CFSAC Recommendations - June 16-17, 2014
- CFSAC recommends that the NIH adapt the architecture of the National Autism Research Database (NDAR) to setup and
provide ongoing support for a data and bio-bank sharing platform for ME/CFS research. This platform should allow for both phenotype and biologic data.
- CFSAC recommends that the NIH issue a Request for Applications (RFA) for ME/CFS by November 1st, 2014, or as soon as feasible, to address the gaps in ME/CFS knowledge and research. The RFA should consider current known gaps in knowledge for the following areas:
- Provocation designs where symptoms are triggered through standardized challenges involving exercise, cognitive tasks, and mental stressors. These designs appear to be more likely to identify symptom to biology relationships in comparison to assessments done in resting states.
- Ambulatory monitoring of symptoms, activities, behaviors, and physiological states that identify associations between biological and behavioral measures, e.g., daily fatigue ratings and cytokine fluctuations.
- Network analysis of dysregulation of multiple bodily systems, such as the neuroendocrine system, the central nervous system, the autonomic nervous system and the immune system.
- Natural history studies aimed at identifying the genetic triggers and causal factors of ME/CFS.
- Treatment trials that address both clinical and biologic outcomes.
This RFA may also be informed by the gaps identified in the 2011 NIH State of the Knowledge Workshop, the Pathways to Prevention Program for ME/CFS research panel report or any relevant source, including but not limited to, the IACFS meeting summary.
This RFA should encourage investigators to use the NIH data and biobank sharing platform (subject of an accompanying recommendation to this recommendation), if such a platform is established at the time of release or becomes available during the time awards are made on this RFA.