Our Association has been invited to nominate a representative to the Technical Development Workgroup, sponsored by the Centers for Disease Control and Prevention, ME/CFS program. Our nominee, a patient and Board member, not only has a background in public health but will also bring the patient's voice to this project. This project will begin shortly and is expected to terminate sometime in 2017.
A description of the project follows:
"The Centers for Disease Control and Prevention’s ME/CFS program is embarking on a collaborative process to assess and revise existing educational materials and create new materials to incorporate the recommendations of the 2015 Institute of Medicine (IOM) report, Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. This report proposes new diagnostic criteria that are more focused on the central symptoms of ME/CFS and designed to increase the likelihood of timely recognition and diagnosis by healthcare providers. We would like to invite your organization to participate in this collaboration by nominating a representative to serve as a member of the Technical Development Workgroup (TDW).
"The role of the TDW will be to participate in a process to help identify needs and priority topics for ME/CFS information and educational materials. We anticipate that your involvement on the TDW would require about 50 hours during the next 16 months, primarily through telephone interviews, review of brief documents, and possibly one in-person committee meeting.
"CDC is committed to ensuring that any educational materials are evidence-based, understandable, and useful to stakeholders. For this reason, the process for designing these materials must be a transparent collaboration that involves healthcare professionals, patients and advocates, medical educational organizations, and federal agencies."