In our latest “People in ME/CFS Research” spotlight, I was fortunate to visit Dr. Morris Papernik at his nearby clinic in Connecticut and interview him about his decades of clinical experience with ME/CFS patients. Dr. Papernik has been treating ME/CFS and Fibromyalgia patients for over thirty years, has served on the Chronic Fatigue Syndrome Advisory Committee (CFSAC), and we are very excited about the prospect of collaborating with him soon here at Jackson Labs for the ME/CFS CRC project. Read on to learn more about his background, his methods for diagnosis and treatment, and his opinion of the ME/CFS field.
On June 14, Derya Unutmaz gave a seminar talk for the Jackson Laboratory’s new speaker series, JAXtaposition: Cures Can’t Wait. The series, which is open to the public and features TED-style talks from faculty and senior leadership on the cutting-edge programs and research at JAX, focuses on a variety of important health topics, including cancer, addiction, and rare diseases, among others. Derya’s talk centered on the topic of chronic illness, and was focused specifically on ME/CFS.
In an article written about the event, Maggie Moore outlines Derya’s research plans for figuring out what causes the disease, and quotes him as saying, “we’re sequencing thousands of species of bacteria. We’re determining hundreds of different populations of immune cells in the same person. We’re also analyzing their metabolism and thousands of different metabolites in their blood. We’re trying to put the patient’s biology back together.” Derya believes in the importance of treating the patient rather than the disease, and says that in the context of understanding overall health, researchers are realizing that instead of keeping each of the body’s systems separated into unique areas of interest, we should integrate all of these systems back together to see the whole picture.
In our latest “People in ME/CFS Research” spotlight, I interviewed Alison Motsinger-Reif, Ph.D., an Associate Professor in Statistics at North Carolina State University, and the Biostatistics Lead for the JAX ME/CFS CRC. Alison has an interest in computational genetics, pharmacogenetics, and epistasis, and will be combining all of the microbiome, immune profiling, and metabolome data for the ME/CFS project into an interactome, where she can figure out which variables are relevant to the disease. Read on to learn more about her background, research plans, and how she got her start in science with Derya.
On June 20th and 21st, the US Department of Health & Human Services (HHS) will host its first Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting of 2018. CFSAC meetings occur twice per year, and the two-day meeting is set in a webinar format, including updates from government agencies like the CDC and NIH, as well as updates from advocacy organizations Simmaron Research, MEAction, and Massachusetts CFIDS, among others. Clinicians and researchers will speak as well, and this meeting will include Dr. Lucinda Bateman of Bateman Horne Center, who will give an update on the Medical Education Work Group, and Dr. Derya Unutmaz of Jackson Labs, giving a Research Update on Adult ME/CFS.
Participants can call in to listen to the webinar and watch a livestream of the meeting, and can ask questions of the speakers. The purpose of the meeting is to cover the recent topics and news surrounding ME/CFS, and determine important next steps in finding the causes of and treatments for this disease.