Solve ME/CFS Initiative (SMCI) submitted a unique and pointed response to this RFI. From one research organization to another, SMCI used the opportunity to articulate its vision for an ideal research opportunity from the NIH. SMCI submitted a sample funding opportunity announcement (FOA) addressing the key elements that have been absent or underfunded in ME/CFS research. This imitation FOA was presented utilizing the formatting and language of the NIH itself. In replicating the NIH’s own FOA form, SMCI highlighted the dire need for research funding and seeks to encourage discussion of the NIH’s responsibility to further ME/CFS studies.

SMCI’s submission includes discussion on the following topics:

Interdisciplinary research and biomarkers

Bioenergetics

Neuroendocrine systems

Immunity and inflammation

Epidemiology and diagnosis

Physiological interactions

Treatment and quality of life

Methodological considerations

Funding support and timelines

To read SMCI’s full RFI submission, please click here.

According to the NIH, “The members of the Trans-NIH ME/CFS Working Group will review and consider the comments received under this RFI with regard to current and future needs and direction for ME/CFS research and research training.”

While the government is under no obligation to respond, the ME/CFS community can likely expect a public statement regarding the results of this RFI in late 2016.

Please note that SMCI’s submission to the NIH is NOT an announcement (or any part) of an actual FOA. This document was prepared and submitted by Dr. Zaher Nahle, vice president for research and scientific programs at SMCI, using existing material from the NIH website combined with original content and opinions. This document is intended for informational use only and is a fictional FOA.

SMCI also participated in two additional responses to the RFI from the NIH. First, SMCI partnered with Bob and Courtney Miller as a cosigner of their response to the NIH regarding the funding of an Ampligen trial. And second, SMCI teamed with over a dozen organizations and advocates, including Mary Dimmock, Jennie Spotila (OccupyCFS), and Cort Johnson (Health Rising), to address major budget shortfalls and policy barriers in this additional NIH response.

A key element of our work at SMCI, in addition to funding research ourselves, is to continue to actively and knowledgeably engage with federal officials to press for additional ME/CFS funding and appropriate research.