AFM Diagnoses of 2018 – An Urgent & Important Request

Centers for Disease Control and Prevention (CDC) is conducting a case series activity by attempting to interview all confirmed 2018 Acute Flaccid Myelitis (AFM) patients and their families with a standardized questionnaire. The detailed questionnaire includes questions about exposures, illness just prior to onset, and healthcare-seeking behavior prior to limb weakness. CDC’s Institutional Review Board (IRB) package allows three months for data collection, and the last day for interviews is September 11, 2019. CDC is working through state and local health departments to conduct the interviews, and as of the third week of August, they have completed questionnaires for approximately 1/3 of the 233 cases in 2018. CDC and state and local health departments are making a limited number of phone calls and sending a text message to families.

If you or your child are one of those impacted by AFM in 2018, we encourage you to respond quickly to the call you have received or will receive from CDC or your local health department. If you’ve made an appointment for an interview to be conducted, please be available at the time you’ve scheduled. If you are a provider or a friend of a family impacted in 2018, please check with the family to see if they have reached back out in response to the call or text they may have received. The interviews are critically important in understanding the etiology and impacts of AFM. The findings will assist in assessing risk factors, establishing prevention measures, and developing treatments. Our hope is that every one of the 233 families will respond and have their stories heard by CDC. Your time, your story, and your family matters. Your contribution in sharing your story with CDC will assist all of us as we move forward and focus on what must be done in the future for all of those diagnosed with AFM. As an organization dedicated to awareness and research of this devastating disorder, we sincerely appreciate your participation and spreading the word about this important activity. If you have any questions, please feel free to reach out to us at info@myelitis.org.

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