Free Online ME/CFS Video Series from Bateman Horne Center

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One of the missions of our clinical core at Bateman Horne Center (BHC) in Salt Lake City, UT is to educate patients, doctors, and researchers about ME/CFS and Fibromyalgia (FM). In honor of Dr. Lucinda Bateman’s birthday on November 9th, BHC has launched a digital patient education series. The purpose of this series is to help patients learn more about different aspects of ME/CFS so that they can take these principles to their primary care providers (PCPs).

The video series will cover fundamental issues in ME/CFS through six videos, released weekly for six weeks, and include topics such as getting the right diagnosis, cognitive impairment, restorative sleep, and others. After signing up, a link will be sent by email to allow access to the videos. The second video will be released on November 16th, and will cover “Activity Intolerance and Post-Exertional Malaise (PEM).”

Click here to sign up for the series on BHC’s website.
Click here to read BHC’s blog post about the video series. 

‘Gut-on-a-chip’ System Shows Intestinal Epithelial Barrier Disruption Initiates Gut Inflammation

Biomedical engineering assistant professor Hyun Jung Kim with the gut-on-a-chip. Source: Cockrell School of Engineering, The University of Texas at Austin

A new study in PNAS has linked the interaction between the intestinal epithelial barrier, the gut microbiome, and immune cells to intestinal inflammation. It is thought that the gut microbiota and immune cells contribute to gut inflammation, but until now, it has been difficult to identify exactly what triggers the onset of intestinal inflammation due to the complexity of the cross-talk between the multiple different cell types.

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Upcoming NIH ME/CFS Advocacy Telebriefing Call

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On October 23, the NIH will hold their third public ME/CFS Advocacy Telebriefing Call of 2018 to update the community on NIH’s efforts to advance research on ME/CFS, as well as to hear thoughtful feedback about the current efforts and research from the community. The call will be held from 12:00 – 1:00 pm ET.

To participate, you must first register for the event by emailing and saying that you plan to attend. The telebriefing meeting can then be accessed by dialing 866-844-9416 and using the passcode 7178985. If you will be calling from another country, there is a chart with access information for each country available after registration.

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

Collaborator Spotlight: Members of RTI International

Matt Schu (left), Linda Brown (center), and Becky McNeil (right), during a site visit to Jackson Labs.

For the next interview in our Spotlight series, I was able to take advantage of the opportunity to speak with a few members of the Data Management Coordinating Center (DMCC) for the ME/CFS project, who work at RTI International, during a recent site visit we had here at JAX. Linda Brown, PhD, the new Principle Investigator (PI) for the project, is an epidemiologist who has many years of experience working with NIH. Becky McNeil, PhD is a research statistician, and Matt Schu, PhD specializes in bioinformatics and data integration. Keep reading to learn more about their backgrounds, how RTI became involved in ME/CFS research, and the DMCC’s plans for integrating data and driving collaboration between the three centers. 

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A novel study from Jax ME/CFS Center on a human T cell subset involved in sensing the microbiome

Source: Jackson Labs, 2018

Jackson Labs ME/CFS Collaborative Center Director Derya Unutmaz and his collaborator and microbiome expert Julia Oh recently published a study in the journal Mucosal Immunology, titled “Tuning of human MAIT cell activation by commensal bacteria species and MR1-dependent T-cell presentation.” Mucosal-associated invariant T (MAIT) cells are a type of T cell present in various sites of the body, including the gut mucosa, and defend against microbial infection by recognizing a particular bacterial metabolite shown to them by antigen presenting cells (APCs). In the gut microbiota, there are many different species of bacteria present and yet, MAIT cells don’t mount an immune response to all of them. It is therefore likely that these cells can distinguish which types of bacteria are beneficial to us and which are harmful. The findings from this study could be highly relevant for ME/CFS patients, who are thought to have disruptions of both their immune system and their microbiome. 

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New NANDS Council Working Group for ME/CFS Research


The National Institute of Neurological Disorders and Stroke (NINDS) has recently created a new National Advisory Neurological Disorders and Stroke (NANDS) Council Working Group for ME/CFS Research. Implemented in the summer of 2018, the group is composed of clinicians, scientists, advocates, and individuals with ME/CFS, and has the purpose of providing scientific guidance on how best to advance research in ME/CFS at NIH. The group has been charged with assessing the current NIH ME/CFS research activities, including identifying opportunities and gaps in research, finding opportunities to train young investigators and attract new investigators to the field, and identifying effective structures for collaboration and communication between researchers, patients, advocacy organizations, and federal organizations.

The Council members include Chair Steven Roberds, Ph.D., Armin Alaedini, Ph.D.Lucinda Bateman, M.D.Jennifer BreaDane Cook, Ph.D.Carol HeadAnthony Komaroff, M.D., Amrit Shahzad, MBBS, MBA, and Steven Schutzer, M.D. The Working Group provides a great opportunity for scientists, clinicians, advocates, and patients to work together to guide research initiatives at NIH.

To learn more about the NANDS Council Working Group for ME/CFS Research, click here.

Courtney Gunter Visits the Bateman Horne Center

On August 23, 2018, I had the fantastic opportunity to visit our clinical core for the ME/CFS CRC at Bateman Horne Center (BHC) in Salt Lake City, Utah. During the site visit, I met everyone involved with the project, talked about some of the overall goals and initiatives of the clinic, and learned more about the patient recruitment process for research studies that BHC is involved with, such as for the research we’re doing here at JAX. I also gave a presentation to the BHC employees and Board about how and why we study the immune system at our CRC, and some of our community outreach initiatives that we hope will lead to patient engagement around our research, as well as forge relationships with ME/CFS physicians to further diagnosis and treatment of this disease.

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