Zaher Nahle said:I am thrilled to share with you that the Solve ME/CFS Initiative has received a coveted award from the Robert Wood Johnson Foundation (RWJF) and Genetic Alliance to boost our BioBank services and create a sophisticated Patient Registry for ME/CFS.
This grant award will make it possible for us to launch a truly national, state-of-the-art patient registry for the disease, which remains an unmet and urgent need in the community. You can read more about the award in this issue, and we’ll be providing updates as we roll out this new portal in the months ahead.
On the topic of research improvements, I am always encouraged when there is a new investment from the NIH in ME/CFS, as they recently conveyed in their Notice of Availability of Administrative Supplements on ME/CFS.
According to the NIH, the Administrative Supplements “are intended to expand existing research on ME/CFS, or utilize and apply a new technology to study ME/CFS through supplements to NIH-funded grant awards.” While this effort by the NIH to “bolster research on ME/CFS” is promising, it is perhaps better on paper than in practice...
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