CDC Report to the HHS CFS Advisory Committee December 13-14, 2017 - PowerPoint PPT Presentation

National Center for Emerging and Zoonotic Infectious Diseases CDC Report to the HHS CFS Advisory Committee December 13-14, 2017 Ermias Belay, MD Associate Director for Epidemiologic Science Division of High-Consequence Pathogens and Pathology (DHCPP) ex officio Member CFSAC

Progress Report on ME/CFS Webpages Sections for general public were posted June 2017 • Fact sheets in pediatric section available in • downloadable PDF (one sheet, two sides) October 2017 – Fact Sheet for Education Professionals – Fact Sheet for Healthcare Professionals – Fact Sheet for Parents and Guardians Section for Healthcare Professionals nearly complete • – December - final review planned – January/February – clearance; posting once content is cleared

Stakeholder Engagement & Communication Call (SEC) 10 th call Thursday, November 2, 2017 at 3:00 pm - 4:00 pm EDT • Invited speakers – Lucinda Bateman MD; Ellen Clayton, MD, JD; Peter • Rowe, M D (2 members and c hair of IOM Committee on M E/CFS) – Take Home Messages from the 2015 Institute of Medicine Report on ME/CFS Transcript and audio file of call are available on CDC ME/CFS web page: • https://www.cdc.gov/me-cfs/programs/meetings.html – Posted November 21, 2017 – Transcript of 9 th call also available

Live Continuing Education Event in Atlanta Held N ovember 30, 2017; 6:30 – 8:30 • p.m. in S avannah C ollege of Art and Design, S CADshow Theater, A tlanta GA Free admission, Free CE units for • physicians, nurses, pha rmacists, veterinarians, he alth e ducation specialists, p ublic health professionals PBS-edited version of documentary • “Unrest” followed by panel discussion – Jen Brea, Nancy Klimas, Elizabeth Unger, Robin Curtis (moderator)

Presentations Since June 2017 Immunogenomics 2017, October 2-4, 2017, Huntsville AL • – “Can the Immune Repertoire Lead to Understanding ME/CFS?” Solve ME/CFS Initiative Think Tank, October 13-14, 2017, Tysons • Corner, VA – “Summary of CDC’s Activities and P lans” 2017 Annual Meeting and Expo of American Public Health • Association, November 4-7, 2017, Atlanta – Several presentations (next slide)

APHA 2017 Presentations Special symposium organized by Dr. Lily Chu – Myalgic • Encephalomyelitis/Chronic Fatigue Syndrome: Fact, Fiction, Findings – “Epidemiologic Approaches to Capturing Heterogeneity of ME/CFS” Oral and Poster Presentations: “Stress and disease: Examining the • relationship be tween allo static load a nd M E/CFS”; “Application o f tensor factorization t echnique to identify subgroups in M E/CFS: population- and tertiary-based samples”

Other Programmatic Activities Since June 2017 Meeting of MCAM Investigators scheduled for December 8, 2017 • – Supplement MCAM with c linics enrolling children or adolescents with ME/CFS and other illnesses as comparison groups (with Eagle Global Scientific) Planning CE module with W ebMD/Medscape – target launch M ay 2018 • – “Spotlight” activity (moderated pa nel discussion be tween he althcare providers) on c linical methods to assess ME/CFS using IOM recommendations Planning next Roundtable process for stakeholder engagement • – Identify additional educational materials meeting needs of healthcare providers (with M cKing Associates)

Collaborative Activities Active participation o n C FSAC workgroups • – Pediatric Education W orking Group – Medical Education W orking Group ME/CFS Common D ata Element Project • – Collaboration w ith N IH/NINDS – Co-funded b y CDC and N IH/NINDS FDA Drug Development Tool Qualification P rogram • – Sharing MCAM data to advance work for Qualification f or Clinical Outcome Assessment (COA) DDT#080: ME/CFS/SEID

Progress on CFSAC Recommendations Center for Parent Information a nd R esources (CPIR) developing ME/CFS • landing page in c ollaboration w ith C DC including links to – CDC ME/CFS website – DOE and C PIR resources Gathering information a nd g uidance on o ptions for process leading to • development of federal treatment guidelines for ME/CFS – Early 2018 target date for plan pr oposal to HHS ex officio members of CFSAC

Thank you https://www.cdc.gov/me-cfs For more information, contact CDC 1-800-CDC-INFO (232-4636) TTY: 1-888-232-6348 www.cdc.gov The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.