BHC: Second Annual Meeting for ME/CFS Clinician Coalition

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Source: batemanhornecenter.org

Batmen Horne Center (BHC), our clinical core for the JAX CRC, recently held their second annual ME/CFS Expert Clinician Summit in Salt Lake City, UT. ME/CFS clinicians from all around the United States attended, hoping to grow a collaborative network of disease experts and identify ways to improve clinical care for patients suffering from ME/CFS. ME/CFS is quite common, affecting between 1 to 2.5 million Americans, yet many people with the disease remain undiagnosed or struggle to get appropriate clinical care because of harmful treatment recommendations and physicians who don’t understand ME/CFS or how to properly manage it.

The clinicians who attended the summit hope to bridge this gap in understanding by reaching consensus on clinical practices, and sharing this information on a new website so that it can reach clinicians everywhere. It is especially important to reach clinicians who are just beginning to develop expertise in treating ME/CFS, as many of the current specialists are nearing retirement age, and new clinicians are needed in the field. This effort is being led by advocate Mary Dimmock and Dr. Lucinda Bateman, who says that, “it was an honor to meet again with the ME/CFS experts to share knowledge, collaborate and seek consensus regarding our core messages and aspects of this illness. Our individual goals are varied, but we learn from each other, and hope to weave the common threads together into strong advice for clinicians, and forward progress toward much needed treatment trials.”

To read about the Summit on Bateman Horne Center’s website, click here. 

The Jackson Laboratory: Perspectives on ME/CFS

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The Jackson Laboratory has just released a new launch page on their website about ME/CFS, with the hope of increasing awareness about the disease. The page includes links to recent feature articles, including one from February 2019 that highlights the JAX CRC that’s being led by Derya Unutmaz, MD, and a Q&A with Courtney Gunter from earlier this month about the importance of science communication, especially with ME/CFS. There are also new videos that offer more information from the perspectives of the physician, the researcher, the caregivers, and the patient, as well as calls to action for donations to support ME/CFS research.

Check out the ME/CFS section of JAX’s website here. 

NIH Accelerating Research on ME/CFS Meeting

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On Thursday April 4 and Friday April 5, 2019, NIH will be hosting the Accelerating Research on ME/CFS meeting in Bethesda, MD. The two-day meeting, which has the goal of driving the ME/CFS research field forward by identifying gaps and opportunities through presentations of newer research, will be webcast and made publicly available. Experts as well as newcomers in the ME/CFS field will be presenting their research, and there will also be several panel discussions. From Jackson Labs, Derya Unutmaz, MD, will present on the link between the microbiome and immune system, and Julia Oh, PhD, will also discuss the importance of the microbiome in ME/CFS. Dr. Lucinda Bateman of Bateman Horne Center (BHC), will talk about orthostatic intolerance as part of a clinician panel. There will also be a group discussion Q&A moderated by Terri Wilder of #MEAction.

The day before the conference, on April 3, 2019, NIH will also host a workshop for young/early career ME/CFS investigators, called Thinking the Future. Attendees will learn key networking and grant writing skills, listen to a panel of non-profit funders, and give presentations on their own ME/CFS research ideas. Attendees will also have the opportunity to participate in a poster session at the first day of the Accelerating Research on ME/CFS meeting on April 4th.

To register for the Accelerating Research on ME/CFS meeting, click here. 
To learn more about the Thinking the Future workshop, click here. 

Perspective: Life on the front line of ME/CFS research

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Courtney Gunter; source: jax.org by Charles Camarda

A new perspective spotlight article has just been posted on the Jackson Laboratory website about Courtney Gunter, the JAX ME/CFS Collaborative Research Center’s Program Manager. Courtney was interviewed to learn more about her role at the Center, including how she became interested in ME/CFS research, why the JAXMECFS blog was started, and what it’s like to run it. The interview also covers what her thoughts are on the current state of the ME/CFS field, and which blog posts were her favorite to write.

To check out the article on JAX’s website, click here. 

ME/CFS Continuing Medical Education (CME) Program Released by BHC

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Dr. Lucinda Bateman of Bateman Horne Center has recently helped create free online Continuing Medical Education (CME) programs about ME/CFS for medical providers, and they’re now available. These projects were the result of collaborations with the CDC and Medscape, and with the Michigan State Medical Society web page and PANDORA, a group of patient advocates. BHC is dedicated to improving education about ME/CFS for medical providers, which is critical for both patients and for research initiatives, and these CMEs are just one effort they’re focusing on to increase the number of informed providers.

Click here to visit BHC’s medical provider page, where the CME links are available. 

JAX Feature Article: Solving the Mystery of [ME/CFS]

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Source: jax.org

The Jackson Laboratory has just released a new feature article about ME/CFS on their website to increase awareness about the disease. The feature article, which highlights the recently established JAX CRC that’s being led by Derya Unutmaz, MD, delves into some of the issues that patients face in receiving diagnosis for the disease and in finding doctors who will give them proper care to manage their symptoms, and also includes details about how the microbiome and immune system are being studied by the CRC to determine the root cause of ME/CFS.

Continue reading “JAX Feature Article: Solving the Mystery of [ME/CFS]”

Survey for Columbia CRC ME/CFS App Development

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The Center for Solutions for ME/CFS at Columbia University, one of our partner CRCs funded by NIH to accomplish ME/CFS research, is designing a mobile device app called “my/MECFS.” The app, which would allow ME/CFS patients to report on their symptoms and on activities and events that might affect symptoms, is currently being designed. To aid in the design of the app to ensure that it provides meaningful information to patients, researchers, and health professionals, and is also easy to use, Columbia is seeking input from people with ME/CFS and knowledgeable health professionals in a new survey. The survey should take 10 minutes or less to complete, and will help determine what features  should be a priority for the app.

To complete the survey, click here.