NIH ME/CFS Advocacy Call: Video and Transcript Now Available

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On March 17, 2020, the NIH hosted a call to update the community on their efforts to advance research on ME/CFS. The advocacy call featured updates from Dr. Joe Breen on what each of the three CRCs have recently been working on, plus Data Management initiatives from the ME/CFS Consortium, and from Vicky Whittemore on the Trans-NIH ME/CFS Working Group and implementation of the Council’s Working Group Report. The webinar also featured Dr. Leonard Jason, who discusses his recent work published in the journal of Child and Youth Care Forum on the prevalence of ME/CFS in children. The audio of the advocacy call as well as the transcript have now been posted on the NIH’s website.

To watch the webinar or read the transcript, click here. 

#MEAction Meet the Scientist: Interview with Dr. Lucinda Bateman

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A new spotlight interview featuring Dr. Lucinda Bateman was recently posted by Dylan Murphy of #MEAction. Dr. Bateman, who is part of our clinical core at Bateman Horne Center (BHC) for the JAX CRC, is the founder and Chief Medical Officer of BHC, and has treated over a thousand ME/CFS patients since 2000.

In the interview, Dr. Bateman discusses how she first got involved in treating and researching ME/CFS and what research BHC is currently doing. She also explains the BHC Biomarker Research Project and how biomarkers can help to progress the field, in addition to aiding in providing an easier path to diagnosis for patients. She also discusses the need to prioritize a trial of low dose Naltrexone as a treatment option for people with ME/CFS, and explains what Naltrexone is and how it can help patients. In terms of the lack of compassion that ME/CFS patients often experience from their healthcare professionals, Dr. Bateman says that, “the most obvious barrier to compassionate care is incomplete comprehension of the illness and its consequences. We can hope that research progress, stronger biomarkers and scientific support will start to replace this ignorance with knowledge.”

To read the article on #MEAction’s website, click here. 

Upcoming CDC ME/CFS SEC Conference Call

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On February 13, the CDC will hold an ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call to briefly update the community on the CDC’s ME/CFS efforts, followed by a live Q&A session. The conference call will specifically feature updates from Dr. Elizabeth Unger, Chief of the Chronic Viral Diseases Branch at CDC. The call will be held from 3:00 – 4:00 pm ET.

The conference call can be accessed by dialing 1-888-603-7036 and using the participant code CDC MECFS. A transcript will be made available following the call. To sign up to be notified of future calls, send an email to MECFSSEC@cdc.gov.

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

JAX Research on Immune Profiles in ME/CFS is now Available Online

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Ece Karhan, Courtney L Gunter, Stephanie Renzullo, Vida Ravanmehr, Lindsey Placek, Meghan Horne, and Peter N Robinson (top); Lina Kozhaya, Joshy George, Derya Unutmaz, Lucinda Bateman, and Suzanne D Vernon (bottom)

We are very excited to have just posted the full preprint of our new ME/CFS immune profiling paper on BioRxiv, which will continue to be updated following reviewer comment and peer-review. In this detailed study, we analyzed the immunological differences between ME/CFS patients and healthy controls within a large cohort and found several major differences in T cell subset frequencies and functions between the two groups.

Continue reading “JAX Research on Immune Profiles in ME/CFS is now Available Online”

NIH ME/CFS Advocacy Call: Video and Transcript Now Available

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On October 17, 2019, the NIH hosted a webinar to update the community on their efforts to advance research on ME/CFS. The webinar, which was live-streamed via WebEx, featured the Chair of the NANDS Council Working Group for ME/CFS, Dr. Steven Roberds, PhD, who summarized the ME/CFS research findings that the Working Group presented to the NANDS Council about a month before. The video of the webinar as well as the transcript have now been posted on the NIH’s website.

The update included details about initiatives that are currently in progress at the NIH, including the efforts that NIH is making to encourage new research topics about ME/CFS and coordinating research on overlapping conditions, encouraging general outreach as well as outreach for scientific endeavors such as conferences, setting up an inter-agency Working Group, and identifying gaps in the field. That next step that the NIH plans to take is to develop a strategic plan which clearly states the process the NIH will use to fill the numerous needs in this field.

To watch the webinar or read the transcript, click here. 

 

Solve ME/CFS Webinar Series: Amy Proal, PhD

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An interesting webinar featuring Amy Proal, PhD, of Microbe Minded was hosted a few weeks ago by Solve ME/CFS Initiative (SMCI), and the video was later posted on their Youtube channel. Amy, who was recently awarded a Ramsay grant from SMCI for her research, also published an article in Frontiers in Pediatrics in December 2018 about ME/CFS. The SMCI webinar focuses on the Frontiers article’s theory that chronic symptoms in ME/CFS are driven by the presence of persistent pathogens that affect the metabolism, gene expression, and immune system.

Amy describes how she considers ME/CFS to be a polymicrobial disease, in that pathogens associated with disease live as part of the complex microbiome communities in the body and interact with these communities to push other members of the microbiome into dysbiosis, which in turn causes symptoms. Amy believes that this can cause a snowball effect where successive infections with different pathogens build on each other to ultimately cause disease, and that this model could also explain why when presented with the same pathogen, some people develop ME/CFS while others don’t. She also discusses how recent Alzheimer’s research that explores new treatment possibilities could also be beneficial to people with ME/CFS.

To watch the SMCI webinar, click here.
To read the Frontiers in Pediatrics article, click here. 

Science perspective: Immune cells for microbiota surveillance

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Graphic: A. Kitterman, Science

JAX CRC investigators Derya Unutmaz and Julia Oh have written a Science Immunology perspective review on two exciting articles that have just been published in Science, which show very close interactions between an immune cell subtype called mucosal-associated invariant T (MAIT) cells and the microbiota. MAIT cells are a special type of T cell that are stimulated by vitamin B2 derivatives that have been produced by bacteria, and it is thought that MAIT cells control the immune response to bacterial, fungal and even some viral infections.

Continue reading “Science perspective: Immune cells for microbiota surveillance”