Today, the Open Medicine Foundation announced that it had funded a new ME/CFS Collaborative Research Center at Harvard under Ron Tompkins and Wenzhong Xiao, to the tune of $1.8 million dollars.
The Center will include with Massachusetts General Hospital (MGH), Brigham and Women’s Hospital, and Beth Israel Deaconess Medical Center.
There are two main goals for the project.
The first is to collect molecular data on muscle and other tissues affected by ME/CFS. Studies will include evaluation of patient muscle biopsies as compared to controls, examining genomics, proteomics, and ultrastructural analysis. The new Center hopes to use this information in part to uncover the etiology of post-exertional malaise.
The second goal is to establish a Clinical Trials Network to facilitate multi-center clinical studies on potential effective treatments for ME/CFS. By interfacing with multiple hospitals, the Harvard Collaborative Center will have access to a significant number of patients.
Stanford ME/CFS Data Management and Coordination Center:
OMF is also funding the expansion of the Stanford Data Center for the Severely Ill Patients (SIPS) Study to encompass all the data from the Stanford and Harvard ME/CFS Collaborative Research Centers.
The clinical results from the SIPS are currently open to researchers. This expanded data center will give researchers quick access to even more research data.
National Institutes of Health: It’s Your Move
NIH should be funding centers like these, but chose last year to only fund three CRCs. They are not funding a single clinical trial for ME, let alone a clinical trial network. With OMF footing the bill for one year’s operation, what’s to stop the NIH from funding years two through five?
It’s past time for the National Institutes of Health to invest in the future of ME research, before another generation is lost to this disease.
#MEAction UK will be sending a representative to the NICE roundtable discussion on the final ME/CFS guideline, and have had a pre-meeting with NICE to raise our concerns about the delay to publication.