Survey for Columbia CRC ME/CFS App Development

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The Center for Solutions for ME/CFS at Columbia University, one of our partner CRCs funded by NIH to accomplish ME/CFS research, is designing a mobile device app called “my/MECFS.” The app, which would allow ME/CFS patients to report on their symptoms and on activities and events that might affect symptoms, is currently being designed. To aid in the design of the app to ensure that it provides meaningful information to patients, researchers, and health professionals, and is also easy to use, Columbia is seeking input from people with ME/CFS and knowledgeable health professionals in a new survey. The survey should take 10 minutes or less to complete, and will help determine what features  should be a priority for the app.

To complete the survey, click here. 

Frontiers: Machine Learning to Estimate Prevalence, Demographics, and Costs of ME/CFS

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A new study in Frontiers in Pediatrics has used machine learning to look at a large medical claims database to determine the prevalence, gender demographics, and costs for individuals living with ME/CFS. Since ME/CFS is such a heterogeneous disease, there is a lack of diagnostic testing and confusion about how to code the disease, making it difficult for an individual to be diagnosed. This also makes it problematic to estimate other aspects of the disease, such as prevalence, but this study offers a new approach to this problem by using machine learning to look at characteristics of patients who have been given a diagnosis code for ME or CFS to makes these estimates.

Continue reading “Frontiers: Machine Learning to Estimate Prevalence, Demographics, and Costs of ME/CFS”

New MECFSnet Website for the ME/CFS CRCs

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The ME/CFS Collaborative Research Centers (CRCs) have a new Website!  The site that just went live aims at informing the community about the ongoing research at the three CRCs, or ME/CFS Research Network (MECFSnet), and was developed by the Data Management Coordinating Center (DMCC). There are features and information about the research projects happening at Columbia University, Cornell University, and The Jackson Laboratory. We hope that it will be updated frequently and welcome the feedback of the ME/CFS community.

Click here to visit the new MECFSnet website! 

Happy Holidays and New Year!

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Happy Holidays from everyone here at the JAX ME/CFS CRC! We believe 2018 has been a landmark year for pushing forward with advances in #MECFS research. We are very excited about the progress that has been made, and look forward to the next year for generating novel findings and collaborations with the other Centers and scientists.

We are especially thankful for the community’s unwavering participation and support of our scientific endeavors over this past year. In the first year of research at the ME/CFS Center at JAX, we have actively worked with our clinical partners at Bateman Horne Center to recruit individuals with ME/CFS and healthy controls, and to date we have collected both blood and stool samples from dozens of patients who were recruited to the study. We have processed all of these biological samples for immune profiling, microbiome, and metabolism data analysis for biomarker discovery in our labs, which has been a labor of love and passion! Our collaborations with the Cornell and Columbia ME/CFS Centers are also running at full speed. We are working on the same set of samples across the three sites and contributing our respective strengths to our studies, and we believe that this will generate the most comprehensive biological dataset to date on ME/CFS patient samples.

We are even more hopeful now that our progress will continue to accelerate into 2019 and bring many new ideas and inspiration, as well as a promise for a brighter tomorrow for all those who are suffering from this terrible disease. We wish that all of the ME/CFS community and their loved ones be blessed with laughter, peace, and love. May the magic and the wonder of the holiday season stay with you throughout the coming year, and the New Year bring you new achievements, joy, and maintain your hope, because failure is not an option!

Happy Holidays and a wonderful New Year!
– the JAX ME/CFS team, Derya Unutmaz, and Courtney Gunter

Microbial Growth Rate and its Potential Link to Human Disease

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Julia Oh, source: jax.org

It’s possible to use metagenomic shotgun sequencing to look at complex microbial communities and see what types of microbes are present there, as well as their functions. However, sequencing does not give information about how quickly different species of bacteria within the community are growing. Microbial growth rates change based on different environmental conditions, give information about which microbes may be active contributors to community phenotypes, and can even be associated with multiple disease characteristics, so this information would be highly useful for assessing the effect of different microbes on human health. However, existing techniques to determine microbial growth rates have been difficult to utilize, and have important limitations.

Continue reading “Microbial Growth Rate and its Potential Link to Human Disease”

BHC Blog Post: Bateman Horne Center’s Journey

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Source: Bateman Horne Center

Last week, our clinical core at Bateman Horne Center (BHC) posted an update on their blog about the progress that their clinic has made over the past four years. BHC is a nonprofit organization that is dedicated to treating ME/CFS and Fibromyalgia patients. They are also focusing on becoming a Center of Excellence, where in addition to offering on-site care to patients, they also have a clinical research team, participate in community outreach, and offer educational and other social services.

BHC recently added two new physicians to their team, and are therefore able to further increase their capacity for treating and researching ME/CFS. The blog post introduces the new physicians and gives information about their backgrounds. It also outlines BHC’s new goal for 2019, which is to raise funds to launch Project ECHO (Extension for Community Healthcare Outcomes), which will provide tele-medicine services to support community-based physicians.

To read the blog post and watch a video about BHC’s journey on their website, click here. 

Solve ME/CFS Webinar Series: Sadie Whittaker, PhD

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Solve ME/CFS Initiative (SMCI) has a regular free Webinar Series, which has 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. On December 6, 2018 at 10 am PT, SMCI’s Chief Scientific Officer (CSO), Sadie Whittaker, will be participating in the series.

Sadie’s webinar, titled “You + M.E.: A community resource, built by the community,” will focus on the SMCI Biobank and the redesign of its current process, plus their new patient registry. These are resources that SMCI hopes will reflect the needs and priorities of individuals suffering from ME/CFS. Participants can register for the webinar on SMCI’s website, as well as send in questions ahead of time that will be asked during the webinar.

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