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 myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) research. The CAC is a group of 15 individuals from various professional backgrounds, all of whom have lived experienceContinue reading “Community Advisory Committee Develops Priorities for ME/CFS Research”
Category Archives: ME/CFS
Community Advisory Committee – Guidelines for the Design of Clinical Studies in ME/CFS
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”
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”
Redox Imbalance: A Core Feature of ME/CFS and Acute COVID-19
Anthony L. Komaroff, MD ME/CFS is defined exclusively by symptoms—subjective experiences that are hard to verify by objective testing. For that reason, since interest in ME/CFS began to grow in the 1980s, scientists have been looking for evidence of underlying objective abnormalities that might explain the symptoms. A recent review, published August 24, 2021, inContinue reading “Redox Imbalance: A Core Feature of ME/CFS and Acute COVID-19”
ME/CFS Research: State of the Art, State of the Science
Written by Dr. Anthony Komaroff On June 7, 2021, Drs. Lipkin and Komaroff published an article in Trends in Molecular Medicine on the state of ME/CFS research in the wake of COVID-19. An illness like ME/CFS has been described in the medical literature for several hundred years. Yet, when interest in the illness resurfaced inContinue reading “ME/CFS Research: State of the Art, State of the Science”
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”
CfS for ME/CFS Drs. Komaroff and Bateman participate in MEAction Presser
On March 25, #MEAction hosted a telepresser featuring a panel of experts uniquely positioned to speak to how long COVID is being informed by the research on myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). Long haulers are overwhelmingly reporting symptoms that resemble ME/CFS at six months, and researchers are expecting the number of people withContinue reading “CfS for ME/CFS Drs. Komaroff and Bateman participate in MEAction Presser”
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”
Will There Be a Post-COVID-19 Form of ME/CFS?
By Dr. Anthony Komaroff Will some people who get COVID-19 subsequently develop ME/CFS? After all, many people with ME/CFS say that their illness began with some kind of infection: “a virus,” “a flu,” “a bad cold.” When it started, their illness didn’t feel that different from similar illnesses in the past, so no tests wereContinue reading “Will There Be a Post-COVID-19 Form of ME/CFS?”
CENTER FOR SOLUTIONS FOR ME/CFS 