On September 16, the CDC will hold an ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call to update the community on the CDC’s ME/CFS efforts, as well as to hear thoughtful feedback about the current efforts and research from the community. The conference call will also feature guest speaker Dr. Anthony Komaroff, MD, who will give a talk on “The Biology of ME/CFS: Emerging Models.” The call will be held from 3:00 – 4:00 pm ET.

The conference call can be accessed by dialing 1-888-989-4409 and using the participant code 8773805, or by viewing the meeting in webinar format at https://adobeconnect.cdc.gov/r4wnwwqqzvs0/. Note that questions for the CDC and guest speaker must be submitted in advance by emailing them to MECFSSEC@cdc.gov.

To view the event on the CDC’s website, click here. 

Vicky Whittemore, PhD, of the Trans-NIH ME/CFS Working Group, was recently interviewed by Llewellyn King of ME/CFS Alert, and a video of the interview has been made available to the public. Vicky is the Program Officer for NIH ME/CFS grants, and has a number of ME/CFS grants in her portfolio that she manages the research programs for, including the three ME/CFS Collaborative Research Center grants at Cornell University, Columbia University, and here at The Jackson Laboratory.

In the interview, Vicky discusses the fact that there are a lot of triggers that can cause ME/CFS in patients, so this requires research to be done on lots of different systems of the body. Therefore, NIH has set up the Trans-NIH ME/CFS Working Group, which has representatives from each of the 24 institutes at NIH. The goal is to separate out what could be a trigger for ME/CFS, and what underlying problems could cause ME/CFS to result from these triggers for some people but not for others. NIH is dedicated to building the research field for ME/CFS, and together with researchers, are determined to find answers. Vicky and Llewellyn discuss how the grant cycles work at NIH, and what can be done to increase the number of applications for grants since NIH receives very few applications for ME/CFS grants each grant cycle.

Vicky also tells Llewellyn about how she got into ME/CFS research, more about what she does as a Program Officer at NIH, some of the progress that has been accomplished at the three CRCs, and where she thinks there will be a breakthrough in the field.

To watch the interview with Vicky Whittemore, click here. 

Research in the ME/CFS field has implicated immune and microbial dysbiosis in ME/CFS patients, so a major goal of our ME/CFS Center at JAX is to deeply characterize patient clinical phenotypes together with immunologic, metabolic, and microbiome markers in the blood and gut. Over the course of the five year study, we aim to recruit 150 ME/CFS patients and follow them through three time points over the course of three years, where we will collect detailed clinical information, blood, and stool samples. We also aim to recruit 100 age- and sex-matched healthy controls, and 50 controls will be followed through a second time point. As we approach the end of second year of the study, we would like to share some of our progress with the ME/CFS community.

Continue reading “JAX ME/CFS CRC Scientific Progress – 2019” →