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Committee Detail

Note: An Annual Comprehensive Review, as required by §7 of the Federal Advisory Committee Act, is conducted each year on committee data entered for the previous fiscal year (referred to as the reporting year). The data for the reporting year is not considered verified until this review is complete and the data is moved to history for an agency/department. See the Data From Previous Years section at the bottom of this page for the committee’s historical, verified data.


HHS - 5136 - Chronic Fatigue Syndrome Advisory Committee - Authorized by Law
Hide Section - GENERAL INFORMATION

GENERAL INFORMATION

Committee NameChronic Fatigue Syndrome Advisory CommitteeAgency NameDepartment of Health and Human Services
Fiscal Year2018Committee Number5136
Original Establishment Date9/16/2002Committee StatusTerminated
Actual Termination Date9/5/2018Committee URLhttp://www.hhs.gov/advcomcfs
New Committee This FYNoPresidential Appointments*No
Terminated This FYYesMax Number of Members*Unlimited
Current Charter Date9/5/2016Designated Fed Officer Position Title*Senior Public Health Analyst, Office on Women's Health
Date Of Renewal Charter Designated Federal Officer PrefixCDR
Projected Termination Date Designated Federal Officer First Name*Gustavo
Exempt From Renewal*NoDesignated Federal Officer Middle Name
Specific Termination AuthorityDesignated Federal Officer Last Name*Ceinos
Establishment Authority*Authorized by LawDesignated Federal Officer SuffixMPH
Specific Establishment Authority*42 USC 217a, Section 222Designated Federal Officer Phone*202-401-9545
Effective Date Of Authority*9/5/2002Designated Federal Officer Fax*202-401-4005
Exempt From EO 13875 Discretionary Cmte Designated Federal Officer Email*cfsac@hhs.gov
Committee Type*Continuing
Presidential*No
Committee Function*Scientific Technical Program Advisory Board
Hide Section - RECOMMENDATION/JUSTIFICATIONS

RECOMMENDATION/JUSTIFICATIONS

Agency Recommendation*Continue
Legislation to Terminate RequiredNo
Legislation StatusNot Applicable
How does cmte accomplish its purpose?*The Committee advises and makes recommendations to the Secretary, through the Assistant Secretary for Health, on a range of topics including: (1) opportunities to improve knowledge and research about the epidemiology, etiologies, biomarkers and risk factors for ME/CFS; (2) research on the diagnosis, treatment, and management of ME/CFS and potential impact of treatment options; (3) strategies to inform the public, health care professionals, and the biomedical academic and research communities about ME/CFS advances; (4) partnerships to improve the quality of life of ME/CFS patients; and (5) strategies to insure that input from ME/CFS patients and caregivers is incorporated into HHS policy and research.
How is membership balanced?*The Chronic Fatigue Syndrome Advisory Committee (CFSAC) serves to provide science-based advice and recommendations to the Secretary, through the Assistant Secretary for Health, on a broad range of issues and topics pertaining to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and other related health conditions. The Committee brings together leading scientists, advocacy groups, patients diagnosed with ME/CFS, caretakers, and representatives from federal agencies to discuss advances in the diagnosis, treatment and prevention of ME/CFS. The Committee is comprised of 13 voting members with expertise in biomedical research in the area of ME/CFS, health care delivery services, insurers, voluntary organizations concerned with the problems of individuals with ME/CFS and patients and care givers. The voting members are appointed to serve overlapping terms of up to four years. The voting members are appointed by the Secretary. The Committee structure also includes eight non-voting, ex-officio members who represent the following five HHS agencies: Agency for Healthcare Research and Quality, Centers for Disease Control and Prevention, the Food and Drug Administration, the National Institutes of Health and the Health Resources and Services Administration plus three other federal agencies: the Social Security Administration, the Department of Veterans Affairs, and the Department of Defense. The non-voting ex-officio members provide critical information regarding their respective agency's activities related to ME/CFS at each Committee meeting. Composition of the Committee also includes three non-voting liaison representative positions occupied by individuals who are selected by their organizations to serve the interests of their respective organization. These organizations have interest in the work being done to properly address ME/CFS. The representative organizations are selected by the Designated Federal Officer (DFO) or designee and serve a term of two years. The following organizations currently occupy the non-voting representative positions on the Committee: (1) ME Action; (2) Massachusetts CFIDS/ME & FM Association; (3) Simmaron Research Inc.
How frequent & relevant are cmte mtgs?*The Committee is authorized to meet not less than two times a year. The Committee meets to receive, as well as share information about work that is being done to properly address this important public health concern.
Why advice can't be obtained elsewhere?*The establishment of this Committee was in the public interest. Chronic fatigue syndrome is a very debilitating health condition. Utilizing individuals who have knowledge and expertise in biomedical research, health care delivery services, and the problems of individuals living with ME/CFS will assist in developing departmental efforts to properly address this important public health concern.
Why close or partially close meetings?CFSAC meetings are open to the public.
Recommendation RemarksAt the first CFSAC meeting of FY18 held in December 2017, the Committee made a total of ten recommendations to HHS. 1. CFSAC asked HHS to disseminate the treatment recommendations in the 2014 IACFS/ME Adult Primer and in the 2017 ME/CFS Pediatric Primer; 2. CFSAC asked the CDC to continue to move forward with the June 2017 CFSAC recommendation to create a plan for developing clinical practice guidelines for ME/CFS; 3. CFSAC recommended that all educational materials disseminated by the HHS, VA and DoD for healthcare providers and for the general public be informed by the findings of the IOM, the IACFS/ME 2014 Adult Primer and 2017 ME/CFS Pediatric Primer; 4. CFSAC recommended that all outdated federal websites or outdated material provided by federal agencies be removed or updated as quickly as possible and by no later than the end of 2018; 5. CFSAC recommended that the materials provided by HHS, the VA and the DoD are to be regularly reviewed and updated as warranted by the research and consensus expert opinion; 6. a. CFSAC recommended that the agencies within the HHS provide sufficient funding for ME/CFS Project ECHO (Extension for Community Health Outcomes) programs, b. Provide funding for CME/CE training conferences/programs on ME/CFS led by experts for MD, DO, NP, PA, Nurses, Social Workers, Psychologists, Psychiatrists, c. Continue school health and pediatric ME/CFS educational initiatives as recommended in January 12-13, 2017 in person CFSAC meeting, d. Continue outreach to professional medical societies, internet medical provider information websites (e.g. UpToDate), and internet “public” medical websites (e.g. Mayo Clinic, Healthwise) to inform them of new information on the CDC and other federal agency websites; 7. Recommended that all materials published or distributed by HHS take special care to address negative provider attitudes and disease stigma; 8. a. Recommends that AHRQ works to get the 2016 Addendum of the 2014 ME/CFS AHRQ Evidence Review published in the Annals of Internal Medicine; 9. Endorsed the IAFCS/ME’s proposal for changes to the ICD-10-CM coding for ME/CFS and 10. Recommended that CMS be added as an ex officio when the charter is renewed in 2018.

At the second CFSAC meeting of FY18 held in June 2018, the Committee made a total of four recommendations to HHS. 1. CFSAC recommended that the National Center for Health Statistics work with ME/CFS experts and advocates to resolve concerns regarding the IACFS/ME proposal of how to reclassify CFS in the ICD-10-CM and ensure that the IACFS/ME proposal is placed on the agenda for the September 2018 meeting; 2. CFSAC recommended that CDC add a “diagnostic coding” section to its ME/CFS website for medical providers to explain that the code for “chronic fatigue, unspecified” (R53.82) should not be used for ME/CFS, and direct providers to use the existing code for myalgic encephalomyelitis or post viral fatigue (G93.3) when coding the diagnosis of ME/CFS; 3. CFSAC recommended that all federal agencies providing ME/CFS information and outreach to medical providers should include this diagnostic coding clarification related to a diagnosis of ME/CFS; aand 4. CFSAC endorsed the establishment of an ME/CFS Project ECHO (Extension for Community Healthcare Outcomes) or equivalent tele-mentoring program, to be conducted by ME/CFS disease experts and established through an existing academic center Project ECHO. Thus, CFSAC recommends that the relevant HHS agencies, including but not limited to CDC, HRSA, and AHRQ, plus the VA and DOD, evaluate the feasibility of supporting and promoting an ME/CFS Project ECHO and identifying potential grants, contracts, or other funding mechanisms that could be used to support the development of ME/CFS ECHO from the relevant agencies.

Committee members Alisa Koch, Jose Montoya, Donna Pearson and Faith Newton were extended up to 180 days. The members' term ended on 9.5.18 when the charter expired and the Committee was terminated.
Hide Section - PERFORMANCE MEASURES

PERFORMANCE MEASURES

Outcome Improvement To Health Or Safety*YesAction Reorganize Priorities*Yes
Outcome Trust In GovernmentYesAction Reallocate ResourcesNo
Outcome Major Policy ChangesYesAction Issued New RegulationsNo
Outcome Advance In Scientific ResearchYesAction Proposed LegislationNo
Outcome Effective Grant MakingNoAction Approved Grants Or Other PaymentsNo
Outcome Improved Service DeliveryYesAction OtherNo
Outcome Increased Customer SatisfactionYesAction CommentDuring each Committee meeting, the ex-officio members provide updated information regarding efforts and/or actions being undertaken by their respective agency to respond to the Committee's recommendations.
Outcome Implement Laws/Reg RequirementsNoGrants Review*No
Outcome OtherNoNumber Of Grants Reviewed0
Outcome CommentSince the inception of the Committee, the CFSAC website has been updated with links to other federal partners regarding ME/CFS and tools for caregivers and patients. Public testimonies have been posted to the website. The public has responded favorably to the CFSAC listserv established in June 2012 to provide additional means of communicating/disseminating information pertaining to CFSAC. A listening only telephone line is provided during all CFSAC meetings so the public could listen to the meetings.Number Of Grants Recommended0
Cost Savings*NoneDollar Value Of Grants Recommended$0.00
Cost Savings CommentNAGrants Review CommentNA
Number Of Recommendations*112Access Contact Designated Fed. Officer*Yes
Number Of Recommendations CommentSome recommendations overlap.Access Agency WebsiteYes
% of Recs Fully Implemented*32.00%Access Committee WebsiteYes
% of Recs Fully Implemented CommentN/AAccess GSA FACA WebsiteYes
% of Recs Partially Implemented*6.00%Access PublicationsNo
% of Recs Partially Implemented CommentNAAccess OtherNo
Agency Feedback*YesAccess CommentN/A
Agency Feedback Comment*The DFO communicates with the Committee Chair through regular conference calls and emails. Additional information pertaining to the Committee and other ME/CFS-related matters can be found on the Committee website. The ex-officio members and the DFO report on the status of Departmental efforts at each public meeting. The website is http://www.hhs.gov/advcomcfs/.Narrative Description*CFSAC supports the Department's efforts to advance the health and well-being of Americans and the Department's strategic goal of enhancing the capacity and productivity of the Nation's health science research enterprise. CFSAC provides expert advice and recommendations to the Secretary and the Assistant Secretary for Health on topics, incuding the epidemiology and risk factors relating to myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS) and diagnosis and treatment methods for the condition. The Committee also advises on the development and implementation of programs to inform the public, health care professionals, and the biomedical, academic, and research communities about advances related to CFS.
Hide Section - COSTS

COSTS

Payments to Non-Federal Members*$13,000.00Est Payments to Non-Fed Members Next FY*$0.00
Payments to Federal Members*$0.00Est. Payments to Fed Members Next FY*$0.00
Payments to Federal Staff*$123,272.00Estimated Payments to Federal Staff*$0.00
Payments to Consultants*$0.00Est. Payments to Consultants Next FY*$0.00
Travel Reimb. For Non-Federal Members*$28,000.00Est Travel Reimb Non-Fed Members nextFY*$0.00
Travel Reimb. For Federal Members*$0.00Est Travel Reimb For Fed Members*$0.00
Travel Reimb. For Federal Staff*$0.00Est. Travel Reimb to Fed Staff Next FY*$0.00
Travel Reimb. For Consultants*$0.00Est Travel Reimb to Consultants Next FY*$0.00
Other Costs$25,547.00Est. Other Costs Next FY*$0.00
Total Costs$189,819.00Est. Total Next FY*$0.00
Federal Staff Support (FTE)*1.50Est. Fed Staff Support Next FY*0.00
Cost RemarksEst Cost Remarks
Hide Section - Interest Areas

Interest Areas

Category
Area
Civil Rights
Children
Disabled
Minorities
Women
Health
Health Care
Medical Education
Medical Practitioners
Public Health
Treatment
Medicine
Diseases
Health and Health Research
Illnesses
Hide Section - MEMBERS,MEETINGS AND ADVISORY REPORTS

MEMBERS,MEETINGS AND ADVISORY REPORTS

To View all the members, meetings and advisory reports for this committee please click here
Hide Section - SUBCOMMITTEES

SUBCOMMITTEES

Committee

Subcommittees

 
ActionCommittee System IDSubcommittee NameFiscal Year
 COM-029579Medical Education Workgroup2019
 COM-032419Pediatric Education2019
 COM-032086Stakeholder Engagement Subcommittee2019
Hide Section - CHARTERS AND RELATED DOCS

CHARTERS AND RELATED DOCS

No Documents Found
Hide Section - DATA FROM PREVIOUS YEARS

DATA FROM PREVIOUS YEARS

Committee

Data from Previous Years

 
ActionCommittee System IDCommittee NameFiscal Year
 COM-002013Chronic Fatigue Syndrome Advisory Committee2017
 COM-002324Chronic Fatigue Syndrome Advisory Committee2016
 COM-003849Chronic Fatigue Syndrome Advisory Committee2015
 COM-004706Chronic Fatigue Syndrome Advisory Committee2014
 COM-005846Chronic Fatigue Syndrome Advisory Committee2013
 COM-006553Chronic Fatigue Syndrome Advisory Committee2012
 COM-008403Chronic Fatigue Syndrome Advisory Committee2011
 COM-008752Chronic Fatigue Syndrome Advisory Committee2010
 COM-010405Chronic Fatigue Syndrome Advisory Committee2009
 COM-010805Chronic Fatigue Syndrome Advisory Committee2008
 COM-012133Chronic Fatigue Syndrome Advisory Committee2007
 COM-012872Chronic Fatigue Syndrome Advisory Committee2006
 COM-013976Chronic Fatigue Syndrome Advisory Committee2005
 COM-014438Chronic Fatigue Syndrome Advisory Committee2004
 COM-016009Chronic Fatigue Syndrome Advisory Committee2003
 COM-016432Chronic Fatigue Syndrome Advisory Committee2002
 COM-017835Chronic Fatigue Syndrome Coordinating Committee2001
 COM-018773Chronic Fatigue Syndrome Coordinating Committee2000
 COM-019894Chronic Fatigue Syndrome Coordinating Committee1999
 COM-020383Chronic Fatigue Syndrome Coordinating Committee1998
 COM-021574Chronic Fatigue Syndrome Coordinating Committee1997