Great Opportunity for Phoenix Rising to Represent the ME/CFS Community at CFSAC!

Phoenix Rising has the chance to apply for one of 3 non-voting liaison representative positions for ME/CFS organizations on the CFSAC committee – but we only have until Feb 22 to choose our representative and submit our application, so it’s all hands to the pump!

The federal advisory committee for chronic fatigue syndrome meets twice a year in live webcast events
The federal Chronic Fatigue Syndrome Advisory Committee (CFSAC) meets twice a year in live webcast events

 The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of the US Department of Health and Human Services (HHS) on a broad range of issues and topics related to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Issues covered by CFSAC can include factors affecting access and care for persons with ME/CFS; the science and definition of ME/CFS; and public health, clinical, research, and educational issues related to ME/CFS. In recent years, Phoenix Rising and its members have followed CFSAC meetings with great interest through live video feeds, Phoenix Rising articles, forum discussion threads, and our innovative ‘Cover It Live‘ feeds.

Now, Phoenix Rising members have the opportunity to send their own non-voting representative to CFSAC meetings. Nominations are now being sought for three new non-voting ‘liaison representatives’ of ME/CFS organizations on the committee. Priority will be given to “U.S.- chartered 501(c)(3) organizations that operate within the United States and have membership with demonstrated expertise in ME/CFS and related research, clinical services, or advocacy and outreach on issues concerning ME/ CFS” – so we should be in pole position! If Phoenix Rising’s application is successful, our representative will be able to relay concerns, advice, suggestions and recommendations from the Phoenix Rising community directly to the voting members at the CFSAC meetings.

The organizations chosen will occupy the position for the next 2 years and the representative is required to attend at least one CFSAC meeting each year, but our aim will of course be for our representative to attend all 4 CFSAC meetings in the next 2 years. Phoenix Rising will fund the expenses for the representative to attend the CFSAC meetings in Washington, DC (which occur twice a year, during the designated term of appointment) and may be able to pay for their services depending on the costs. We will use part of the Chase grant to accomplish this.

Full details of the Solicitation of Nominations for Organizations To Serve as Non-Voting Liaison Representatives to the Chronic Fatigue Syndrome Advisory Committee (CFSAC) start halfway down the third column in this PDF file.

How are we proposing to identify and choose nominations for this position?

The Phoenix Rising board want our representative at CFSAC to be chosen by our members and to represent the views, concerns and expertise of the whole of our community, using our forums and other communications solutions to provide all of our members with a voice on the committee. 

CFIDS_Association_Open_Science We also aim to form a team of advocates to work together with the CFSAC representative, formulating ideas and organizing discussion about areas of concern for the community prior to the actual meetings. During the meetings, this Advocacy Team would have two-way communication with the Phoenix Rising CFSAC representative, allowing them to relay ideas, questions, advice and recommendations from members directly to the representative. Phoenix Rising has the means to enable the Advocacy Team to organize its ideas, advice and recommendations and to poll the community in order to gain a complete understanding of current concerns and issues and what is important to the community.

We are therefore inviting our members, readers, patient experts, caregivers and friends to:

  • register their interest in the position of Phoenix Rising’s CFSAC representative; 
  • nominate possible CFSAC representatives from amongst our membership or from the wider ME/CFS community;
  • join the new Advocacy Team which will support our representative in their work;
  • offer to supply letters of recommendation in support of our application. (Our application will also need 1-3 letters of recommendation from individuals who are not part of Phoenix Rising’s leadership).

Please submit all nominations, applications, letters of recommendation and expressions of interest by email to For nominations, please indicate whether the nomination is to be part of the Advocacy Team or the CFSAC representative and state any relevant qualifications for the position.

(Please note that the representative must be resident within the continental United States, and because of the non-profit status of Phoenix Rising, no one that is currently involved in a for-profit ME/CFS related enterprise is eligible to be nominated for the Advocacy Team or for the CFSAC Representative position. Also, any person that has potential conflicts of interest (CI) with other organizations or business ventures is ineligible for nomination for the Phoenix Rising Advocacy Team or the CFSAC Representative position).

The board will curate the nominations and applications. If we receive sufficient qualified nominations by Feb 13th, we will close nominations at that point and hold a poll to enable the community to vote on the Phoenix Rising CFSAC Representative. If time does not allow for a community vote, the Phoenix Rising board will select a representative based on the qualifications each person has demonstrated.

This is a great opportunity, but time is short! Our application must reach the HHS by Feb 22, so we need to hear from you as quickly as possible. Now is the time for us to build on the experience and expert knowledge of our community and make a real difference in ME/CFS advocacy!




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