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. 

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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! 
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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. 

Bateman Horne Center Article: Building Communities of Understanding and Hope

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Source: Bateman Horne Center

Bateman Horne Center (BHC), our clinical core in Salt Lake City, UT, recently posted an article about how patients suffering from ME/CFS and Fibromyalgia often experience social isolation and profound loneliness, which are detrimental to physical, mental, and emotional well-being. One of the best strategies to combat loneliness is to attend support groups, which give participants a community they can depend on for emotional support and understanding.

BHC offers two support groups each week with psychologist Liz Sherlock, PhD in Salt Lake City, with one geared towards patients and the other for caretakers. However, in-person meetings are not always feasible for patients and caretakers to attend, so the article also gives guidance about what criteria someone should use to choose an online support group. Many online support groups are a great alternative to in-person groups, and will also provide people with much-needed support, understanding, and coping strategies.

To read the article and see a list of online support groups on BHC’s website, click here. 

Approaches in Biomedical Research: The Microbiome, Part 1

We are excited to present our second educational series on explaining our approaches in biomedical research. This series will focus on the microbiota (commonly called the microbiome), which is the community of microbes, including bacteria, fungi, and viruses, that lives everywhere on the inside and outside of humans.

Why do these organisms matter to us? The bacterial community in our gut is extremely important to our health, as these bacteria help us break down our food, make chemicals that affect our moods, and train our immune system to tell the difference between good bacteria and the bad, disease-causing ones that should be destroyed. The composition of the gut microbiota is somewhat different in each person, but there are certain species of bacteria that are seen in most people and known to be good for our health, and others that we know can be bad for our health if they grow to outnumber the good bacteria (figure 1). When the amounts of good and bad bacteria are thrown off-balance, this is known as dysbiosis, and has been linked to many diseases.

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Patient Advocate Interview: Jennifer Brea

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Source: Shella Films

We are very excited to present our next “People in ME/CFS Research” spotlight this week, which is my interview with patient and advocate Jennifer Brea! Jen is a documentary filmmaker who directed Unrest, a film about her experience with ME/CFS, which has received  worldwide acclaim and brought much needed recognition to this disease. She also co-founded #MEAction, a global network for ME/CFS patients and their caregivers and doctors. Recently, Jen received ProHealth’s “2017 ME/CFS Patient Advocate of the Year” award. I was able to chat with her over the phone to learn more about her motivation for making Unrest, the response it has received, and her views of the ME/CFS field. Keep reading for the full interview! 

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