In 2017, the NIH announced their funding of The Jackson Laboratory (JAX) for a Collaborative Research Center (CRC) grant for studying ME/CFS. Derya Unutmaz, MD, an immunologist whose research focuses on understanding how the human immune system functions and is perturbed during chronic disease, is the Program Director for the project. Associate Director is Julia Oh, PhD, who studies the impact of the human microbiome on health and disease.
The main goal of the JAX CRC project is to understand how the immune system, microbiome, and metabolome are connected and disrupted in ME/CFS, and to discover the biological basis of this chronic disease. We are hopeful that the knowledge gained from these studies will help to develop molecular markers for the diagnosis of ME/CFS, and the development of new treatments based on these new targets discovered.
I am the Program Manager and Patient Advocacy and Outreach specialist for the JAX Center. To engage and enhance our interaction with the ME/CFS patient and advocacy community, Derya and I have recently started a blog at jaxmecfs.com, with the goal of chronicling the research at the JAX CRC for ME/CFS, as well as the ongoing research around the world. We post interviews with researchers and advocates that we collaborate with, and we have educational posts about the scientific methods being used in our project. We also intend to provide links and information on the progress being made by our Center and other researchers in the ME/CFS community.
We hope that this blog will give us the important opportunity to engage with the ME/CFS community and receive feedback from patients and advocacy groups about our efforts to find solutions for this disease.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the