The Community Advisory Committee (CAC) for the NIH ME/CFS Research Network was established to bridge the gap between researchers and the ME/CFS community with the goal of accelerating the pace of ME/CFS research. The CAC is a group of 15 individuals from various professional backgrounds, all of whom have lived experience of the disease. TheContinue reading “Community Advisory Committee – Guidelines for the Design of Clinical Studies in ME/CFS”
Category Archives: Community Advisory Committee
Community Advisory Committee Introduces Guidelines to Accelerate Meaningful ME/CFS Research
by Therese Russo and Kathi Kuehnel, lead authors on behalf of the Community Advisory Committee 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 participateContinue reading “Community Advisory Committee Introduces Guidelines to Accelerate Meaningful ME/CFS Research”
The Coding Problem—Why no American can develop ME/CFS, including after COVID
Mary Dimmock Please sign this petition to fix the coding problem that makes Americans with ME/CFS invisible. If a tree falls in the forest, does it make a sound? And if an American develops ME/CFS, would the US disease tracking systems know about it? Philosophers may debate the first question but the answer to theContinue reading “The Coding Problem—Why no American can develop ME/CFS, including after COVID”
A letter from our Community Advisory Committee
Francis S. Collins, M.D., Ph.D. Director, National Institutes of Health (NIH) 9000 Rockville Pike Bethesda, Maryland 20892 Dear Dr. Collins, We are a Community Advisory Committee established with the support of the NIH to advise the ME/CFS Collaborative Research Center consortium. We are housed at the Center for Solutions for ME/CFS at Columbia University. OurContinue reading “A letter from our Community Advisory Committee”
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, CornellContinue reading “Bridging the Gap: Outreach and Engagement with the ME/CFS Community”
CENTER FOR SOLUTIONS FOR ME/CFS 