U.S. – Center for Solutions for ME/CFS Seeks Applicants for Community Advisory Committee

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The Center for Solutions for ME/CFS is seeking applications for the Community Advisory Committee. The deadline is Monday, July 9.
Apply here: CAC applicationavailable in Google Forms.
The Center for Solutions for ME/CFS (CfS for ME/CFS) is a multi-institutional, inter-disciplinary research center dedicated to understanding the biology of ME/CFS, and developing diagnostic tests and methods for preventing and treating disease. It builds on decades of work by a network of expert clinicians and laboratory scientists with expertise in epidemiology, infectious disease, immunology, genetics and biochemistry, as well as a large cohort of well-characterized patients and biological samples. Our efforts will be linked with those of other Collaborative Research Centers and guided by close interactions with the ME/CFS community.
The Center, directed by W. Ian Lipkin, is conceptualized as a “center without walls.” The administrative core of the Center is housed in the Center for Infection and Immunity at Columbia University’s Mailman School of Public Health. Scientific and clinical activities comprise three distinct but interrelated projects.
Key Center faculty and staff include Dana March (Columbia, Deputy Director, Administrator, Co-Investigator project 3); Oliver Fiehn (UCD, Co-Lead, Project 2); John Greally (Einstein, Co-Lead, Project 2); Anthony Komaroff (Harvard, Lead, Project 3); clinical Co-Investigators for Project 3, Lucinda Bateman (Bateman Horne Center), Daniel Peterson (Simmaron), Susan Levine (Private Practice), and José Montoya (Stanford); and Paul Newswanger (Columbia, Project Coordinator).
The Community Advisory Committee, the Scientific Advisory Board, and the Internal Executive Committee will advise Center activities.
Purpose of the Community Advisory Committee:
The specific role of the Community Advisory Committee is to assist with the development and execution of community engagement/outreach and partnership activities. It will help focus the CfS for ME/CFS investigators on patient priorities and challenges, serve as a communications liaison between the ME/CFS community and the Center, assist with study recruitment, and inform the clinical research that the CfS for ME/CFS conducts.
Specifically, the Community Advisory Committee will:

  • Work with CII to disseminate information to the community about the Center’s research and opportunities for participation
  • Communicate with the Center about community needs, priorities, and current and past research
  • Assist the Center in weighing and balancing the strategic priorities among stakeholders (e.g. patients, caregivers, families, other advocates, etc.)
  • Participate in the development of working groups for select Center activities (e.g. epidemiological analyses, clinical protocols, mobile app development, etc.) In cases where additional expertise will be helpful, working groups may include participants that are not part of the core CAC.

Composition of the Community Advisory Committee: 
The Community Advisory Committee (CAC) shall comprise 11 members, three of whom will be representatives from partner organizations—#MEAction, The Microbe Discovery Project, and Solve ME/CFS Initiative—that signed on as collaborators during the preparation of the funding application for the Center. The remaining eight members of the CAC will come from the ME/CFS community and shall comprise a diverse group of ME/CFS patients and other community advocates to ensure broad community representation.
Each representative will serve a one-year term, renewable. The Community Advisory Committee will participate in six bimonthly teleconferences annually. An optional in-person meeting once a year may be added if members of the CAC and the Columbia team decide it would help the Center’s activities.  
To accommodate possible health status changes of CAC members, the CAC will be considered to have a quorum when at least 6 members are present at any meeting. A simple majority will be used to determine consensus. Meetings will be capped at one hour to accommodate schedules and health status of CAC members unless otherwise discussed.
Honorarium: 
Each CAC member will receive an honorarium of $400 for each annual term served.
For additional questions, please contact Paul Newswanger via email at [email protected] or phone at 212 342 3005.
 

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