy asking the CDC to make Long Covid demographic data publicly available. The letter specifically calls 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. We celebrate the advocates who spearheaded this effort, including Long COVID Alliance co-founders COVID-19 Longhauler Advocacy Project.

Solve M.E. has authored a letter of support, voicing our agreement with this request. We are inviting both individuals and organizations to join us in signing this letter.

Like Reps. Beyer and Pressley, we believe that this information is needed in order to ensure an equitable recovery from the pandemic and help us better prepare for future pandemics.

Having 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.


Emily TaylorVice President of Advocacy and Community RelationsSolve M.E.

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