Open Medicine Foundation Announces Harvard Collaborative Research Center

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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.

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2 thoughts on “Open Medicine Foundation Announces Harvard Collaborative Research Center”

  1. So true, we cannot do it without support of NIH…please keep them under pressure. My children need me, I can’t cook a meal for them, spending a day with them is impossible. That is so wrong…please keep fighting. I am supporting you all I can and will continue to do so.

  2. Susan Hagaman

    After gradual onset of M.E./Cfids as it is labeled in the USA, I received extensive testing for dx at one of existing ‘clinics’ for those w/similar complex symptoms; Brain/Pain/Fatigue were the top 3, to varying degree & order. My source to find a doctor was a book store ‘health’ section. After the Incline Village, NV outbreak, there ere a few specialists who chose to report their pts’ clustered there to CDC….who did a quick investigation and imo, labelled this serious, disabling ‘syndrome’ chronic fatigue, which placed it in a category w/lss funding for research than most other emerging illnesses. Even MS, multiple sclerosis, was slowly accepted as affecting many in this country….it being initially as consisting of mostly women who they said had hysteria. its a recognition, long anticipated for M.E. Wish the ‘fatigue’ name would be permanently deleted. Have continued to encounter my new providers who tell me ‘M.E. is not a dx when I use it….that it is ‘chronic fatigue’ and they write it on my new pt. records. Is it any wonder that pts grow weary, discouraged that their life is not valued?! Thank you or addressing new serious research

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