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Standard Operating Procedures for CFSAC Meetings

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) a federal advisory committee which reports to the Assistant Secretary for Health (ASH), Department of Health and Human Services (HHS), and it was chartered in accordance with the Federal Advisory Committee Act (FACA) (Public Law 92-463).

The primary purpose of the CFSAC is to provide advice and recommendations to the Secretary of HHS regarding issues related to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Through the course of routine CFSAC activities and meetings, documents are generated that typically undergo a variety of review processes, ultimately becoming part of the official record of the committee.

As the committee’s most recent Charter requires that strategies be recommended to “insure that input from ME/CFS patients and caregivers is incorporated into HHS policy and research…” Input from patients has occurred through public comment sessions and through a series of workgroup meetings during which ME/CFS advocates have been able to participate.  When it comes to public comments CFSAC will encourage:

  • Participation on workgroups by knowledgeable advocates;
  • Stakeholders will be notified of meeting topics at least two weeks prior to the deadline for submission of Public Comments;
  • The public comment processes at in-person meetings shall be three minutes per individual and shall include time for follow-up questions or discussion if requested by members of the Committee;
  • Stakeholders in attendance at in-person meetings shall be invited to provide further information on topics of discussion prior to the Committee’s final deliberations and vote;

Nothing on this page should be thought to supersede any FACA records handling requirements. This serves only to compile a list of procedures for CFSAC activities and to identify persons who shall be responsible for coordination of the items involved.

1. CFSAC Meetings

  1. Agenda Development
    1. Potential topics for inclusion on the CFSAC meeting agenda are identified through conversations between the CFSAC Chair and the Designated Federal Official (DFO) in consultation with any Work group Chair. Sources for topics include, but are not limited to, updates from working groups, presentation of draft reports and/or recommendations for deliberation, prior meeting discussions, input from stakeholders, or emerging issues related ME/CFS.
    2. Following development, refinement and approval of the agenda by mutual consent of the CFSAC Chair and DFO, the Agenda shall be posted on the CFSAC website at least one week prior to the meeting.
  2. Federal Register Notice
    1. CFSAC meetings shall be announced in the Federal Register, in accordance with FACA requirements.  CFSAC meetings can occur in-person or webcast.   The format of each meeting (i.e. in person or via public teleconference) shall be clearly identified in the Federal Register. Meetings will be accessible to the public in accordance with FACA requirements for advisory committee meetings.
    2. The Federal Register Notice shall include the request for public comments to be submitted to the CFSAC mail by a given deadline. 
    3. When possible, the Supplementary Information in the Federal Register Notice of Meeting for CFSAC should identify key topics to be discussed, along with an invitation to the public to address their comment on those topics at their discretion.  In the event key topics have not been included in the Federal Register Notice, a CFSAC listserv notice will be sent at least two weeks prior to the deadline for submission of comments.
  3. Meeting Logistics
    1. Upcoming meetings of the CFSAC should be posted on the CFSAC website at least 6 months in advance under the direction of the DFO.
    2. At least one week prior to the meeting, the CFSAC support team will provide Committee members (via email) an electronic file with the written public comments received by the posted deadline on the Federal Register Notice. The support team will ensure that the author’s name is clearly identified on each written comment.
    3. Meetings of the CFSAC to be held via public teleconference should utilize WebEx or comparable technology in order to facilitate stakeholders’ remote participation.
    4. At least one week prior to the meeting, CFSAC support staff shall populate USB drives with the agenda, presentations, public comments, and a list of scheduled meeting participants.
    5. Because of the multiple methods to access the meeting, there can be difficulties in knowing who is speaking or in hearing comments. The Chair and DFO should stress to speakers the importance of microphone use and personal   identification when speaking, particularly for meeting participants attending via teleconference.
    6. Voting CFSAC members, along with non-voting ex officio and liaison members, will be seated at a common table. A general scheme for seating is shown in the Appendix. All committee members will have a name tent at their table location, for ease of identification.
    7. Based on the June 2017 recommendation, the DFO will work with the Committee Chair to have medical research on ME/CFS presented to the committee during the meeting on an annual basis.
    8. Every effort shall be made to begin (and reconvene) the meeting on time.  General housekeeping and non-essential discussion will be kept to a minimum in order to allow maximum time for committee discussion and stakeholder involvement.
    9. When determining the location and services for an in-person meeting, every effort shall be made to provide reasonable accommodations regarding the special needs of persons with the disease.
    10. Every meeting will begin with a discussion of the last meeting’s recommendations made to the Secretary followed by an update from the DFO or the ex officios.
  4. Meeting Materials
    1. A week prior to the meeting, all meeting materials (e.g., ex-officio and other reports, background documents, public comments and presentations as outlined in section C.2. herein) will be provided to CFSAC members via email in order that they be thoroughly reviewed in advance and then an USB drive will be given to every member at the meeting for their record as well.
    2. Unforeseen or supplemental materials not provided via email in advance will be made available during the meeting and added to the USB drives to be distributed to every member.
    3. Materials and folders within the USB will be numbered by tabs corresponding to each session.
    4. Presentations, public comments and any workgroup final recommendations must be made 508 compliant (if needed) prior to posting them on the website.
  5. Public Comments
    1. At all CFSAC meetings, time shall be dedicated for public comments. Depending on the agenda, the DFO will determine if each individual will provide his/her public Comments for three minutes.
    2. The DFO will build a schedule and assign the time for each individual wishing to provide public comments. Priority will be given to those who have not spoken in the past year.  When feasible, comments regarding key topics shall be scheduled in order to be heard prior to committee discussion and vote on that topic.
    3. For in-person meetings, public comment can be provided by in-person attendees and those on the phone.
    4. For teleconference meetings, public comment will be provided by teleconference. When teleconference participants are given the opportunity to provide comment, the DFO will inform the phone bridge operator, who will queue interested individuals, allowing one person to speak at a time.
    5. For individuals unable to give public comment during the specified comment period, written comments can be submitted via email to the CFSAC inbox by the deadline stated on the Federal Register Notice.
  6. CFSAC Workgroups
    1. Workgroups created during CFSAC meetings should involve the ex officio(s) whose agency(s) will be affected by recommendations to be developed by that Workgroup.
    2. Upon establishment of a new Workgroup, a CFSAC list serve notice will be published in order to invite stakeholders to submit their letter of interest in the event they wish to serve.

2. CFSAC Meeting Minutes and Tracking of Action Items

  1. Meetings are attended in person or via the phone by a note-taker who tracks meeting presentations, discussions and votes in real-time.
  2. Two weeks after the meeting, meeting minutes are forwarded from the note-taker to the DFO for preliminary review.
  3. Following the DFO review, the minutes, with changes tracked and comments embedded, are returned to the CFSAC Chair for clarification, additional edits or comments.
  4. Once the CFSAC Chair is satisfied with the minutes, he/she will indicate to the DFO that the minutes are final. Finalized minutes are posted to the CFSAC website for the public to see.
  5. Prior to the next CFSAC meeting, the DFO will provide committee members with a copy of the minutes from the last meeting for review. At the meeting, the chair will request any additional comments or changes. If the Committee is satisfied with the minutes, a vote for approval will be taken. The revised minutes will be posted to the CFSAC website, in place of the previously Chair approved minutes.
  6. All presentations, public comments, recommendations and agency response to the recommendations must be posted on the CFSAC website for the public to see.

3. After the meeting

  1. The DFO will submit to the ITAS time keeper an attendance timesheet of those CFSAC members who participated at the meeting in order for their time to be entered into the system for proper payment.

4. CFSAC Recommendations Memo to the ASH

  1. Following each CFSAC meeting, the chair will provide a letter to the ASH, stating the recommendation developed at the meeting.
  2. The letter is designed to brief the ASH on the activities of CFSAC and must include the agency’s response affected by the recommendation. The DFO must get the agency responses from the respective ex officio.
  3. After transmittal to, and acceptance by, the ASH, the recommendations memo will be posted on the CFSAC website, linked to the presentation and background information by which such recommendation were developed.
Content created by Advisory Committee - Chronic Fatigue Syndrome
Content last reviewed on October 13, 2017