Update on Recommendations January and June 2017 CFSAC Meetings Dr. Faith Newton, Ed.D. Chair, CFSAC December 2017 Meeting Professor Delaware State University Dover, DE
June 2017 Recommendation #1 and Response • It is the recommendation of the committee that providing updates on adults and pediatric ME/CFS research be an agenda item at all CFSAC meetings . • HHS Response: The Designated Federal Officer will work with the Committee Chair to have medical research on the illness presented to the committee on an annual basis. This request will be also added to the Standard Operating Procedure for CFSAC .
June 2017 Recommendation #1 Update • On December 14 th Dr. Jose Montoya will provide an update on research on adults with ME/CFS and Dr. R os Vallings, will provide an update on research on young people with ME/CFS.
June 2017 Recommendation #2 • Develop Diagnostic Tools and Clinical Practice Guidelines: CFSAC recommends that disease-specific diagnostic tools be developed and validated in collaboration with disease experts and also that comprehensive Clinical Practice Guidelines be developed in accordance with the IOM's Standards for Developing Trustworthy Clinical Practice Guidelines.
June 2017 Recommendation #2 Response • CDC Response (revised from its original response in 2015): CDC recognizes the importance of developing Clinical Practice Guidelines for use by primary care physicians. These guidelines need to fulfill evidence-based standards, such as Grade and IOM’s Standards for Developing Trustworthy Clinical Practice Guidelines, and need to be developed in a collaborative and transparent manner. CDC will develop a plan for developing these guidelines to be reviewed and supported by trans-HHS ex officio working group as soon as feasible. Updates on this process will be provided to CFSAC at each meeting.
June 2017 Recommendation Update • Ermias Belay, MD ex officio Member of CFSAC will provide an update on Recommendation #2 during the CDC’s presentation on Day 2.
January 2017 Recommendation • CFSAC recommends that: In acknowledgement of the serious educational implications of ME/CFS in children and adolescents, an ex-officio member from the US Dept of Education be added to CFSAC. We further recommend that this individual be well-versed in the provision of accommodations and services under Section 504 of the Civil Rights Act and the special education services under the Individuals with Disabilities in Education Act (IDEA).
Response to Recommendation • OASH Response: The Office on Women’s Health will be working with the OASH Committee Management Officer to revise the current CFSAC charter to include an ex officio from the Department of Education. • Update: The Committee Management Officer advised that the ex officio from the Department of Education should be officially added when the char ter is renewed. I n March, t he D FO reached out to Carmen Sanchez and invited her to represent the Department of Education on CFSAC until an official appointment is made.
January 2017 Recommendations Update • CDC Response: The ME/CFS program fully agrees with CFSAC recommendations and is working towards implementation. CDC has initiated email correspondence with Carmen Sanchez (Department of Education) and Beth Mattey (National Association of School Nurses) to plan next steps. Progress will be included in CDC’s report to CFSAC.
January 2017 Recommendations Update • CDC and the National Association of School Nurses collaborate to develop and disseminate educational materials on ME/CFS as it affects children and adolescents. • Dr. Newton will provide an update on this during her working group presentation on Thursday, December 14 th .
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