Bateman Horne Center Article: BHC Strives for Excellence

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Bateman Horne Center (BHC), located in Salt Lake City, UT, just published a new article about their rigorous 3.5-year strategic plan to become a center for excellence for ME/CFS and Fibromyalgia (FM). BHC, a specialized medical center focused on treating patients with ME/CFS and FM, and our clinical core for the JAX ME/CFS CRC, is intent on improving the lives of patients and therefore is focusing on a three-phase plan to engage patients in research to further the field, educate healthcare providers to improve clinical care for patients, and focus on targeted clinical trials to address the heterogeneity of ME/CFS and FM. According to their mission statement, they “envision a world where patients with ME/CFS and Fibromyalgia (FM) are readily diagnosed, effectively treated, and widely met with empathy and understanding.”

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

ME/CFS Physician Spotlight: Morris Papernik, M.D.

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In our latest “People in ME/CFS Research” spotlight, I was fortunate to visit Dr. Morris Papernik at his nearby clinic in Connecticut and interview him about his decades of clinical experience with ME/CFS patients. Dr. Papernik has been treating ME/CFS and Fibromyalgia patients for over thirty years, has served on the Chronic Fatigue Syndrome Advisory Committee (CFSAC), and we are very excited about the prospect of collaborating with him soon here at Jackson Labs for the ME/CFS CRC project. Read on to learn more about his background, his methods for diagnosis and treatment, and his opinion of the ME/CFS field. 

Continue reading “ME/CFS Physician Spotlight: Morris Papernik, M.D.”

JAXtaposition: Decoding Chronic Illness

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Source: Charles Camarda, for jax.org.

On June 14, Derya Unutmaz gave a seminar talk for the Jackson Laboratory’s new speaker series, JAXtaposition: Cures Can’t Wait. The series, which is open to the public and features TED-style talks from faculty and senior leadership on the cutting-edge programs and research at JAX, focuses on a variety of important health topics, including cancer, addiction, and rare diseases, among others. Derya’s talk centered on the topic of chronic illness, and was focused specifically on ME/CFS.

In an article written about the event, Maggie Moore outlines Derya’s research plans for figuring out what causes the disease, and quotes him as saying, “we’re sequencing thousands of species of bacteria. We’re determining hundreds of different populations of immune cells in the same person. We’re also analyzing their metabolism and thousands of different metabolites in their blood. We’re trying to put the patient’s biology back together.” Derya believes in the importance of treating the patient rather than the disease, and says that in the context of understanding overall health, researchers are realizing that instead of keeping each of the body’s systems separated into unique areas of interest, we should integrate all of these systems back together to see the whole picture.

To read the article about Derya’s talk on JAX’s website, click here. 

Scientist Spotlight: Alison Motsinger-Reif, Ph.D.

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In our latest “People in ME/CFS Research” spotlight, I interviewed Alison Motsinger-Reif, Ph.D., an Associate Professor in Statistics at North Carolina State University, and the Biostatistics Lead for the JAX ME/CFS CRC. Alison has an interest in computational genetics, pharmacogenetics, and epistasis, and will be combining all of the microbiome, immune profiling, and metabolome data for the ME/CFS project into an interactome, where she can figure out which variables are relevant to the disease. Read on to learn more about her background, research plans, and how she got her start in science with Derya. 

Continue reading “Scientist Spotlight: Alison Motsinger-Reif, Ph.D.”

June 20-21, 2018 CFSAC Meeting (Webinar)

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On June 20th and 21st, the US Department of Health & Human Services (HHS) will host its first Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting of 2018. CFSAC meetings occur twice per year, and the two-day meeting is set in a webinar format, including updates from government agencies like the CDC and NIH, as well as updates from advocacy organizations Simmaron Research, MEAction, and Massachusetts CFIDS, among others. Clinicians and researchers will speak as well, and this meeting will include Dr. Lucinda Bateman of Bateman Horne Center, who will give an update on the Medical Education Work Group, and Dr. Derya Unutmaz of Jackson Labs, giving a Research Update on Adult ME/CFS.

Participants can call in to listen to the webinar and watch a livestream of the meeting, and can ask questions of the speakers. The purpose of the meeting is to cover the recent topics and news surrounding ME/CFS, and determine important next steps in finding the causes of and treatments for this disease.

Click here for the meeting agenda, and for information on calling in to participate. 

 

Patient Advocate Spotlight: Alan Gurwitt, M.D.

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Source: ME/CFS Alert Youtube

We are pleased to present Alan Gurwitt, M.D, who is an ME/CFS patient, advocate and  physician, in the latest “People in ME/CFS Research” spotlight. Dr. Gurwitt has a background working as an adult and child psychiatrist, and has been suffering from a mild case of ME/CFS for over 30 years. He also previously served as the President of the Massachusetts CFIDS Association, and has participated in countless advocacy initiatives over the years as a member of the organization. Dr. Gurwitt had visited Derya and me at Jackson Labs several months ago with a group of patients and advocates from Mass CFIDS. Keep reading for the full interview! 
Continue reading “Patient Advocate Spotlight: Alan Gurwitt, M.D.”

NY State Department of Health: New Webpage about ME/CFS

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The New York State Department of Health recently established a new webpage about ME/CFS, which is current as of May 2018. Local advocates, including Mary Dimmock and Terri Wilder, worked to create a webpage that allows for a basic understanding of ME/CFS and which also corrects the common misconceptions about the disease. The page not only outlines the symptoms, diagnosis, and current treatment options for the disease, but it also says that cognitive behavioral therapy (CBT) and graded exercise therapy (GET) are harmful to patients, explaining in bolded letters that ME/CFS “is not a psychiatric disorder and it is not caused by a lack of exercise, contrary to common belief. 

The participants plan to view the webpage as a “live” document, and will update it periodically as needed to include new information that is found about the disease. Global patient advocacy organization #MEAction also participated in deciding what information should be included, and a blog post on their website about the new webpage says that there is potential for the page to reach a very wide audience. They quote Wilder, who says, “it’s about getting people to understand that this is a public health issue and a social justice issue.”

To read the Ny State Department of Health webpage on ME/CFS, click here.