USA: ME/CFS Collaborative Research Centers launch new Community Advisory Committee

[Andy]

From the NIH MECFS Information List emailing list

To foster communication and engagement with ME/CFS stakeholders, the ME/CFS Collaborative Research Centers have launched a new Community Advisory Committee (CAC), which will be managed by the Center for Solutions for ME/CFS at Columbia University.

The goals of the CAC will be to increase communication, participation, and the pace of research. The CAC will assign working groups based on the needs of the community as well as the Collaborative Research Centers. The initial working groups will focus on information dissemination to increase communication about CRC findings, study feasibility to ensure that researchers take into account sensitivities and limitations of clinical studies in people with ME/CFS, and scientific priorities to develop recommendations for future ME/CFS research efforts.

To learn more, please visit CfSforMECFS.org.

 

[Andy]

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.

https://cfsformecfs.org/2020/10/30/outreach-engagement/

 

[Andy]

Community Advisory Committee Introduces Guidelines to Accelerate Meaningful ME/CFS Research

"Researchers from across the NIH’s ME/CFS Collaborative Research Center (CRC) consortium held a two-day network meeting in October to share findings from their past four years of NIH-funded research. This year, the Community Advisory Committee (CAC) was invited to participate and also present its work. With support from the NIH, Columbia launched the CAC with the goals of increasing stakeholder communication and research participation, and accelerating the pace of ME/CFS research.

Centering the community perspective by including the CAC in the consortium’s meetings represents a shift from the norm: to the ME/CFS community, research has often seemed like a mysterious “black box,” with few mechanisms to ensure transparency and engagement. Patients often wait years for even interim updates on studies. People with ME/CFS have advocated for greater involvement at all stages of the research process for years, and patient advocacy was crucial to the establishment of the CAC.

Partnering with people who have lived experience with a disease leads to research that has a deeper impact and better outcomes in patient care 1. Meaningful patient inclusion also improves grant writing, recruitment strategy, dissemination strategy, patient interviews, data collection and both tool development and refinement. Despite these benefits, there are few efforts to include patient perspectives in ME/CFS research. The CAC was created to more effectively engage patients throughout the research cycle. "

https://cfsformecfs.org/2021/12/01/...nes-to-accelerate-meaningful-me-cfs-research/