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. 

Continue reading “Patient Advocate Interview: Carol Isaacson Barash, Ph.D.”

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.  

Insights into [ME/CFS] Phenotypes through Comprehensive Metabolomics

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A recent study in the journal Scientific Reports from Dr. W. Ian Lipkin, who is the Principal Investigator for the Columbia ME/CFS Center, has new metabolic and microbiome findings that could lead to the development of a diagnostic biomarker for ME/CFS. The article, titled “Insights into myalgic encephalomyelitis/chronic fatigue syndrome phenotypes through comprehensive metabolomics,” details the analysis of plasma metabolomic, fecal bacterial metagenomic, and clinical data from 50 ME/CFS patients and 50 healthy controls. Metabolomics, which is the study of metabolites, or the end products of cellular processes, can give insight about the physiological state of the body, and how it is functioning.

The group analyzed 562 different molecules of the metabolome in subject blood samples using mass spectrometry, and then linked that data to fecal metagenomic data and clinical data. When all of the data was combined, the group was able to develop a predictive model for ME/CFS diagnosis with a 0.836 score, or an accuracy rate of 84 percent. In an article by Medical News Today about the study, first author Dr. Dorottya Nagy-Szakal is quoted, saying, “this is a strong predictive model that suggests we’re getting close to the point where we’ll have lab tests that will allow us to say with a high level of certainty who has this disorder.”

Solve ME/CFS Initiative Webinar Series: Derya Unutmaz, M.D.

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Source: solvecfs.org

On July 19th, Derya Unutmaz will participate in the Solve ME/CFS Initiative (SMCI) Webinar Series, a free series with the purpose of educating patients, researchers, and healthcare providers about ME/CFS. The webinars are held several times per year, and are live-streamed and later uploaded to Youtube for the community to watch. Derya’s webinar, titled “Crossroad of the Immune Response and the Microbiome: Impact on ME/CFS,” will provide an overview on how the microbiome can impact the immune system, and how dysbiosis of the microbiome could cause a perturbation of this interaction, contributing to the pathophysiology of ME/CFS. Participants can register for the webinar on SMCI’s website, and can then send in questions ahead of time that will be asked during the webinar.

To register for the webinar on SMCI’s website, click here. 

Advocate Spotlight: Charmian Proskauer

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We are pleased to present Charmian Proskauer, an ME/CFS advocate and former cell biologist and website manager, in the latest “People in ME/CFS Research” spotlight. Charmian is the President of the Massachusetts CFIDS Association, and has participated in many advocacy initiatives at both the state and federal levels as part of the organization. She is also the Chair of the US Action Working Group, and participates in some of the working groups for Chronic Fatigue Syndrome Advisory Committee (CFSAC). Charmian  and a group of patients and advocates from Mass CFIDS visited Derya and me at Jackson Labs several months ago, where they provided us with valuable insight. Keep reading to find out more about how Charmian began advocating for ME/CFS, and some of the latest initiatives she’s involved in. 

Continue reading “Advocate Spotlight: Charmian Proskauer”