Bridging the Gap: Outreach and Engagement with the ME/CFS Community

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:

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


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

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