Now that the Severely Ill-BIG DATA Study is underway, we want to perform multiple investigations at the same time. So, we are continuing the momentum. Just this week, we gratefully received $350K from an anonymous donor who had previously donated $40K as well as many additional donations from our supporters.Let’s do this!
In the Midst of Blood Draws- Research Update
We’re making progress in the Severely Ill-BIG DATA Study, with over 2/3 of the planned blood draws already completed. After a sample is drawn, it is sent off for clinical tests, and portions are held for research tests to be run together in batches with other samples. In the last month, we’ve updated the list of tests/panels we are conducting and included the names of the labs where the tests are being run.
After all blood draws are done on these severely ill ME / CFS patients (estimated end of May 2016), we will complete the testing and begin the analysis.Testing and analysis is expected to take 8-10 months.
New Computer Program Being Created
So many data points will need to be analyzed in the Severely Ill-BIG DATA Study—literally millions and millions—that we are creating a unique computer program to analyze all the data. This new program will be able to process and compare the huge amount of data to find the biological abnormalities that the 20 severely ill patient subjects have in common and compare them with control subjects. It truly is a “BIG DATA” study. This system will be developed by Wenzhong Xiao and his teams at Harvard University and Stanford University.
We hope to then test for the same abnormalities in patients with other diseases and ME / CFS patients who have moderate or even mild cases of ME / CFS and begin working to find effective treatments.
With an expanded data platform, we will be able to ask and answer the following questions (and many others):
How do ME / CFS patients’ particular biological test results compare with or differ from healthy people and with people with other diseases?
Does ME / CFS have a biological footprint, do distinguishable subset of the disease exist, and how do ME / CFS patients compare to healthy people or people with other diseases?
Will some treatments for other diseases with similar symptoms also work on ME / CFS?
Our systematic, step-by-step process is with the goal of identifying diagnostic biomarkers and targets for treatments.
An added benefit of this computer program is that the patients’ de-identified data will be stored as quickly as possible in a format that can be openly shared with other researchers to test their hypotheses, which will expand the scope and impact of the original study. Our aim is to make this useful to as many scientists as possible.
London, Here We Come!
The 2016 Invest in ME Conference and 2016 Biomedical Research into ME Colloquium will include two representatives from our organization. Our ME / CFS Scientific Advisory Board director, Ron Davis, PhD, will be speaking at both events. The research colloquium is by invitation only. So we are honored that, along with Dr. Davis, our executive director, Linda Tannenbaum, will attend this event, which is scheduled for the two days before the conference. We look forward to finding more collaboration opportunities, sharing news about our research and learning about the research of others.
New Board Members Bring Important Experience
In the last month, we have added two esteemed experts to our ME / CFS Scientific Advisory Board. Dr. Robert Naviaux, MD, PhD, is recognized for research advancements in the fields of mitochondria and metabolism disorders. Previous research has brought up the possibility that mitochondria and metabolism dysfunctions could be contributing to the ME / CFS pathology. This is why we are excited to have Dr. Naviaux join our team. You’ll find his list of accomplishments interesting.
More recently, Dr. David S. Bell, well-known for his dedication to ME / CFS patients and his knowledge of the disease as a Lyndonville, New York, clinician (now retired), accepted our invitation to join our ME / CFS Scientific Advisory Board. Dr. Bell’s experience of identifying the original ME / CFS outbreak (mostly pediatric cases) in Lyndonville and treating adults for over 30 years gives him rare insights and makes him a perfect fit for our team. We invite you to watch a recent presentation where he tells of the many things he has learned about the disease in his decades of providing health care for them and his in-depth description of pediatric ME / CFS.
Funding Milestone Reached
Thanks to all the generous donations—from individuals and organizations, both small and large—we have raised over $4.3 million for ME / CFS research since our 2012 beginnings. We have made announcement after announcement in recent months as momentum is building and will continue to do so as we move ahead to End ME / CFS and find answers to understand similar illnesses.
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Collaborating to Fast Track Answers
To support collaborative medical research to find effective treatments and diagnostic markers
To communicate, engage and inform the patient community.
To help drive & support scientific meetings for continued global collaboration.
A Word from our Executive Director:
We are extremely grateful to our supporters and donors, members of our scientific advisory and foundation boards and our volunteers that are making this urgent research a reality. Our plan is to be open with results, share the data, collaborate and encourage research on a global scale. We plan to perform additional research projects this year while the Big Data study is continuing. Thank you all for reading our newsletter and being a part of the solution.
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