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As we enter the holidays we have a positive development to report coming out of yesterday’s ME/CFS stakeholder call with the U.S. Centers for Disease Control and Prevention (CDC). CDC has announced that it will not publish a systematic evidence review of ME/CFS treatments by the Oregon Health Science University Evidence-based Practice Center (EPC) in an academic journal. #MEAction supports this appropriate decision by CDC.
#MEAction had raised multiple concerns with the draft EPC review, and over seven thousand people across the ME community co-signed our public comment, which stated that the EPC review was fundamentally flawed and strongly recommended that it not be published.
CDC Chronic Viral Diseases Branch Chief Dr. Elizabeth Unger also stated in her program updates that “In the interest of transparency, we will be posting the final report, comments and responses on our ME/CFS website.”
During the call, #MEAction advocates asked Dr. Unger for CDC to hold a community meeting to dialogue about how the EPC review information could be shared on the website in an appropriate context to ensure there is no confusion for healthcare providers or harm to patients. Dr. Unger replied that CDC would consider that request.
#MEAction has written a follow-up letter to Dr. Unger underscoring the importance of holding a public community meeting. If the CDC ME/CFS program is unable to organize a meeting themselves, #MEAction will organize a community meeting and invite CDC representatives to participate as panelists.
We will update the community on this important issue and communicate news as it becomes available. Thank you for your continued support of #MEAction’s federal agency advocacy efforts. Progress would not happen without you.