New NANDS Council Working Group for ME/CFS Research

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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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Scientist Advocate Spotlight: Sadie Whittaker, Ph.D.

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For our next spotlight series, I talked to Sadie Whittaker, Ph.D., the new Chief Scientific Officer (CSO) at Solve ME/CFS Initiative (SMCI). Sadie has previous experience in Biotech and Pharma, in clinical development for biologic medicines, and in strategic leadership roles for advocacy, policy, communication, and external engagement. We talked about her path through industry and into patient advocacy, her opinion on where current ME/CFS research is going, and how collaboration is the key to moving the field forward. Keep reading to learn more! 

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CNN Article about ME/CFS

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Source: CNN

In honor of “Severe [ME/CFS] Awareness Day” on August 8th, an article was published  on CNN’s website by Ryan Prior, a cross-platform associate producer at CNN and ME/CFS patient. In the article, titled “Millions suffer from an invisible disease: My ME/CFS story,” Prior details how he was diagnosed with the disease at age 16, when he was a motivated high school student busy moving towards his dream of attending college and writing Pulitzer Prize-winning stories. After becoming too ill to attend school and continuing his studies from home, Prior struggled for six months to find a diagnosis. He notes how difficult it can be to find a diagnosis and treatment for ME/CFS, saying that there are only a few dozen specialists in the United States, and often, they are far away and don’t take patients’ insurance.

In the 11 years since he was diagnosed, Prior has become a journalist and has used his expertise to advocate for ME/CFS, producing the documentary Forgotten Plague, and becoming Co-Director for the Blue Ribbon Foundation. In the CNN article, Prior says that, “despite the hardships, there are beacons of hope, with world-class scientists searching for bio-markers and new treatments.”

To read the full article on CNN’s website, click here. 

Patient Advocate Interview: Carol Isaacson Barash, Ph.D.

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In our latest “People in ME/CFS Research” spotlight, I was fortunate to chat over the phone with Carol Isaacson Barash and interview her about her extensive background in genetics ethics and scientific consulting. Carol has her own consulting company, Helix Health Advisors, and is also an ME/CFS patient and has been applying her knowledge of science and ethics to the management of her illness. Read on to learn more about her scientific background, her experiences with getting a diagnosis and treatment, and her opinion of the ME/CFS field. 

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Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting Transcripts

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The first Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting of 2018 was hosted by the US Department of Health & Human Services (HHS) on June 20th and 21st, 2018. The meeting was set in a webinar format, and the audio from the webinar was recorded and later transcribed, and is now available to the public.

The purpose of CFSAC is to find ways to improve knowledge, research, and treatment of ME/CFS, and find strategies to inform the public about ME/CFS advances. The two-day meeting, which included updates from government agencies, clinicians, researchers, and advocacy organizations, covered recent topics and news surrounding ME/CFS, and participants discussed relevant issues and important next steps for this disease.

Derya Unutmaz, our ME/CFS CRC director at Jackson Labs, was one of the webinar presenters. He gave an overview and background of the research focus here. He also presented updates on science and our community outreach efforts.

To listen to the audio or read a transcript of the webinar, click here. 

The microbiome-immune collaboration with Columbia ME/CFS Center

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Simon McGrath has written a very nice blog article on study plans from  W. Ian Lipkin and his Collaborative Research Center for ME/CFS at Columbia University.  In the article, Simon discusses how the Columbia CRC will use novel approaches to see if dysbiosis in the gut microbiome is causing changes in ME/CFS patients that could be creating their illness. The scientists in Dr. Lipkin’s group aim to determine the types of bacteria present in the gut microbiome of ME/CFS patients, and also will be measuring the metabolites produced by the bacteria present there to see how they differ from healthy controls. The CRC also hopes to link any changes they see in the microbiome of patients to changes in the immune system. Our group here at JAX initiated a collaboration with Dr. Lipkin’s Center and will be performing high resolution profiling and functionality of immune cells in the same patients. It will thus be very interesting to determine how the immune system is linked to the microbiota through these ME/CFS Center collaborations.

To read the full article on ME/CFS Research Review blog, click here.