Journal of IiMER Volume 10 Issue 1 Third, the serious deficit in comprehending the natural history of the disease is another key challenge. Case in point are statements in the February 2015 Institute of Medicine (IOM) report indicating that the committee “was unable to define subgroups of patients or even to clearly define the natural history of the disease” recommending that “Studies aimed at assessing the natural history of the disease and its temporal characteristics (onset, duration, severity, recovery, and functional deficits) are essential for a better understanding of ME/CFS and also are important to further refine the diagnostic criteria proposed in this report.” Fourth, the reluctance of most pharmaceutical companies to invest in the ME/CFS field absent reliable biomarkers is a challenge. In effect, this virtually eliminates the bulk of the financial and technological contributions from the private sector. Therefore, clever public/private partnerships to stimulate such endeavors are needed. These four issues define the “humanmade” impediments to solving this disease. The complex nature of the disease is a challenge itself; the biological pathways associated with ME/CFS pathophysiology are hard to investigate since by all indications they affect systems that are pleotropic by nature, i.e., regulating multiple interweaved networks and targets. Let’s illustrate this last point with an example: Take Cortisol, which is now being studied in depth at the CDC through its ME/CFS clinical multi-site program. It is a critical steroid hormone regulator within neuroendocrine signaling but also regulates a myriad of key components in the cellular energy production machinery (i.e., bioenergetics) and influences essential genes of inflammatory cytokines as well, hence altering our energetics capacity June 2016 alongside our immunity and inflammation status. Clearly, a singular factor can potentially control complex functions and systems that are intertwined and interconnected. When it goes awry, the consequences become multifactorial. One can list many more examples associated with ME/CFS, from mitochondrial dysfunction, to pathogenic factors to neurological abnormalities to autonomic deregulations that are all, by design, complex, pan-disciplinary elements crucial for our cognitive and physical functioning. At our organization, the Solve ME/CFS Initiative (SMCI) and under the leadership of Carol Head, SMCI president, we work to mitigate these challenges in several ways: I. One, we continue to put resources into projects that accelerate the discovery process. We promote this function by: i. Supplying any investigator studying ME/CFS the research materials (specimens) they need, using our Solve CFS BioBank; Our BioBank and Patient Registry™ holds a repository of physical samples from ME/CFS patients to supports the work of qualified researchers. This important aspect of services that our organization provides to researchers, also represents our efforts to link patients directly to researchers and facilitate the use of human materials in the process of investigating ME/CFS. ii. Funding meritorious grants through a competitive peer-review process to identify innovative technologies, Invest in ME (Charity Nr. 1114035) www.investinme.org Page 21 of 77

22 Publizr Home

You need flash player to view this online publication