Happy Holidays and New Year!


Happy Holidays from everyone here at the JAX ME/CFS CRC! We wish peace, love, and happiness to all of the ME/CFS community and their loved ones.

We are counting our blessings from this past year, and are thankful for your constant participation and unending support of our scientific endeavors. We are working for a better world for patients suffering from ME/CFS, and are hopeful that 2018 will bring many new ideas and discovery, as well as a promise for a brighter tomorrow. May you find that the New Year brings you new inspiration, new achievements, and a whole lot of new happiness.

From us to you, Happy Holidays and a wonderful New Year!

NIH ME/CFS Telebriefing Review

On November 28, the NIH held their third public telebriefing of 2017 to share new research with the ME/CFS community. The community heard an update from Dr. Avindra Nath about the NIH Intramural Study, who said that patients are currently being recruited to the study.  Dr. Derya Unutmaz also gave a background on how he became involved in studying ME/CFS and what drives his enthusiasm. Derya explained that his two major goals for the NIH CRC are to find the molecular biological correlates to link ME/CFS biology to its symptoms, and to understand the disease mechanisms.

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UNREST Viewing by JAX CRC Members

UNREST-1-master768“Jennifer Brea is an active Harvard PhD student about to marry the love of her life when suddenly her body starts failing her. Hoping to shed light on her strange symptoms, Jennifer grabs a camera and films the darkest moments unfolding before her eyes as she is derailed by [ME/CFS], a mysterious illness some still believe is ‘all in your head,’” (https://www.unrest.film).

JAX ME/CFS CRC collaborators and lab members held a private viewing of Unrest, a world-premiered documentary by Jennifer Brea from the 2017 Sundance Film Festival. Attendees hoped to better familiarize themselves with what ME/CFS symptoms actually look like, and how patients cope with them on a day-to-day basis. Brea’s portrayal of her own ME/CFS illness serves as striking evidence to the damage that this disease can cause, both to the patient as well as to their family.

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JAX CRC Site Visit by Alison Motsinger-Reif, Ph.D.

We were very pleased to host Alison Motsinger-Reif, Ph.D., a JAX CRC collaborator from North Carolina State University (NCSU) on December 1, 2017 at The Jackson Laboratory for Genomic Medicine in Farmington, CT. Alison is an Associate Professor at NCSU and does exciting research on developing computational methods to detect genetic risk factors of common, complex traits in human populations.

Alison will be taking the lead with the Biostatistics aspect of the ME/CFS project. She has a background in human biology and is passionate about methods development in her research. During the visit, Alison met with all of the JAX CRC collaborators to discuss various aspects of the ME/CFS project. Alison also presented her recent exciting work on finding links between  genetics and the effectiveness of cancer drugs. She highlighted her current projects, which determine the variability in individual genetics and the responses to drugs and chemical exposure by using genetic association mapping. She hopes to find predictors of individual response to these types of exposures, as well as dissect underlying mechanisms of differential response. Continue reading “JAX CRC Site Visit by Alison Motsinger-Reif, Ph.D.”

Norwegian Rituximab ME/CFS Trial Fails

“Over the past five years or so, Rituximab has been the great hope for the ME/CFS community. The anecdotal stories of dramatic recoveries were beyond enticing. A successful trial could ultimately have led to the first FDA-approved drug for ME/CFS and relief for many, a huge shift in how the disease is viewed, and surely more research funding.

That unfortunately is not to be. At a talk in Norway on Nov 21st, Dr. Mella revealed that the Rituximab trial that many laid their hopes on has failed. We don’t know and won’t know the details of the failure until the paper is published next year, and Drs. Fluge and Mella talk more about the study.  Dr. Mella said they provided the result so that ME/CFS patients won’t try the drug on their own…”

Read more at Simmaron Research 

JAX CRC Site Visit by Mass CFIDS

It was wonderful to host eight representatives from the Massachusetts CFIDS/ME & FM Association (Mass CFIDS) at JAX on November 17, 2017. Mass CFIDS is an advocacy organization dedicated to meeting the needs of patients with ME/CFS and their families. The group provided valuable insight and suggestions to members of the Collaborative Research Center (CRC).

President of Mass CFIDS, Charmian Proskauer, was in attendance with her husband Alan Gurwitt, a retired child psychiatrist and ME/CFS patient. They were joined by Elizabeth Potter, Acting Vice President of Mass CFIDS and ME/CFS patient, as well as several patients and advocates to represent families of local patients suffering from this debilitating illness.

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