We are excited to announce the launch of the ME/CFS Collaborative Research Center’s outreach and engagement initiative led by the Center for Solutions for ME/CFS at Columbia University.
The cornerstone of this effort is the establishment of a Community Advisory Committee (CAC) to partner with the NIH Clinical Research Centers (CRCs) at Columbia University, Cornell University, The Jackson Laboratory, the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis (ICanCME) Research Network, and the Data Management Coordinating Center at RTI International. The CAC is comprised of 14 individuals including people living with ME/CFS, caregivers, advocates, and representatives from #MEAction and Solve ME/CFS Initiative. We at the Center for Solutions for ME/CFS at Columbia University will serve as the bridge between all stakeholders by coordinating the effort.
The CAC has designated working groups based on the needs of the community as well as the Collaborative Research Centers (CRCs). The initial working groups will focus on information dissemination to address communication matters, study feasibility to aid in clinical study design, and scientific priorities to develop recommendations for future ME/CFS research pathways. The goals of the CAC will be to increase communication, research participation, and accelerate the pace of research.
To complement this work, we have also created the Center for Solutions for ME/CFS Communications Hub, which is comprised of representatives from nine network-affiliated organizations. The Hub encourages cross-promotion and amplifies the distribution of network developments and findings. Our cooperative effort ensures the timely distribution of information and significantly broadens the reach to ME/CFS stakeholders.
For more information on the launch of the ME/CFS Collaborative Research Center’s outreach and engagement initiative, tune into the NIH’s ME/CFS Working Group Call this upcoming Thursday, November 5 at 11AM ET.
Click the link below to join the webinar:
https://nih.zoomgov.com/j/1608562314?pwd=Ny92SU81SFdJV1ZTL0I1WFUwalVjdz09
Passcode: MECFS2020
Center for Solutions Community Engagement and Outreach Team
Allison Kanas
Director, Community Outreach and Engagement
Sydney Silverman
Manager, Community Outreach and Engagement
CRC Community Advisory Committee
Amy Williams
BA Occupational Therapy
Microbe Discovery Project
Person living with ME/CFS
Angela Linford
Bateman Horne Center
Cherylle McFarlane, RN
Challenged with ME/CFS
Emily Taylor
Solve M.E.
Jaime Seltzer
#MEAction
Jessie Brown-Clark
Solve M.E.
Kathi Kuehnel, J.D.
ME/CFS Caregiver
Mary Dimmock
ME/CFS Caregiver and Patient Advocate
Neal Goldberg, PhD
Dr. Nina Muirhead, BMBCh(oxon) MEd
Chair Education Group, CMRC
Forward ME, UK
Individual Living with ME/CFS
Rochelle Joslyn, PhD.
Sabrina Poirer
ICanCME Research Network
Patient Partner in Research
Individual Living with ME/CFS
Susan Taylor-Brown, MD, PhD
Individual living with ME/CFS
Tahlia Ruschioni
Bateman Horne Center
Therese Russo, MPA
ME/CFS Patient Advocate
Individual Living with ME/CFS
